Advance Health Care Directive
If the extension of my life would result in an existence devoid of cognitive function, with no reasonable hope for normal functioning, then I do not desire any form of life-sustaining procedures, including nutrition and hydration, unless necessary for my comfort or alleviation of pain.
…
My agent shall consent to and arrange for the administration of any type of pain relief, even though its use may lead to permanent damage, addiction or even hasten the moment of, but not intentionally cause, my death…
That’s the document my Uncle Larry signed fifteen years ago when he first got his HIV diagnosis. He had always seemed like a devil-may-care sort of guy who planned to live fast and die young. Linger for months, attached to tubes and machines? No way! “Just shoot me now” was his signature expression, often used to express sarcastic disapproval of anything unfashionable, but taken literally in the case of his “Advance Health Care Directive.”
I actually knew very little about my uncle (whom I’ll dub “Larry” here to maintain his privacy) until he collapsed in public a little over a month ago. He never got along with his brother (that is, my father), and he lived 3,000 miles away on the East Coast, so he rarely showed up at family events. But on those rare occasions he did, he fawned over me, called me his “favorite,” and once I had grown up he told me that I was the only relative he could stand to be around.
As a gay man, Uncle Larry never had any children of his own, nor did he (as far as I could tell) ever have a long-term romantic relationship; so I shouldn’t have been surprised that when the time came for him to name an “emergency contact” on various health-care forms, he wrote my name down.
But he never informed me of this. So when I got a call in the middle of the night last month from a hospital on the other side of the country, with the news that Larry was deathly ill and that it was incumbent on me to make health-care decisions on his behalf, I was taken aback. I’d always been somewhat fond of my uncle, but hadn’t given him much thought in the last decade, as he’d fallen out of touch with the family.
Before I knew what was happening, I put my own life on hold, jumped on a plane, and flew to be by my uncle’s side. At the hospital, I was asked to sign a flurry of documents, granting approval for all sorts of seemingly trivial medical procedures. Do I consent to be the decision-making agent for this unconscious patient? Sure. Is it OK to give him an X-ray? Yup. Permission to transfer him to a different room? Connect an IV? Give him him this drug and that drug? Yes, yes, yes.
Despite all this, the doctors were a little cagey in revealing to me exactly what was wrong with Uncle Larry. Apparently his immune system had finally collapsed after living mostly symptom-free with HIV for at least 15 years, and as a result he had not one but several life-threatening conditions all arising at once. Infections here and here, cancer there and there, organ failure top to bottom — the more the doctors looked, the more they found. When I asked precisely what it was that was killing Larry, one doctor summed it up by shrugging and saying, “Everything.”
Even so, Larry’s body was stubborn. Despite numerous predictions of his near-immediate demise, he kept living. Unconscious, bed-ridden — but still breathing, blood still pumping.
After three days in the hospital, I was told by the staff to “go home” and get some rest. But home was thousands of miles away. So I took Larry’s keys from the “Patient’s Possessions” bag and spent the night sleeping in his apartment.
The next morning I realized just how sudden Larry’s collapse had been. There was perishable food still sitting out on the counter. His dog had finished off what was in the dog-food bowl and was now starving. There was a movie in the DVD player, still on “Pause” apparently from when Larry had stopped it momentarily to go down to the corner store.
On the kitchen table was a pile of half-opened mail, half of which were overdue notices for various bills and debts. I went downstairs and opened his mailbox to discover it stuffed with more envelopes marked “Urgent Attention Required!”
I returned to the hospital but his status was unchanged. I sat by his bed for a while, watching him breathe, until a trio of grim-faced men appeared in the doorway. They ushered me into an office. It was time for The Discussion.
The trio consisted of Larry’s physician, a “hospital social worker,” and the head of “hospice care.” They informed me that, in their opinion, Larry was not going to survive, and that only the most extreme measures could prolong his life, and even then it would probably only be for a short time. Furthermore, any operations or chemotherapy or other treatments could very well kill him more rapidly, considering his delicate condition. Considering all this, they recommended transferring Larry to “palliative care.”
When I seemed confused by this term, they explained that “palliative care” meant that the hospital would no longer try to diagnose or treat his condition, but rather would just let him drift toward death at his own pace. The only steps the doctors would take would be to ease his suffering with potent painkillers.
I must have hesitated, because the hospice guy whipped out the “Advance Health Care Directive” which Uncle Larry had indeed signed in 1996, part of the standard “end-of-life planning” the hospital insists on for all elderly and sick patients — especially people diagnosed with an HIV infection, as Larry had been.
When I again hesitated, I was informed that in this case, my consent was not needed, because Larry had himself left explicit instructions, which overrode any opinions I might have on the topic.
I read the whole document, which actually ran to over three pages, and conceded, “Well, if that’s what he wants, that’s what he wants.” I signed the form for Larry to be transferred to a hospice facility.
He was supposed to last only a couple of hours in hospice — a day or two at most. Oh no, but not Larry. Days turned into weeks, weeks rolled on to over a month. He was like the Terminator of patients: he just…wouldn’t…die….
What was I to do? Fly back home and leave him there? Believing the prognostications that he would expire at any moment, I stayed, and stayed, and stayed, calling California every now and then to try to keep my own life from falling apart.
Thank you for a very personal and moving piece. There’s a lot to think about here, in a situation where the “right” answer can be terribly difficult to find. Somehow, I think the orderlies and assistants are on the the better track. I hope that nurse wasn’t typical of the breed: it’s a terribly callous attitude to take in a situation where many of the “givens” of life tend to fly out the window.
Sadly this was my experience as well. I had the hospice care at my home (for my mom) and she was overdosed by her doctors and the blame was put on me! I had to prove my innocence to the state and I was exonerated. I will never be the same…
Thank you for a thought-provoking and difficult essay. Condolences for your loss.
“…I hope that nurse wasn’t typical of the breed:…”
But, the Nurse and other medical “professionals” are the ones with the power over life and death. Think of that! Now they are GOD.
Remember that during the 30s, the “professionals” were the strongest supporters of Fascism. And it’s about Power.
To heathermc,
You may be correct about SOME doctors and SOME nurses. I am a Registered Nurse and have been since 1990. I have practiced in many settings with patients ranging from pediatrics to those who have passed the century mark.
From my earliest days working in this field and trying to get a dying 16 year old cancer patient to the hospital to alleviate her suffering I have never felt I was god. I have at my best felt I was the patient’s advocate. Not their family. The patient. I wanted what the patient wanted for as long as they could express it. Only when they were unable to express it did I defer to the family’s desires, directing my care toward the goals they chose.
I have worked with hospice patients and seen more than one “graduate”. Not into death but into improved health. After all the cholesterol pills and excessive vitamins were discontinued and the patient was not being over-medicated their conditions sometimes improved rather than worsened. After exceeding the six months of hospice care they were often more alert, more awake than they had been for over a year prior to hospice.
That doesn’t make me feel like god. It doesn’t make me feel like a saint. It makes me feel like a nurse, one who helps the patient, not the doctor.
I am offended by your attitude. As the husband of a woman who lost her European family members to the Holocaust I am offended by your comparing me to the nurses who participated in the death camps and the T4 program that preceded them.
You don’t know me. You don’t know my work. You have no right to judge me.
She didn’t judge you. You did.
“Without realizing it, I had just taken sides. What choice did I have?”
None. You are a human being, and starvation and dehydration are intensely cruel; you and the orderlies were in the right.
I don’t have any more answers than you do after this ordeal, but you are quite right that you didn’t have a choice. I’m sure Nurse Kevorkian sees it differently, but I would have to disagree with her, and agree with you and the orderlies.
Condolences, and I sincerely hope you can bring order to the chaos.
Dianna, please don’t take this as an attack, but you don’t know what you’re talking about.
What we have here is a case of a very, very badly run ‘hospice’. As a Registered Nurse working in hospice care, I can tell you that there are very, very good reasons *not* to feed a terminally ill patient. If the patient can’t swallow effectively, which is a very common symptom when one is close to death, food or fluids can be aspirated, meaning instead of going into the stomach where they belong, they end up in the lungs where they lead to all sorts of problems such as pneumonia.
Now, the patient described in the story above *may* have been conscious and had a good enough swallow reflex to eat. I can’t say, since I wasn’t ever his nurse. But, in any hospice I’ve worked in, if he could eat he would be fed.
As for the use of morphine for pain, it is the standard pain medicine in most hospice settings, and for one very good reason; it’s inexpensive and very effective. However, the goal of pain management in any competent hospice is to get the patient to their best place of comfort. That *may* mean they need to be totally sedated, or it may not, depending on the severity of the pain they’re feeling. The goal is to get them to a level of pain they can best live with, and help them stay there until the end, not to knock them out so they can’t change their minds, as is implied in the article.
In essence, what it sounds to me like the author is dealing with here is an incompetently run hospice. There is no excuse at all for an inpatient hospice to have no nurses at all present, and, depending on the state, having someone who’s not a licensed nurse administer narcotics and other controlled drugs is not just unprofessional but outright illegal. Moreover, the best way to ensure that the patients are being well cared for is for them to be cared for around the clock by trained, licensed hospice nurses.
I think the author has a good case for negligence by the hospice itself, and probably malpractice against the doctors that run it. But you shouldn’t be so quick to condemn everyone who works in hospice care because of this incident; all of the hospice nurses I’ve worked with would be appalled to read about this man’s ‘care’.
I would take this as an attack. i have also worked in Hospice and could no long do so due to these issues. I do not believe the author wrote this to call attention to anything other than the fact that people do not understand what they are signing. This is a clear depiction or what I believe is most people who sign these documents. Patients are not informed of all of the circumstances that are involved, and do not understand the ramifications of signing these documents. I believe that most patients when signing these are thinking that they are preventing someone from keeping them on a machine ( respirator, N/G, TPN ) when they are brain dead . I do not believe that they understand that these things happen everyday! Many patients in Hospice do benefit from these action (no nutrition, hydration, morphine), but in many cases they are slowly Euthenised!! So instead of defending Hospice, maybe you should jump on the ban wagon to inform about these documents, because if you have worked in Hospice you know that these things are true.
ah, zombie …
first, I hope you are doing well yourself, after all of this.
I went through my father’s passing about three years ago. All the details were different, but the stresses were the same because The System is the same, and some of the best advice I heard was, “Take care of YOURSELF” as you go through this. And, what needs care is not just the loss of a loved one (as the case may be), but the shock of the exposure of you as a gringo, as a civilian, to The System.
I was lucky (if you call it luck) because my cousin is a nurse of huge experience, who was able to come and visit, talk to hospital staff, and tell me what was up. It’s another universe in the hospital next door.
Very early, I was told that there are basically two paths that people take, either the DNR early on, or the hold-on-as-long-as-possible. Most of the Hispanic community, legal and otherwise, and perhaps other Catholics, tend to fall into the hold-on category. The hospital administration desperately prefers the DNR category. It seems as if you walked into the hospital to visit the cafeteria and buy a Pepsi, they would first require you to sign a DNR, and the odds of you getting out alive are less than 100% by don’t-even-ask-how-much.
My father’s situation was that he was 86, had been in great health until what turned out to be his last week, and with competent medical care might have had another five years of declining abilities at home with his wife, but nine kinds of incompetence worsened his situation until he passed. The system shrugged. I did not pursue any legal channels, although I clearly had several very clear careless events that could probably have forced a moderate settlement out of doctors and hospitals. But really, for what? That’s the horrible truth that The System knows. People die, and very often their last days, even years, are not going to go very well, no matter what.
It was a new lesson for me. I knew it before, intellectually, but it’s another thing entirely to watch it happen, a slow-motion disaster, series of disasters. I could see the sympathy in my cousin’s eyes. She was going through this with her own mother, my aunt, at the same time, in a skilled nursing facility, DNR signed long ago, and kept alive against stipulations several times. And I could see the stress in her, no matter the difficult relationship she’d always had with her mother, and her profesessional experience, it’s another thing when you are one of the principals.
I won’t go through the horrors that The System put me through, but many were along the lines of what you described.
I tried to learn from it, but the lessons are all horrible. Or, perhaps they are just facing up to the facts of life, at least the facts of our current healthcare systems, our current healthcare technology. BTW, yes this was at what passes for a good hospital, as things go.
The other best advice I got, and it comes from many places, is that if you ask, “How does one get over these events?” the answer is, you don’t, you just learn to live with it. That too is a life lesson.
I might have thought this accusation was a little over-the-top had it not been for the attitude of the nurses themselves, in particular the main daytime chief nurse who also confided in me and whom I eventually nicknamed “Nurse Kevorkian.” She flew into a rage whenever she found a hospice worker sneaking food to a patient, going so far as to clean the food out one patient’s mouth to make sure no more got swallowed. As we sat by Larry’s bed together now and then, she expressed enthusiasm when his vital signs continued to drop, but became annoyed if he seemed to rally with a stronger pulse and more vigorous breathing. She assumed that I too was hoping for as rapid a death as possible for Larry, and complained bitterly about the crazy Filipinos and their weird attitude.
Wow.
My recent experience with a similar situation is that one should never sign a DNR until it is clear to one and all that the person is failing with no hope possible and that pain without morphine would make their final days a horror.
My experience taught me that each death is different, but we have to do what we can to protect our loved ones and to not let anyone–hospital administrator, doctor, or nurse play God. Death comes to everyone. It’s important to keep that in mind.
My most sincere condolences. And what a story. Thanks so much for sharing this with us.
Terry Shiavo also died of starvation and dehydration. She was a healthy woman who also had very little brain function. Her breathing was fine, although her body barely moved and not of her volition. She could swallow but not reliably, so she was fed through a tube. She would have lived for years if not ordered to be killed by her ex husband.
If the body is alive but the brain, except for the most basic functions, is dead, is that really “life”? Just because modern medicine can maintain most major systems in the human body without the brain being involved in the decision, should that be allowed? What is one’s moral and legal responsibility if named to take charge of another’s medical care? Remember that God, your higher power, or mother nature will withdraw the gift of life at some point. Only you and your conscience can decide whether or not to agree with another’s wishes to make that as comfortable as possible, even if to do so will hasten death.
There is a huge difference between “heroic” medical attention such as radical surgeries or even defib and not allowing food or water. Starvation or dehydration are not “heroic”. They are simply what every human being should be entitled to. It’s natural law written on the hearts of those orderlies who understand that dying people deserve dignity simply because they are people.
In the case of Shiavo, her parents were ready, willing, and able to take care of her. All her husband had to do was hand her off. Instead the courts went with a fuzzy memory he had (or maybe a made-up story) that when she was a lot younger and healthier, she had told him in passing that she didn’t want to live as a vegetable IF anything happened. There was nothing in writing. It wasn’t even a “let’s sit down and have serious talk, dear.”
I started out on one side of that case and the more I read about it the more I came to the other side. Disability rights activists were on her side. Feminists should have been but weren’t, I think because it would undermine their pro-choice arguments. (Think about it.) It was a miscarriage of justice if ever there was one. Not to mention the msm sneering at the “unsophisticated” “rightwing fundamentalist” people protesting on her behalf.
Lost my mom just over two years ago. The diabetes had made her life hell for years, resulted in several heart attacks, which prevented them from operating on her uterine cancer, which thickened her blood, which resulted in a stroke.
She was the saddest, angriest, most depressed person I have ever known… and that was before she got really ill. I always liked to say that she had been getting ready to die since she was 30 (she passed in her mid 50′s). From the time I was in the 4th grade I would get the annual “This is what I want you to do when I die” speech”. Have me buried in this dress, have me buried there, have me cremated, tell this person I love them, give your sister my jewelry, tell this person I still hate them… yadda yadda yadda.
I guess you could say that I was as prepared as was possible when she went into the hospital that last time. The one thing she was consistent about was she didn’t want to be a bed ridden vegetable. She had been a caretaker for several people, including my great grandmother. She had seen the pain, frustration, fear and bed sores. She lived in fear of ending up like that. I think that’s part of the reason I got the yearly ‘talk’.
Thankfully she filled out a will several months before her stroke. She got her wish. My sister and I sat with her in 12 hour shifts for 8 days. The last 6 days or so there was no water, food, lots of morphine. Her lungs slowly filled with fluid.
I don’t think you could say she was ever in a ‘normal’ state of mind. Depression, malignant narcissism, I don’t know what the shrinks would call it but I suspect she was as least as bad as your uncle. For her, life was hell, first emotionally then physically. Does that mean I should have ignored her wishes? Should I have hooked her up to feeding tubes and had the fluid sucked from her lungs every few days while bed sores took over her body?
I know that she was afraid while she was still conscious but I also know she spent her last few years wondering why God wouldn’t let her die. I want to live as long as possible, but after watching my mom die I can only hope that I pass as quickly as possible when my time comes.
“Without this, she explained, hospitals would have to spend a fortune on ridiculously expensive diagnostics and operations and procedures for people who are dying anyway.”
Is there any one of us who doesn’t fall into this category? We are the people who are dying anyway, we are all in the same boat. So, this nurse has a hidden determiner of value, which must be economic productivity. She has taken it upon herself to judge who deserves the diagnostics, operations, and procedures, though it is unspoken. When will she herself cross the threshold to longer deserving the medical care? Know one can know this threshold. It is a false threshold, because it is the individual who values his own life, and society should reflect that fact. Today’s society is presenting quite a different evaluation of an individual in terms of “the collective,” and its economic resources.
The last few months are exceedingly valuable for families. When there is a buffer of time before the end, friends and relatives can get funds together to visit; to apologize, clear up misunderstandings, see grandbabies, make peace, offer spiritual help. If they can’t make peace, at least they could later know that they tried.
For some who are at peace with their Maker, it could be easier to do things to hasten the end, that is an individual decision. What is truly difficult is when you can’t communicate with the person who is dying to know his state of mind, and this is the most difficult thing we could be asked to face, as those making decisions. You faced it well, Zombie.
Dear Zombie, Yours is a poignant and heart felt tale. Thankyou for sharing. As embodied souls, we must all face mortality. As an increasingly collectivized activity, outside the home med care delivery is subject to growing political control. As always, politcs is ONLY about control of money stream and power. If you want to die on your own terms, die on your own terms.Modern, technical medical services will always and increasingly be politically rationed, sad reality of the material element of human existence. Free your spirit, the body is but a vessel. PS, Yehudit would your really wish Ms Shiavo’s physical state for yourself or loved ones??
This article is very moving and it summarizes the group suicide of western civilization. When the life man is considered lower than that of an animal and a living God is replaced by the God-state, this is what you get!
My condolences, zombie.
For what it’s worth, my great-uncle died in hospice care about half a year ago. He had left his DNR orders, and even in his very weakened state he staunchly refused food and drink. He lingered for about eight days, went down to skin and bone. All the attendants, including the ER doctor when we first brought him in, were incredibly kind and understanding.
My experience with hospice and my mother-in-law was better probably because we live in a more religious part of the country. Nonetheless, one message from this story is that people should never sign DNR orders, Advance Care Directives or Living Wills. The only thing these are used for is to deny care. The relatives can always agree to limit care should the need arise.
The sad thing is that the medical professions as a whole can no longer be trusted. They will not police themselves. This means they cannot be trusted to wait until you are really dead to remove your organs.
If the need arises I will trust my wife to make the necessary decisions. For that matter my Filipino sister-in-law can stand in for my wife if she’s unavailable.
As a hospital nurse who has done hospice care for many patients, I find your story reprehensible. Patients that I have taken care of can take nutrition are given whatever they wish including pudding to diabetic patients. I have seen to much sedation and pain medication ordered for the dying but any reputable nurse would never give something that isn’t needed. Pain assessments should always be done before giving these drug. Even an unconscious patient shows signs of pain that are assessable.
The issue I see as something that is not discussed, in the name of love we torture people to death. I have seen the dying subjected to many painful procedures and denied the needed pain medications because the family wanted “Everything done”. Even Iv fluids can cause great pain when your body is in a failing state and these fluids are held and cause a sever edema called anasarca. These poor patients leak fluid out ever hole in their skin they have had poked in the last few weeks. When these same patients are full codes pain issues are not addressed in the same aggressive way a palliative care patient’s are because like you stated these medications do cause depression in breathing and blood pressure.
As a nurse who has had to participate in this kind of care for the dying and because of what I have seen I have a durable power of attorney to prevent this from happening to me that I have given to my doctor. As a wife I took care of and did hospice for my husband here in my home for the last 3 months of his life rather than subject him to needless procedures, pain and confusion.
No there are worst things than dying peacefully with your family around and I have seen it far to many times. That kind of love I respectfully ask my family to spare me from. Remember this is an issue that has many facets and not all are so bad.
Thanks for your comments and story.
Friend Zombie, I understand that you are not particularily religious, as am I. However, I ask the Lord for mercy on the soul of your uncle and I ask Him to grant you peace.
Thank you for your story.
Yr. Obt. Svnt.,
Faffnir
Wow. Just, wow.
My Father-in-Law passed away in August, after a stroke that left him essentially bed-ridden. He was able to eat, and lived at home with his wife– a nurse would come by twice a week to help bathe him. Before the coma, he would joke that he really just wanted to die, because being old was depressing.
I know he changed his mind when my son was born (pre-stroke), and I know he was overjoyed to meet his granddaughter (post-stroke)– he was able to hold my son and play with him, but he could only look at my daughter. In the moment he first saw her, I knew that he would have dealt with 10 times the pain and misery to see her just one time. He almost made it to her first birthday. Life is about so much more than living, as we understand it.
Condolences on your loss.
Such incidences are truly sad and condolences are in order, zombie, but it is the cycle of life and will eventually happen to all. I’ve gone through it many times with close relatives and it’s made me see the need for DNRs. If all the goody-two-shoes here stop and think, life sustaining efforts are for the living, not the patient, in almost all cases and more so in terminal cases. Why weren’t those people in more contact while the patient was living? I for one, have signed a DNR because I don’t want to lie around slobbering all over myself waiting to die; when it’s the end it’s the end why stay in pain for nothing? BTW if anyone tries to interfere, I’ll get out of bed and slap a knot on your heads.
The personal stories are often the most ‘real’ because they’re so honest and raw. This is an excellent example of the whole debate over the value of life; I have been accused of having an attitude much like the hospice staff, of almost ‘over-valuing’ life, even when the quality is next to nothing. It’s a tough debate (how much money should we pour into someone who is 90+ years old and will surely die at some point soon?) but we must never let go of the fact that there is sanctity of all human life, and Nurse Kevorkian and her ilk must never be given free reign on the policy decisions.
Although I am not afraid of death and wish to die with some dignity, withholding food and drugging someone to death is never, NEVER OK.
I have a son with Bipolar Disorder and too understand the highs and lows those who suffer with this debilitating disease. What happened to Larry is unconscionable.
You have my deepest and utter sympathy at your loss and having to watch him suffer the way you did.
I have drafted these documents for many clients. My wife and I have one. I would still recommend them to folks, but I would also advise them to read your piece.
Let me add that my dad had one that I held for him. We — his family — honored it, after consulting with the doctors and the Lord in prayer. But I refused to allow the hospital administrators to be involved. I told them Dad had an advanced directive, but I would not give it to them. I simply did not trust them.
Peace and blessings to you, and may your uncle rest in peace.
Let me apologize in the beginning for what is likely going to be a long post here.
I am a Registered Nurse and have been for just short of 20 years. I have worked general medical surgical, Neurological ICU, Long term care (nursing homes) Long Term Acute Care (hospital care that requires long term admission) wound management and last for 7 years, cardiac nursing. One could say I have run the gambit in the type of patients I have worked with.
That said, this article and many responses infuriates and saddens me at the same time. At one time in this country a patient did not have the right to leave the hospital if they did not wish to, they did not have the right to stop life sustaining care if they had not wished it and if they were dying and had come to the hospital they did not have the right to leave and die at home if their physicians did not feel it was appropriate, and the vast majority did not. This is not ancient history, none of this changed, and then slowly after Karen Ann Quinlin’s parents sued for the right to be able to allow their daughter to live or die naturally. Perhaps none of the people commenting on this nor the author has ever seen Whose life is it anyway? It was not until 1990 that the AMA issued a formal position that a physician may, WITH INFORMED CONSENT FROM THE PATIENT, can withhold care from a close to death patient. Then also in 1990 Congress passed Patient Self-Determination Act, requiring hospitals that receive federal funds to tell patients that they have a right to DEMAND OR REFUSE treatment. It did not take affect until the next year. This was the year I graduated Nursing School, so folks for only 20 years has the overall law of the land even recognized that YOU HAD THE RIGHT TO DETERMINE YOU COULD WITHDRAW MEDICAL CARE IF YOU WANTED TO.
Until this was passed per the Nancy Beth Cruzan case went to the Supreme Court it was presumed this was stated by the Missouri State Supreme Court, that you did not have the Constitutional Right to deny lifesaving medical treatment. In other words the law until 1991 was that you could be forced to take treatment including being force fed, which by the way was routinely done until then, forced to take fluids orally, which was done using 60 cc oral syringes, because you did not have the constitutional right to say no. The state had the right to force fed your child, to force any kind of medical care a physician deemed appropriate, not you as a parent.
Is this what you would advocate we go back to? It is YOUR RIGHT and YOUR RESPONSIBILITY to ensure you get the care you or your loved one wanted. And Advance Directive ensures that you do receive the care you want, even when it makes your family uncomfortable. And that is where Zombies narrative comes in. The discomfort in watching someone die, even those we are not close to or vested in, makes people very uncomfortable.
Zombie questions if perhaps during a despondent period the Advance Directive was written and that it was only the patients way of committing suicide, let me ask this. The Advance Directive was written in 1996, the actual dying was in 2011, do you zombie think that at no time could this advance directive have been changed had Larry wished to? In 15 years he did not make that change. I would wager there is a reason for that.
Next, the refusal by the aides in that hospice to follow physician orders that were made based on the Advance Directive is illegal, and poses legal ramifications for the responsible nurse, because aides MUST be supervised by a present RN. Hospice facilities are required by law to have an RN physically present 24 hours a day. The U.S. Code of Federal Regulations (42 CFR Section 418.82) states: “The hospice must provide nursing care and services by or under the supervision of a registered nurse. Understand a nurse may not be supervising without being physically present in the facility. So how suddenly a nurse showed up when previously there was not one one is a mystery to me. Follow this link if you wish to look into more information http://www.hospicepatients.org/hospic41.html
Next, feeding a patient that has specifically written they do not want to be fed is considered force feeding a patient, which may not be done. Those who are in a state in which only autonomic responses are functioning will open their mouths and swallow if the ability to do so is still present simply because of the autonomic response. This does not mean the patient is making a conscious decision, it means the body functions below that ability to make a conscious choice are still functioning. If those responses are not functioning well then the staff that is giving food and water run the risk of having the patient choke to death, or of dying of aspiration pneumonia. This may not be the best time to explain silent aspiration, but it can be looked up by anyone caring to do.
If you were uncomfortable with this hospice you had the right to ask to have Larry moved. You have the right to get other physicians, you have the right to not have the nurse you were uncomfortable with taking care of Larry.
My point is this. Each and every one of us have to be responsible for our own health care. Larry made an informed decision that he did not rescind in 15 years, even when his mental state was no longer depressed. Does Zombie or anyone else have the right to second guess what Larry specifically wanted? Zombie had the right, and frankly the responsibility to speak with the physician regarding the morphine and how it was given if Zombie was uncomfortable with what was being done. Frankly it takes very high doses of morphine to actively kill someone. Yes, it will decrease respiration’s per minute as well as put most people as decrease level of consciousness, it will not however make people completely unconcious unless, again given at high doses every couple hours. An awake and alert patient will wake and alert out of a drug stupor when spoken to or if necessary, touched. Morphine alone did not make it so that Larry was not able to voice anything. His overall condition likely made that occur. Morphine, however, even with the properties that decrease respiration, also have a property that makes it feel easier to breath and which decreases anxiety because of this. It is my belief that ALL the properties of morphine are poorly explained to families.
By the way I work at a Catholic Hospital, part of Ascension Health, the largest Catholic non profit hospital entity in the United States. There are crucifixes in overt places and at 8a and 8p we have prayer over the speaker system, though not by strictly Catholic providers. However, the vast majority of us that work there are not Catholic, including myself, I am a staunch Baptist. The fact that the hospice had religious imagery has to do with the facility and who the administration is, it has little to do with the employees religious background.
I personally have much concern regarding government in the health care business, but not because health care professionals are following the Advance Directives of their patients, even when that makes family or friends uncomfortable. It causes me concern because I know the history of how hard many within health care had to work to ensure patients had rights, including the right to not be treated except to receive care that made them comfortable. Or if they wish, not to be treated at all. I also know the history of eugenics and the zeal in which not only government and medical professionals applied the principles of eugenics, but also have heavily it was embraced by the general public.
You see as a nurse I am a patient advocate, that means I do not advocate for the government or an insurance company, nor do I advocate for family members wishes. I advocate ONLY for the patient, and then for family only if it has bearing on patient care. It is the person in the bed who needs to be assured that they will receive the care they want, not what makes the family or frankly the health care employees comfortable. Those in health care who can’t manage that should get the hell out, including those who feel they have the right to override what the patient clearly and legally stated they did not want.
Ask questions, demand answers, be responsible for your care. The vast majority of patients are not, they come in have no idea what meds they are on or why. I once had a patient become enraged at me because I did not know what “little yellow pill” he took that made him pee. I could make a reasonable guess, but since I was not sure nor did I know the dosage I certainly should not be saying a thing about it, nor is it my responsibility to know this patient medications, however it is his responsibility.
Larry made his choices, he did not change that for 15 years. It made Zombie uncomfortable, and unfortunately he/she experienced non licensed people who also had difficulty separating their feelings from what their patients clearly expressed at their wants. The government, nor physicians nor family has the right to do this, regardless of how uncomfortable it makes those who don’t like it. The patient has that right.
Giving the patient the right to die the way they wish is not killing the patient. It is confirming a persons right to be free from coercion even at the end of their life. Anyone who believes in conservative values should confirm that this is a basic human right. Like anything else, you may not like the choice that person is making, but they have the right to do what you may not like, or are comfortable with. The plain truth is that Larry was not going to live no matter what was done, and knowing this would occur Larry made choices regarding his care. Would he have lived a few more months given food and water? Likely. The reality is that in 1996 until unable to voice the thought, Larry likely knew that. He made the choice to not extend those few months.
He made that choice Zombie. All you are doing is second guessing his choices and it is clear you are blaming a health care system for that choice that made you uncomfortable as you watched the dying process. It is deeply unfortunate that you did not have a more caring nurse who could have seen your struggle and assisted you to a much better degree. Or perhaps I should say it is unfortunate that you had a nurse who was more interested in talking than in listening. Sensing your discomfort she felt the need to defend herself and her belief system instead of focusing on the patient and HIS belief system.
HIS belief system and choices Zombie, not hers, and not yours. That by the way, is what a true patient advocate does.
You obviously did not read the story very carefully, or you don’t care about the reality. Larry was mentally ill, and was probably in the depressive stage of his mental illness when he signed the DNR. Larry specifically asked for help when he was dying, because obviously a man who lived as Larry did, had likely changed his mind but forgot he’d signed his own death warrant years earlier. when Larry asked for help, he indicated with all the abilities he had at his disposal, that he wanted something OTHER THAN the care he was receiving at this point. Nurse Ratchet killed Larry, drugging him so that he could no longer express his changed wishes, and ignoring the patient’s will to live. If you have acted similarly, I’m not surprised that you want to defend the killer’s actions, but you are similarly morally liable for the patients you have killed against their will. A sincere Examination of Conscience might have given you the answers you’re looking for had you been Catholic. I find your actions scary, and I’ll be sure to keep my loved ones out of Ascension Health hospitals.
You obviously did not read Mere Citizen’s post very carefully. She addresses all your points except one — the superiority of the Catholic over the Baptist faith. Nice. (What’s your opinion of Judaism?)
we can speculate about his state of mind endlessly (and pointlessly), but the fact remains that the directive was signed, and unchanged per the original signing. i think many would argue it is far crueler to intentionally disregard someone’s final wishes in order to make yourself feel better, than it is to, as some people would so foolishly put it, “kill someone”
I think it is important to pay attention to the professional Nazis posting here, the RNs “CarolAnn” and “MereCitizen”. “It is against the law” to care for people; “final” wishes are not written 15 years ago. I feel like throwing some diapers on these RNs, strapping them into wheelchairs or hospital beds and leaving them in their excrement and urine and starving them to death and if they say anything giving them a shot of morphine. I’d like to hook Nancy Pelosi, Barak Obama & all those who voted aye on obamacare up for a few days also. My relatives were told by a Catholic hospice that if my aunt WANTED to eat she wasn’t supposed to be on Hospice. But the Catholic social worker working for the Catholic nursing home said she had to go on hospice so that she could get the care she needed. Hospice care in this nursing home was 1 hour, Monday – Friday. My aunt was Medicaid and institution can’t survive on pay they are receiving for her. It is funny but the lowest paid (the poor & humble) in the nursing home are the most humane; the higher pays/”professionals” will kill anyone so they can take their kids to Disney Land or buy a swagger van. Most people in the U.S. think it’s okay to kill during first six months of life, why not kill someone who only has six months left of life? I once read that an elderly person only has 10% greater chance of dying in six months than they do tomorrow–hence denial of food & water & medicine. This man goes on about the criminal behavior of his uncle, seems like the same criminal behavior of a state/insurance system that pays people to kill you while telling your relatives that they are “the caring” profession.
See the entry for 3/31/08. This is BEFORE my aunt was placed on Hospice. Health inspectors think it is “minimal harm” for a woman to be hospitalized day after Easter w/dehydration, pneumonia, four bedsores and two heel sores:
http://app2.health.state.pa.us/commonpoc/Content/PublicWeb/ltc-survey.asp?Facid=451402&PAGE=1&NAME=ST%2E+MARY+MANOR&SurveyType=H&COUNTY=MONTGOMERY
While part of her condition is “dehydration” hospital tells my sister not to give her anything because she “might choke”. It is not until next day when my mother, an RN, visits that anyone asks why my aunt doesn’t have an IV. IV precipitates crisis where my aunt doesn’t die, but recovers to be sent back to nursing home, where we are told she HAS to go on hospice “to get the care she needs.” Which is basically NO care. Unfortunately, we lived 150 miles away.
I don’t consider him to have addressed Uncle Larry’s mental illness, which speaks to his soundness of mind. Also, it does appear that he asked his niece, NOT Nurse Ratchet, for “help”-the only words he spoke during his last month?- which clearly indicates that he found “something” inadequate! I’m just not that impressed with mere citizen’s reasoning (gotta admit, some of it has to do with the fact that he doesn’t know “gambit” from “gamut”). Did you notice that even mere citizen clarifies below? Kinda takes the wind out of your defense… Erm, I don’t care if he’s Baptist, but he does work for a Catholic hospital system. In that capacity, he’s a poor representative of the Catholic respect for life. (“My body, my choice” argle-bargle???!!)
Is this what you would advocate we go back to?
As opposed to being put to death because someone finds me inconvenient?
Or expensive? Or because they feel the money could be better spent?
Given the choice of erring on the side of life or the side of death I prefer they err on the side of life.
24 and 37 Mere Citizen is correct about everything she wrote. I’ve spent most of my adult life caring for chronically ill/dying loved ones and I fight for them to get every possible minute. But there is a time when you are dying and only have choices about how comfortable and free from fear you will be as you die. Hospice care provides the comfort and freedom from fear. It is a pity that you had no one you trusted to help you understand your uncle’s dying process. But it is anti-conservative and truly appalling that you are casting about for excuses to have imposed your will on your uncle instead of honoring his wishes. I also want to emphasize that when you are dying your body shuts down and you really don’t want food or fluids. If you get them, they will hasten your death and change it from a peaceful passing to one that is extremely stressful, as Mere Citizen described. That is why there is an option to refuse them in advance directives and healthcare powers-of-attorney. You did right by your uncle by staying by his side — I believe he hung on because you were there and it was the first time in his life anyone had ever really been devoted to him.
YOU HAD THE RIGHT TO DETERMINE YOU COULD WITHDRAW MEDICAL CARE IF YOU WANTED TO.
Since when is food and water “medical care”?
Zombie – my condolences on your loss.
Compassion is a wonderful thing, and if everything was black and white it would be much easier, but there are so many shades of gray. I have a DNR – just because keeping me alive at the end would drain all financial resources away from my wife and kids, leave them destitute, with little to no payoff – just so I can lie in a hospital bed. Everyone must face reality – death is a part of living – it needs to be examined, thought about and finalized in your mind while you are clear headed enough to do so. Many such questions should be thoroughly examined – hunting, abortion, death penalties, even mundane things like government unions. Explore the questions within the questions – there’s always a scale, a bell curve, etc. At what point does your opinion flip over, why? Republicans are most frustrating to me in this regard. Pro life with the abortion question, but first to throw the switch on the death penalty.
“Republicans are most frustrating to me in this regard. Pro life with the abortion question, but first to throw the switch on the death penalty”
That’s probably because, to my knowledge, no unborn BABY has ever been convicted of, let’s say, raping then murdering a 5 yr old by bashing her brains out on a wall. That SHOULD be a difference anybody w/1 functioning brain cell can understand, even a Democrat.
Thank you, carolannie. That argument always elicits a face palm from me. Those who cannot see the difference between killing an innocent baby and putting to death someone convicted of a heinous crime are being deliberately obtuse.
I think he/she was seeing everything in black-and-white. The decision is, supposedly, between taking life and not taking life…when really, there are shades of gray depending on the circumstances, as the two commenters after that one (the one frustrated with Republicans) explained.
Also: too often, people say “repubican” when, from their comments, they really mean “conserrvative.” There’s a difference.
Eternal rest grant unto him o Lord, and let perpetual light shine upon him. A life’s worth has indeed become an economic calculation and I don’t think that’s a good reflection on our society.
Chritianity carries within its creed the wisdom of the ages for western civilization. If you grew up in the west, it doesn’t matter whether you are a Christian or not, it inescapably permeates your mind and your soul. Perhaps there are other wisdoms for different cultures.
Thou shalt not kill.
There ARE different beliefs/systems in different cultures. That is why the man in the White House sticks out like a sore thumb — makes no differnce where he was born; he was not raised American, but Indonesian, and it shows.
Ah, Zombie…Be well with your decisions. He’s at peace. You be too.
Thank you for an incredibly moving story.
I’m so sorry for your loss, Zombie. Requiescat in pace.
The part of this story that worried me the most was the fact of Larry’s bipolar disorder. I’ve had my share of unfortunate experience with a mood-altering disorder, and I know that in some of those moments, I would do things and express opinions that I never would if I were in my right mind. The fact that the doctors would push him to make this kind of decision when he was clearly depressed . . .
A nice short story. You should publish it so more people can read it and feel the pathos of your uncle’s life.
Question for A-Nobody,
Do you really think that you will convince others to consider your position by calling them “goody-two-shoes”? I’m not sure why you are worried that others will work tirelessly to keep you alive. You don’t strike me as the type of person who has a lot of friends.
Your unspoken conclusions are correct.
It is so easy for a healthy person to rationally and ‘sensibly’ decide what should happen as they near death, but for the person nearing death it is an entirely different matter. Theory has become reality. The things that people convince themselves they believe tend to fall away at such times.
I watched over a close relative as she died and I am still not sure if everything that was done was what should have been done. At least I did know that the nursing staff were fairly much a caring bunch and only gave way to terminal palliative care when the body had little hope.
To go through that door is not, perhaps, what we expect. It makes one question what, indeed, life is all about.
Yes, I do believe in Jesus.
Thank you Zombie for your humanity and for the depth of your feelings and thoughts.
This essay should be taught in every classroom.
Everybody should read it and know it.
We are past the death panels, apparently we are already at the extermination camps.
But we are not lost, yet. As long as we have a Zombie, as long as we have those people who feed the starved.
Let’s spread the debate.
Thank you Zombie…
Zombie,
I am a patient with mild bipolar disorder, who was also a Psych. R.N for 20 years, mostly before my own diagnosis. I can tell you from both angles, the low of bipolar disorder is the lowest depression you can have. but in your Uncle Larry’s case, if all his organs were failing, it was only a matter of time before he died. I believe you did the right thing by honoring his DNR advanced directive. No need for him to suffer and suffer, when in the end, death was coming no matter what you did or did not sign. May God bless you as you grieve and come to terms with your Uncle Larry’s lifestyle and death, as imperfect as it was and conflicting for you. Thank you for sharing your sad story with us, the public.
That was the most moving piece of writing that I have read in a long time.
It is a shame that such an intelligent and excellent writer as you must publish anonymously, which I assume is necessary because of your images of Mohamed project.
“…necessary because of your images of Mohamed project.”
That is correct. Too many death threats not to take seriously.
Condolences to you and prayers for the soul of your uncle, may he rest in peace.
.
I wish to clarify my somewhat garbled post, written in haste because I was so agitated.
1. Until 1991 there was no constitutional right to have control of your body. Regardless of what you may or may not have wanted, what was felt best for you by your physician was what was done to you.
2. A hospice is required to have a licensed RN in the building, unlicensed staff without supervision is illegal. I do not understand this part of the story as it is clearly not appropriate.
3. Larry made his decisions in 1996, despite 15 years intervening and a change in how he viewed life, he did not change his Advance Directives and he had that right.
4. Hospice employees who are overriding patient wishes, even though that seems kinder and gentler to those not in the bed, is considered assault. Without the ability to consent to food and water when Larry had already made the choice not to have food and water in those circumstances, means Larry is being legally assaulted by those who believe his choices and decisions were wrong.
5. If you are appalled by the idea of death panels, it should find it equally appalling to have people feel they have the right to make you take treatment. It is the decision of the person with the disease or accident in regards to what happens to their body. To ensure that we are provided the ability to have an Advance Directive, it is there to protect you from unscrupulous, economically driven administrators, as well as to protect you from overzealous physicians who believe they know your body and your wishes better than you do, as well as to protect you from well meaning family members who are grieving or uncomfortable with your choices.
6. Last, but not least, the only person ultimately reasonable for your health care is you. The person in the body. No well meaning person has the right to make you take treatment you did not want simply to make themselves feel better. Decisions made must be based on knowledge and it is YOUR responsibility to ensure you have the appropriate knowledge. A nurse will do more education with a family and patient than a physician will, however it is certainly most appropriate to seek out knowledge and not expect to be spoon fed it.
7. If you are uncomfortable about what is happening or something doesn’t feel right/make sense than open your mouth and say so. Misperceptions, particularly those I see in this article, can be taken care of, or if something truly is inappropriate it can be taken care of as well.
8. There are worse things than dying. Personally the day I see Jesus’ face should be a day of rejoicing. Do people wish to hold on to family because of their own grief or because of what is actually right for the patient? The central question always has to be about the central person. The person in the bed. Always.
As I said in the essay, ” The (secular no-nonsense) hospital sent around a low-level nurse for daily inspections, doing the rounds for an hour or so to make sure the staff was following the care orders properly.” But you are correct: Turns out the hospital was supposed to have a nurse there round-the-clock, but had cut back on the hours because of financial woes and staffing problems. The hospital had several different hospice facility subcontractors, but had not assigned enough nurses to be at each one 24-hours-a-day. So instead they had a few nurses making the rounds to each one. The owner of the hospice facility knew very well that the hospital was also violating the rules, so she brashly stood her ground when they threatened to revoke their contract with her facility. She threatened to expose the hospital’s understaffing, by way of defending herself. There was much head-butting between the hospice owner and the hospital bureaucracy.
I left this detail out of the essay because it was not germane to the story and would have bogged things down. Hope this clears things up for you.
Even having “a” nurse on hand 24-hours-a-day is a very expensive proposition for the hospital (you need at least 3 nurses for 8-hour shifts, plus more for weekends and holidays, etc. — you end up paying at least 5 full-time salaries just to have “a nurse” on-hand at each facility). The hospital tried to cut corners, since they thought no one would notice or care. But the corner-cutting came back to bite them.
It might be prudent to say that the failure of hospice to deliver your uncle a relatively comfortable end of life may have had a lot to do with the fact that it was administered in a hospital and not at home (or at least in a skilled nursing facility if he had needed more intense care). Hospitals are more subject to staffing failures, and therefore is not always the ideal setting to deliver hospice care (and yes, the terms “hospice”, “palliative care” and “comfort care” are used interchangeably, usually in order to make the first more palatable to family who believe hospice is designed to hasten death).
Many of the successful hospice cases I’ve seen take place in the home or in a board and care residence. There is no substitute for being surrounded by a familiar, comfortable environment surrounded by family and a consistent care staff. A hospital simply cannot provide that.
If anyone can take a lesson from your situation, it’s that patient choice is paramount. You can fire your hospice agency if they are not delivering satisfactory care, and believe me there are plenty to choose from. Not feeding an actively dying patient is inexcusable unless the patient is actively refusing food. The point of hospice is not to hasten the dying process, it is to provide a higher level of comfort-based care when it has been decided that a terminal diagnosis will be allowed to run its natural course. It appears from your uncle’s situation that death was actively pursued by some of the staff involved in his care, which unfortunately can be the case with many hospitals which are more concerned with getting patients out of their beds to get the next batch in.
If this is the case than Zombie, the facility should be shut down. They were clearly breaking the law, these things are not suggestions, its not like being in the hospital and a nurse having to take a load that is clearly too high because there wasn’t enough staff. Non licensed staff are to operate under the supervision of a licensed professional nurse. Not an LPN, an RN. It behooves you to make a complaint to the appropriate agency in whatever state this took place.
Re: 1, the Constitution was not changed by the passage of the Patient Self-Determination Act. It was a law that was passed, not a Constitutional amendment.
Re: 3, it seemed quite obvious on reading Zombie’s essay that his (her?) concern was that his often manicky, distracted uncle had forgotten he’d signed Don’t Save Me/Don’t Feed Me/Don’t Water Me “advanced directives” back in the initial adjustment period after a no-doubt shocking (if not surprising) HIV diagnosis 15 years earlier and that he might well, or Zombie worried probably did, subsequently change his mind and want full treatment or at least to be spoon fed if he could manage it!
As a hospital-based physician, I’ve seen numerous advanced directives that were rendered in a vacuum, completely out of context to the patient’s current situation at the time of hospitalization. The best thing for folks who aren’t at high risk of sudden death to do is to communicate their wishes and bases for these to their alternate decision-maker, ie the person they’ve legally designated as their Durable Power of Attorney for Healthcare Decision Making or, absent that, whoever such a role falls to in the state where they become ill (typically starts with spouse, then adult children, then parents, then siblings..). Then that person or persons can weigh those wishes against the SPECIFICS of what’s going on with you when you’re gravely ill and unable to make your own decisions. (Uncle Larry was right up until he failed to give Zombie a heads-up on having designated Zombie DPOA-HC/discussed his wishes.)
Re: 4, food and fluids are not truly “treatment” because they do not “treat” an illness. Everybody needs food and fluids to live. Thus it’s a tough sell to tell folks that non-invasively feeding a person is an assault on him because said person wrote 15 years ago, with no confirmation since, that he’d like to be denied food and fluids if he was some day thought to have less than 6 months to live. Anybody and everybody will die far, far in advance of 6 months if they get zero food and fluids.
Dear Zombie, Thankyou for your poignant and heartfelt story. As a culture we must acknowledge that as we collectivize any activity(including provision of medical services), political forces necessarily come to bear. This is the sad reality of life and death in a material world. The alternative is to manage these existential isuues privately.
Wow, just wow. Thanks for sharing this story Zombie. My sympathies to you and your uncle.
I actually have what is called a “Will To Live,” rather than a living will. It’s modeled after the National Right To Life’s template here:
http://www.nrlc.org/euthanasia/willtolive/index.html
Maybe it’s unnecessary, but in the military clinics (I am an active duty member’s dependent) they ALWAYS ask, do you have a living will? and lecture you if you don’t.
So I can look em in the eye and say, yes I do. (It just says the opposite of what they think it will, ie, don’t starve me! don’t unplug me!)
Moving and somber story Zombie. I actually came away from this with a greater respect for you. You did the right thing in a very difficult circumstance, and I’m not sure most would have done the same.
There are no good answers to many of these questions, because though we may postpone death for a time, its conclusion is inevitable for all of us.
I will say that in the few instances I have dealt with hospice, I came away with the impression that the people who work in hospice are some of the most loving people on the planet. And I’m sure that is a shared opinion, if obituaries are an indicator of belief.
Sorry to overpost, but something else has been coming back to me: It seems to me that the Filipino nurse’s First Amendment rights are being violated here, and are about to be further violated. “Congress shall make no law … prohibiting the free exercise (of religion)”. Many healthcare professionals are being forced to act against their religious beliefs (It’s Orwellian that this is done by people who call themselves “pro-choice”) in their practice of medicine.
i really hope this is a joke, but sadly i know it is not. this same lame attempt at a “freedom of religion” arguement has been made hundreds of thousands of times. someone’s right to practice their religion does not supercede this thing we like to refer to as, um, “laws”. would you argue that if i believe in a religion whose practices include human sacrifice, that the government would be hindeirng my religous freedoms by arrestting me for ritually murdering someone? the example is extreme, but the point is the same.
Sooo, you consider that a nurse’s desire to NOT starve her patient to death, is more or less on the same moral ground as you wanting to chomp on your neighbor’s calf? Thanks for the insight into your basic makeup.
I groan when I read this, because the practice of withholding nutrition and hydration in palliative care settings is very common. As a physician, I have seen multiple patients die due to a palliative care team, following discussion with families, withholding nutrition and hydration from patients.
Unfortunately this is not viewed by many in the medical community as being the scandal that it is. Although I know there are lay people that are fine with this practice, it seems to me that many lay people hold onto a natural sense of morality where this practice strikes them as barbaric. Yet in medical circles, indeed in medical literature, its questioned whether or not this is really so bad, and whether or not, for instance a very delirious patient, is really suffering by having their tube feeding/IVs removed.
My view is that, even if “heroic measures,” or other forms of life sustaining treatment are withheld in a patient with a terminal prognosis, the provision of basic nutrition, hydration, and (of course when needed) pain therapy is just basic human decency. There is a definite trend in the medical community, however, towards viewing the removal of hydration and nutrition as completely acceptable–especially if its artificial, and the public needs to be aware of this.
I think your final paragraph says what I’ve been trying to think.
There is a document they hand out at the hospital with about twenty pages of choices in care you can make. I will have to dig one out to see what is says about withholding food and water, but the point is it’s hard for an average person to process all these choices, to understand what the situations are going to be. And even harder when you’re in the middle of things, with a loved one, and some bored yet overworked functionary, no matter how hard they are trying to be sympathetic, is tapping their foot waiting for answers. Then, you find out the truth, find the rules aren’t all that well followed after all, and it is only life and death at stake.
I too like what you wrote, that barring explicit specifications, food, water, and pain palliatives should be standard.
I will tell another brief tale, my mother at age 79 in the hospital for a back operation for which she had been given (too much) pain meds previously, after coming out of surgery her PCP was basically instituting hospice procedures – that is, euthenizing her right there in the recovery room with excess morphine – without having consulted anyone – until I started shouting at him in the hallway.
I suppose mostly because cost contraints impose on all involved, the quality of care one seems to get at even good to excellent facilities, I consider dreadful. The lack of information, the unavailability of the doctors, the constant low-level errors in everything, comprise malpractice on an hourly basis. The profession hides behind a mask of “everyone dies” and “we’re doing our best”. Then there’s the level of the science involved, and just how well it gets applied in the field. Well, it works sometimes, and I guess you’re at least somewhat more likely to live if you submit yourself to The System than if you stay at home, and we should be thankful for what it is. But OMG if there isn’t room for improvement – and on the opposite side, OMG if there isn’t room to use up a LOT of money, doing that improvement. And then, we all go sometime, even then.
In the case of my father, let’s say he ran up $100,000 in medicare costs in his last ten days. Better care would probably have saved $90,000 of that – and extended his life in good quality for several more years. Worse care would have saved $100,000 of that and saved him ten horrible days. It’s like The System made the worst possible choices on both counts. I think it’s something of a similar feeling that comes through in zombie’s story.
I understand DNR orders. I understand refusing heroic measures. But withdrawal of nutrition and water as a standard seems utterly barbaric. Maybe I’m a simpleton, but that’s going too far in all but exceptional cases?
Great story, thank you. I have some experience with hospice care but mostly hospice care delivered in the home. I am reminded of two cases, one was that of my father. My father developed vascular dementia in the last years of his life. His cognitive abilities gradually diminished starting in his early 80s. He survived sudden cardiac death when he was 69 and had an implantable cardioverting defibrillator. He developed CHF in his 80s. In May of ’08 I flew back for a visit. Dad was pretty flakey, his memory span was about 5-10 minutes long. I flew back again in December and this time he no longer recognized me. Both he and Mom were in poor health. My sister had moved in with them to care for them but soon that became overwhelming for just one person. Dad had to be watched almost around the clock. He would crank the heat in the house all the way up and turn on all the burners on the stove because he was always cold (but refused to wear warmer clothing). He once called 911 because it was cold in the house! We had no choice other than to put Dad in a home. We could no longer even get him to bathe. Dad had hospice care in the nursing home. We all knew he would never improve and would never come home to die. We had his defibrillator turned off. In late August of ’09 my Mom and sister visited him for several hours. Dad drifted off to sleep and died a few hours later. In a way we “let him die” because we had the defib deactivated. But what life was left to save? He was 90 and longer remembered his own children.
The other story is that of a 42 Native American. He was an attorney but had drank himself into liver failure. He landed in the local ICU. He spent the last two months of his doomed life there and consumed unbelievable resources. This patient exhibited classic multi-system organ failure – liver failure, renal failure and gradual pulmonary failure. This guy was doomed. Some days he simply wanted to die. Then they would perform dialysis and he would cheer up and want to live again. There were several idiot, hero-type internists that pulled out the stops to keep this guy alive. In truth all they were doing was prolonging his inevitable death. Almost without exception, triple organ failure means imminent mortality. But the “heroes” dumped gobs of short supply albumin into this guy because his liver no longer made any. They squandered hundreds of grams of scarce IV immuoglobulin G on this guy to keep him from dying of sepsis (not to mention the IV antimicrobials). He tied up an ICU bed and eventually a ventilator. In the end all the interventions were pointless. The only thing they changed was the exact day of his death. What really pissed me off was that we ended up with a shortage of normal human albumin needed for other patients.
Neither my Dad nor the Indian lawyer were ever denied nutrition or hydration. We did all that was reasonable for my father. Far more than was reasonable was done to prolong the inevitable death of the Indian lawyer.
More of us need to come to grips with the inevitability of our mortality. I’m all for intervention when there is even a whisper of hope. Absent this we foolishly squander resources by prolonging death and denying the inevitable. This is NOT playing God…it is being human in the real world.
The Indian’s case sounds insane. I didn’t know someone could live with multiple organ failure. I mean, how many organs have to fail before you actually HAVE to die?
Another question. Weren’t the “hero-type” doctors just doing what doctors are supposed to do – stave off death? As Citizen pointed out above, we needed to pass laws so doctors *wouldn’t* try to keep patients alive no matter what. How did we go from that to “He’s using up too much stuff that other people need. Why is he still around, anyway?”
The other thing I’m wondering about is the patient himself. Did the gung-ho doctors or anyone ever tell him “This is it for you. We’re keeping you alive by artificial means. We can continue to treat you, but no matter what we do you are not going to get better. You will never leave this hospital. You’re going to die right here in this room – the only question is when.” If so, was he capable of understanding?
Good questions Bugs. This Indian was indeed told that the only way he was going to leave the hospital was via “celestial discharge” (i.e. toes up). He knew he was terminal. One can indeed live for a while with multiple organ failure…but not for long and only with a LOT of help. What was needed was a review by an ethics board. The patient would resign himself to the inevitable and would then be dialysed and loaded up with glucocorticoids which would jazz him up. When he felt good he had boundless, but completely artificial, hope for recovery and life. To me this was almost cruel. I was not directly involved in this case and only watched it over a period of a couple of months. I was only involved in the committee meetings after the fact that addressed the shortages of albumin and IVIG (which were nationwide at the time). A child with ITTP very nearly died because the hospital had no more IVIG (and ITTP was one of the few approved indications for the drug at the time). Most of the scarce supply on hand was dumped into this hopeless patient on an “off-label” use.
This patient wanted to live. This is a primal human desire. The hero docs did everything they possibly could but it was folly. They could not possibly alter the ultimate outcome and they knew it. Far too many physicians fail to recognize the difference between “saving lives” and “prolonging deaths”. The public is in the same boat.
“He spent the last two months of his doomed life there and consumed unbelievable resources. This patient exhibited classic multi-system organ failure – liver failure, renal failure and gradual pulmonary failure. This guy was doomed. Some days he simply wanted to die. Then they would perform dialysis and he would cheer up and want to live again. There were several idiot, hero-type internists that pulled out the stops to keep this guy alive. In truth all they were doing was prolonging his inevitable death. Almost without exception, triple organ failure means imminent mortality. But the “heroes” dumped gobs of short supply albumin into this guy because his liver no longer made any. They squandered hundreds of grams of scarce IV immuoglobulin G on this guy to keep him from dying of sepsis (not to mention the IV antimicrobials). He tied up an ICU bed and eventually a ventilator. In the end all the interventions were pointless.”
Look, I’m the first to admit I’m not a real deep thinker. But I find the above quoted more than a little effed up.
My dad is in late stage emphysema and according to your view he is tying up a lot of resources. But he doesn’t want to die. Oh, he’s going to, and specifically from this self inflicted disease, but he doesn’t want to. And I don’t want him to either. So we’re just going to sit around and hog up all the oxygen from people’s lives that could be “saved”.
Here is an insider tip for you: In the end, no one gets out alive. If you “save” a person from cancer, you’re still only moving the date. So, yea, there is actually no difference between saving lives and prolonging death.
You sound like a real sweetheart of a doctor.
“Look, I’m the first to admit I’m not a real deep thinker.”
Well…you’ve convinced me. I’m all for “saving life” where hope exists. I am vehemently opposed to deliberately hastening death by withholding nutrition or hydration (or oxygen). But it’s foolish to try and stave off inevitable death for a few days in utterly hopeless cases. For the most part it doesn’t bother me except in instances where hopeless cases deprive other patients of scarce resources. I’ve seen this too many times in cases of severe trauma, end stage diseases and cancer. The human will to live is very strong and shouldn’t be ignored. Ethically we should not be hastening death, but there are instances where extreme intervention is pointless and futile. At its worst it is immoral if it threatens the care of other patients for whom there is hope.
Dr. Dave, I think you may have touched a raw nerve because you were too inside baseball for a general audience, ie the average person doesn’t have the background to recognize distinctions between typical meds and therapeutics like iv IG which may have more limited availability so folks like the guy above just take you as callous and heartless and dedicated to the bottom line of the hospital or insurer even though you’re probably even less like that than the average doctor.
Ya think? What an absolute douche.
My condolences on your uncle’s passing but more for what you had to witness and grieve over- I can’t help think you should have a bit of anger at Larry for dumping this situation on you. People who have no friends and whose relatives washed hands of them got there by their own doing.
After finding out about his rather unique lifestyle- a man who knew he had HIV, yet remained promiscuous and traveled to Asia (where young boys can be purchased cheaply for sexual gratifications) I just couldn’t help wondering how many people he may have infected with his fatal disease. Yes depressives are often suicidal, don’t have a stong life wish, and perhaps prefer to die quickly. But what about the people he probably infected while living his irrespnsible lifestyle? they did not get to choose his gift of illness or death.
Not to mention all the people he ripped off.
Larry will be missed by one person only –you and perhaps undeservedly so.
Sorry but I have to say what I honestly think about this situation.
Geez, RIP, he was a human being, Loved into existence by our Creator, raised by his parents. Something along the way didn’t happen the way we want it to, but one of my step-relatives was “the monster on the 6 o’clock news” after a short, tragic life, and the family grieved for him.
And I’ve been praying for him today.
Zombie, I’m sorry for your loss.
Jeannette,
Though I do not agree with RIP, I would just like to say that you must be completely ignorant. I have read the comments after reading this sad story, and you seem to want to start a fight with everyone. Let me say this, that Zombie had to experience such a conflict is terribly sad. To be dealing with the sickness (in many ways) and the death of an uncle, and to see and experience what Zombie experienced is sad. THIS IS ONE SITUATION. Sadly, this hospice was not administering the way it should be in many ways. That is every place in the United States. It is one very sad situation, but you keep generalizing. I am tired of seeing your generalizations.
A person has a right to sign a DNR, and Zombie’s uncle did have time, times of great happiness, that he could have changed this DNR. If a person signs a DNR, you must respect their wishes. I believe, as a Christian, that trying to take God’s work into your own hands is sinful. Many people have described doctors as trying to be God, but really, families are trying to play God if they do not respect those wishes. I am not saying that it would not be hard or extremely difficult, but it is still right and legal. And as many nurses have said in these comments, there can be danger to feeding a patient in such health. Saying goodbye is hard, but in such a “vegetable” state, it is almost peaceful to just let go. I know what this is like, and as hard as it was to watch my grandmother slowly go, she was at peace when she went to be with God. I can’t help but have peace in that. She signed a DNR.
i was unaware that spoon feeding someone applesauce was considered a life extending medical procedure. we should certainly tell mothers of infants so that they don’t do anything to extend the painful life of their children. after all, they only have a few decades of life left.
are we in so much trouble that we’re having to ration applesauce? but not morphine? do we have more morphine than applesauce?
i just imagine going to the grocery store and the checkout girl saying, “No you don’t want food, you signed a DNR. What you really want is morphine.”
poor countries where charities are trying to give them clean drinking water, that’s obviously the wrong thing to do. the answer to people dieing from contaminated water is to send them morphine.
(Z)
NO
WORDS,
R
My mother came to stay with me when she was 93.
Though not spared a roster of ailments in her old age, she lived until 3 months before her 101st birthday, pain-free without pain-killers, and in full possession of her mental faculties, except for the last few hours of her life, when she became semi-conscious, and then quietly stopped breathing.
I was both her guardian and health-care proxy.
Without my going into all the details, she spent a number of short stays in the hospital during her last 3 or 4 months, and her wit and good nature won over a goodly number of nurses who had cared for her, many of whom would often come by later in their spare moments just to look in, say hello, and enjoy her company.
The hospitalists, however, MDs or otherwise, were another story. Most, to put it bluntly, were out to kill; the sight of a centenarian seemed to trigger an urge to despatch her as quickly as possible. The most egregious was urging a shot of morphine for a little cough. The doc said it would expand her breathing channels, and a shot was prepared immediately. I never heard of that use of morphine before, yet I kind of believed him, but my mother didn’t seem to be in dire straits, so I said just let’s wait and see first, she cleared her throat, and everything was just fine. I checked later, and what the doc said was a lot of bull.
“The default position is the Hippocratic Oath, under which no harm can be done to a patient, including the withholding of treatment. Thus, there’s no need for anyone to sign any end-of-life care agreement stipulating that the patient desires life-extending measures; that goes without saying. No, we need end-of-life counseling for one reason only, that reason being to convince the patient to consent to having life-saving treatment withheld.”
That’s a very brilliant argument, Zombie. Palin gets a lot of derision for her remark about death panels, but I think you’ve made a very effective case that this is exactly what the liberals want.
My sincere sympathies, Zombie. A few short years ago my best friend, whom I shall call Lydia, passed away at the age of 76. She had been diagnosed a couple of years previously with COPD, following a severe bout with pneumonia. She had no children so she and her husband added me to her next of kin list at the time she went in to palliative care. Most of it was done at their home by nurses who would visit twice a day but the burden was mostly on her husband, though I helped whenever possible and was there for a few hours almost every day. Her insurance would pay for one week of in patient care every two months or so to give her husband a break, which he tool advantage of to get out of town so it was up to me to be her advocate at the in-patient hospice. One of the nicer nurses that came to the house told me I would have to demand that the hospice give her food and water,which both she and her husband wanted, so I did give those orders to the head nurse down there but I doubt it was done on a regular basis. Lydia slept a lot (probably due to the morphine) but could still hold brief conversations. I went each day with water, milkshakes, applesauce, etc., and occasionally I was given some type of runny cereal and an oral syringe by the staff. Lydia was always so thirsty when I’d get there and gladly agree to the water which I would give her bit by bit, literally putting my finger on the top of the straw to draw some liquid in and ten giving it to her. They were supposed to be giving her the breathing treatments as well but one day when I went into a drawer looking for the syringe I found the machine for the treatments in exactly the same spot it had been in when she arrived so I asked and found out they had not been giving the treatments. When she returned home, again, some of the hospice nurses appeared to go along with she and her husband’s wishes but some did not. I even discovered that they were forgetting (on purpose perhaps) the oral antibiotics that had been prescribed by her physician for a painful UTI infection she had acquired while in the hospice. Two days before she died she was alert and we had a wonderful conversation. On the day of her death I was called to come to her side as she had lapsed in to a coma. When I arrived the nurse let me feel for a pulse, which was almost non existant in the legs by that time. She was hardly breathing, then would gasp and take a huge breath. The nurse told her husband she could give her a shot to ease the gasping and within second, she was gone.
Yes, Lydia signed a directive, but it was made clear by both she and her husband that she be offered food and water and continue to have the breathing treatments so I was disturbed by the actions of some of the hospice people. My husband, who has had various serious health issues in the past few years, was even more disturbed and told me a couple of times that it is now his opinion that hospice is in the killing business. He also has a directive (somewhere on a zip drive disk, lol) that says he doesn’t want painful or unusual things done to keep him alive but I believe both he and I would agree that not offering food and water is inhumane.
I’m glad I was able to be an advocate for my friend when she was an in-patient, had I not, she might have died there. She continued to live for about two and a half more months and though her quality of life was not great, she did still fight for life and did, in fact, have some days that were quite good.
Thank you for sharing this story and your thoughts. I’m moved to tears.
({ Zombie }) I am so sorry for what you and your uncle had to go through. My sincere condolences.
Zombie,
I’m profoundly sorry for your ordeal, and my condolences on the death of your uncle. You write that you were not particularly close to your Uncle Larry, yet everything you did demonstrated love. While death is often terrible, there is no better death than to have someone who loves you close by, no worse death than to die alone and unloved. Larry died loved, and he knew he was loved, and that’s important.
I once read a book entitled ‘SS Doctors’ about German physicians who worked in Auschwitz, some of whom made life-or-death selections and conducted hideous experiments, and I wondered how men who took the Hippocratic Oath could do what they did. Same thing with assisted suicide in Europe even now. Same thing with abortion, however it’s rationalized. It seems to me what we are seeing is a perversion of an entire profession for purposes of the State, and no good can come of it.
Having gone through this with my grandmother with at-home hospice care, I have sympathy. But I do not think withholding hydration is cruel. Have you ever been really sick , like a REALLY bad flu? Remember the delirieum, the almost euphoria; you could care less if you live or die? That is what I think dying people feel the last few day-not thirst/hunger etc.
Zombie, may you and your family find healing and may your uncle find peace.
Of course it is a good thing for people to be able to make their wishes for their end-of-life care known and for those to be followed, but when following those wishes to the letter leads to the suffering of the terminally ill, it’s abhorrent.
Worse is when the attitude of “if they’re already dying, hasten them along” takes over. The infamous example of Memorial Medical Center during Hurricane Katrina comes to mind.
http://www.nytimes.com/2009/08/30/magazine/30doctors.html
Zombie, thank you for sharing this story and thank you for taking care of your uncle as best you could. I just have one question, trivial compared to the issues at hand, but what happened to your uncle’s dog?
By sheer happenstance one of the other tenants in my uncle’s apartment building was a member of a “pet rescue society” — volunteers who gather up abandoned, feral or unwanted dogs and cats, and try to get them adopted (rather than sent to the pound where they’ll likely get euthanized) . After three weeks she noticed Larry’s absence and inquired of me about his dog (kind of a small beagle-y mutt). I allowed her to take his picture and put it on their adoption site, and shortly before I flew back to California they found a new owner. So, a happy ending for the dog at least.
Thanks for the update, Zombie. God bless you for what you did for your uncle (and his little dog too).
That is an outstanding piece of writing. I would nominate it for an award in essay or short-form non-fiction. Just superb.
Zombie, I always enjoy your thought-provoking articles and pictures but this one really hit home. My parents died suddenly with no known illnesses. I questioned whether sudden death would be a blessing but not any more. Both of my in-laws required in-home hospice. My MIL fought death; my FIL welcomed it.
I cannot begin to know what Larry meant when he said “help me” but could it have been a request for a faster end to life? This is an alternate view…one that my FIL showed me. He said he had lived a full life and was ready to move on to the next (he had great faith). He refused to eat but was always considerate to those that helped. He dictated his hospice care until he could no longer, then his family stepped in to follow his wishes. It is not easy when you want that person to continue to be a part of your life, and probably not easy when you haven’t been able to discuss end of life issues.
Maybe because we live in fly-over country I found that the doctors, nurses and hospice staff kind and considerate. I hope to never experience the lack of caring expressed by the nurse you talked with at hospice.
May your heart find healing.
I’m a nurse of over 30 years and am frightened by the gradual inculcation of this “Hospice” “care”. We had a hospice nurse come to tell us a few years ago that Morphine should be given no matter what even if it KILLED the patient. I was shocked. I was taught to medicate and monitor for a dropping respiratory rate. People get sedated and when their respirations drop below 12 or so they are over-medicated. Comatose people who are in pain with have rapid heart rates and resp. rates indicating pain/agitation and need for medication. I will not medicate a patient who does not indicate he is in pain or respiratory distress and to administer morphine routinely like that to keep a person zonked out (so they aren’t crying in misery out for water or food)is very close to euthenasia. God Bless those wonderful orderlies. The nurse who was letting them get away with it may have been a silent conspirator.
Hospice nurses are being judged unfairly here. I’ve watched four relatives die in hospice care – two in a facility, one in the hospital palliative care, and one at home – and every time I thanked God for hospice nurses. In all four cases they treated their patients with the utmost care and dignity. No one was starved to death, but neither were they forced nutrients that their body simply couldn’t process. When someone’s body is shutting down, there comes a time where their body can’t process additional fluids, and can’t break down food. You actually hurt them my forcing it. The distinction is knowing when you have gotten to that stage. It sounds like that facility discussed here was badly staffed and incompetently managed. But there are many hospice organizations that truly are lights of mercy.
That being said, the last and best gift we can give our loved ones is a peaceful and painless end. In doing that, we must be fierce advocates. If prescribed treatment is being withheld, it is up to us to fight for it. Palliative treatment does not mean abandoning all medical care. A dying cancer patient can still get insulin because to withhold it would simply make their final days more painful (this was my experience with in-home hospice). You have to be involved, and know the standards of care, and the rights of a dying patient. And don’t be afraid to fire a hospice worker, or find another organization entirely. There are those out there that take their responsibilities to the dying seriously.
Zombie, thanks for sharing what is perhaps the most trying experience in anyone’s life. My father passed away in 2008 from advanced Stage IV cancer. I likely experienced many of the same emotions and frustrations that you did. My father died at home after I removed him from “palliative care” for many of the same reasons you describe.
Having gone through this with a GM with brain cancer, I don’t think they suffer “hyrdation” like me may think of. We gave her ice chips until she could not longer swollow. Then while having pain medication in a patch on her skin, let her die. You know the delirium you feel when REALLy sick (like the flu) , the feeling that you don’t care whether you live or die because you are so sick? That is the feeling I got from her plus euphoria from the pain meds. And it was all her decision, she did not want a feeding tube.
“spend a fortune”…. yup, knew that was at the heart of all of this enthusiasm for a quick death.
And the phrase “going to die anyway” always puzzles me. ‘Cause, we’re all gonna die anyway, someday, of something. If we use the “gonna die anyway” excuse, can’t we use that excuse for anything, including a course of care that hastens death?
So they cut people apart at the beginning and starve them to death at the end.
In a supreme irony, the people who legalized abortion will be forcibly euthanized by those who survived the abortion regime. Not an intentional application of justice–it will be from the life-discarding selfishness the younger generation learned from their elders’ worship of abortion–but justice just the same.
Well done dear zombie. A remarkable work indeed.
Zombie,
Your story brought back the death of a friend of mine, also “from AIDS,” fifteen years ago. He had managed to live for quite a while after diagnosis, thanks to the newer drugs, but had to go to the hospital when some sudden life stresses caused him to contract an infection which would have been minor had his immune system not been compromised.
While in the hospital, he contracted pneumocystis pneumonia—and the breathing tube that was forced down his throat damaged his ability to speak, with the result that for the month he lingered this most verbal of people was unable to say anything. He fought—oh, how he fought—until his body, wasted to Biafran or concentration-camp emaciation, simply gave up.
The slow decline was horrible to watch. To the hospital’s credit—he never made it to hospice—they were attentive to the last. It was, however, sad to think that the hospital had, in effect, killed him by giving him an illness he had not had when he walked in.
Thank you for a very moving essay.
I can’t agree with you. An adult who signs a DNR-depressed or not-has to have that wish fulfilled. To say “Oh, he didn’t mean it, and simply forgot to change it” is treating an adult like a child. Would you say someone who wanted to live in spite of the fact that they were dying, didn’t mean it?
And frankly, dying patients should all get painkillers. Dying hurts. I had toxic shock in high school that was misdiagnosed for 3 days as the flu. I was nearly dead upon arrival at the hospital. I had shocks to the heart, and catheters supplying meds straight to my veins for days and days. I’ve never even been able to fathom that pain. Every cell of my body was in excrutiating agony, for days. Any movement made me want to scream, but I couldn’t. There are people in the medical feild who shouldn’t be, sure. But to say a nurse who deals with the dying every day knows less about it than you is sheer hubris. Especially given you admit not knowing your uncle at all.
Lastly, finances ARE a factor. If you’re dying, tens or hundreds of thousands of dollars simply can’t and shouldn’t be spent on you. Or me. It’s easy to say 4 months is worth $250k to you, but there is a finite amount of money available for healthcare. More spent vainly on the dying is less to heal the able-to-live.
Nor should hospice workers be countermaning medical orders. There is no glory in pain, and while I am religious, I can’t believe they get “points” for keeping adults alive and in pain against their will.
I can see where you’re coming from. However, when my father was diagnosed with esophageal cancer, Medicare refused to pay for treatment and would only pay for hospice, and he’d have lived 6 months tops. Fortunately, his wife’s private insurer stepped up and paid for the treatment, which helped him live 3 good years.
The bill was over $1 million. But according to you, that money shouldn’t have been spent because he was going to die, anyway. I’d love to see you justify that argument to his 15 grandchildren.
But more relevant is the fact that health insurance is for the patient–NOT for society. The patient has paid the premiums and is entitled via contract law, not social compact, to the benefits. If Obamacare survives, then health insurance will no longer be a contract between patient and insurer, but between society and government. And that is where we will be seeing sickening decisions like withholding wanted treatment because someone is “too old” or it’s “too expensive” or “he’s going to die, anyway.” Those completely ambiguous terms will be defined not by law, but by the whim of a pencil-pushing bureaucrat.
And if this comes to pass, it will be because of a value system that puts the nebulous collective ahead of the individual, which is in violation of our Constitution, natural law, and God’s law.
Taxpayer’s comment is excellent and gets to the heart of the ethical issue here. Health insurance is a contract between an individual and a for-profit health provider. We don’t want to have government interposing itself in the decisions that individuals and families make, because then the contract would be between government and the collective society. Socialism includes an agenda to destroy the family unit, as well as the rights of individuals who live in those family units. They try to guilt-trip us into agreeing with such ideas.
Momof4, you say, “If you’re dying, tens or hundreds of thousands of dollars simply can’t and shouldn’t be spent on you. Or me. It’s easy to say 4 months is worth $250k to you, but there is a finite amount of money available for healthcare. More spent vainly on the dying is less to heal the able-to-live.” I recognize that there are finite resources, and it is true that we do in fact already ration, or manage those resources.
But, please consider this, the money is not owned collectively, it is owned by individuals. Socialism has never respected the right of individuals to private property, including money. We can trace the idea of private property to the Ten Commandments, when it says, Do not steal. The only way I can steal from you is if you own something. Therefore our Judaeo-Christian heritage teaches us to respect the private property of others. That alone should kick the government out of healthcare.
Correct, it is a legal contract with the insurer. Which means, then, that you have no problem if the insurance decides they aren’t paying for treatment as long as they have an out in the contract? Who paid that $1 million-it wasn’t your grandfather. It was you, and me, and thousands of others. Frankly, my life isn’t worth $1 million now-and I have hopefully 50 years left to live- and I’d really hope someone would have the sense to recognize that if I weren’t able to.
Very emotional and thought provoking story. Thank you. But I have to ask – how do you know that Larry’s “Help me” was meant as a wish to live? Maybe he meant “help me die, I’ve had enough of this”. Maybe he thought the morphine shot was medication to prolong his life and that is why he shook his head. You’re assuming he was thinking clearly, which is unlikely considering his condition. I also have to ask – if its ok for staff to go against the orders and feed and hydrate, is it ok for them to go against other orders, or only those orders we think are ‘wrong’? If Larry were suffering horribly, would it be ok for Nurse Kervorkian to up the morphine dose?
Actually, I don’t know what he meant. I hope that was clear from the essay. But then again, the nurse didn’t know what he meant either. But her auto-pilot decision was to err on the side of accelerating his death. Whereas my decision, which I only arrived at unintentionally after it was too late, was to err on the side of life-preservation.
Then again, we both could be wrong. Maybe he meant “Help me remember the name of the bass player for the Velvet Underground,” or “Help me adjust my pillow a little to the left.”
Yet since we don’t know, and since it could have been a plea to help him stay alive, imagine his frustration when we ignored the plea he struggled so hard to make.
As for the morphine, I had more to say about that, but the essay was too long as it was. My impression was that the doctors and the nurses gave morphine for any and every reason. The slightest sound emanating from any patient was considered proof positive of extreme pain, and was cited as rationale for more morphine. Half the time the “pain” seemed to be nothing more than perhaps a tight shoulder muscle that could be relieved with a 30-second light massage, or perhaps needing to burp, or some mild pre-existing condition like arthritis in the knee. In many cases, the moan or groan could have been for anything at all — a bad dream, just general grumpiness, a feeble attempt to clear the throat.
But in every single instance I saw, any vocalization was cited as evidence of the need for massive doses of morphine.
Left out of the essay was another detail told to me by an orderly: He said that if all the doctors really wanted to do for these hospice patients was relieve pain, then a better route was to prescribe Fentanyl patches, which are stronger than morphine, but don’t cause anywhere near the amount of sleepiness or delirium. But, the orderly claimed, the doctors only rarely used Fentanyl patches, and instead preferred morphine for the exact reason I quoted in the essay — to keep them knocked out so that can’t complain about what was going on.
Thanks for your reply. You’re right, I may have been reading into your words. I’m sorry you had to go through this. I hope you will, if you haven’t already, report this hospice to the state department of health or patient advocacy, in writing. You may not have been able to help Larry, but maybe others would benefit. Its really unbelievable that this goes on. Thank you for making me think again about my living will.
Thank you so much for such a gripping personal account, and my sincere condolences for your loss.
I normally don’t comment on other sites, or even really read them, but your article was just too compelling to not read.
You bring up more than excellent points that some people make end of life care judgments at trying times in their lives, and those decisions should certainly be reviewed later in life, especially if the patient changes their mind in the hospital, as it comes across that your beloved Uncle may have done.
And blessings to the hospice workers. Just because a piece of paper from the hospital says to do something, doesn’t make it right. Those hospice workers may have given family members precious time and memories that some end of life decisions wouldn’t.
Thank you again for your insight.
That is a heartwrenching account, Zombie.
Hy mom and dad died within about a year and a half of each other in 2001 and 2002. They were 80 and 81 respectively. She died of heart disease and he of cancer, including a brain tumor. I haven’t read all of the comments here yet but I noted that they both lost the desire for food a few days before the end.
Wow, Zombie. Just, wow. An excellent account of a heart-rending experience. I wish your uncle peace.
Giving food and water are corporal works of mercy, are not medical treatment and so may not be forbidden by the “professional”. Larry’s nephew ought to have fed him at the hospice, after all, he was paying big bucks for the stay. The fact that Larry was ingesting the food voided the directive to withhold food.
What right do you have to override patient wishes? You and no one else has the right to tell a patient they must eat or drink. I subscribe to the theory that if you are willing to tell your neighbor how to live than you had best be prepared to live the way your neighbor desires as well because at some point in time the screw turns.
The fact that Larrys choices make you uncomfortable, does NOT mean you have the right to make him give up his choices so you have no discomfort.
I’m sorry for your loss Zombie.
The problem for all of us is that we really do not know what we’re going to face until the very end. The advance directives may give the doctors some guidance, but they’re never quite enough.
Modern medicine can keep a body alive and functioning long after the brain is mostly dead. This problem will get worse as the state of the art improves.
That is why family is so important. That is why designating someone close, who knows and cares about what you’d want, to make decisions for you if you’re not able to communicate, is so important.
This is one of the ugliest jobs there are. There are no good answers; only truly awful decisions. You clearly know how terrible and heart wrenching this is. Let us do all we can to keep government out of this decision.
Zombie, now you see the ugly side, the demonic side, to the world system. God warned that, “All who hate Me love death,” and now you see for yourself what that means. There is a war going on here, and the same power behind the jihadists is also the power behind the so-called medical professionals who killed your uncle. You cannot remain neutral in this conflict, for such neutrality simply does not exist. You will either come to the Lord, or you will unwittingly side with those you rightly identify as the enemy. I be you, Zombie, come to Jesus and see the Truth for yourself.
Don’t any of you believe in God and resurrection? Or reincarnation? Why so sentimental about a body? Keeping these husks around amounts to stealing food from the mouths of children. Or a college education from one who can benefit from it.
I’m of sound mind, not depressed, and when my time comes don’t give me palliative morphine. Give me the hot shot and DNR.
Self triage my friends. For the sake of the next generation.
A human being should be able to change a diaper, plan an invasion, butcher a hog, conn a ship, design a building, write a sonnet, balance accounts, build a wall, set a bone, comfort the dying, take orders, give orders, cooperate, act alone, solve equations, analyze a new problem, pitch manure, program a computer, cook a tasty meal, fight efficiently, die gallantly. Specialization is for insects. – Robert A. Heinlein
It is because I believe in the Resurrection that I do not dismiss this mortal coil as a mere husk. It was designed for eternity, and even if worms do eat this body, even so in my flesh shall I see my Lord, for my body is His Temple. As it is, I pray that God grant me the grace to pass into eternity without tasting death. Yes, may the Lord return and make this mortal flesh immortal!
I could not read all the touching posts here, but the forty or so that I did read failed to mention the clear conflation of two issues.
1) We have a person’s right to die
2) We have society’s condoning of murder.
The world is cleaner when sick people die. The world is dirtier when people”assist” people in the process of dying.
Jewish Law is instructive here. One may not remove a respirator or feeding tube, but we are not obligated to start feeding or insert a respirator. It is a distinction that is not observed by American Law, but should be. Yes, it is painful to die of starvation or dehydration, but at least no one has raised a hand to hasten the death. Pain relief can kill someone, but it is permitted under Jewish Law because of the suffering, even if it hastens death. Period! That is all I know, but it makes some sort of sense. It does not permit raising a hand to kill, but it does not ignore the suffering of pain. It is a point of view that avoids allowing others to kill you or your loved ones. It preserves the crime of murder though it suits society’s convenience to have you gone.
Zombie, you had a choice, and you made the right one.
My condolences for your loss.
My personal story
I have what may be a unique perspective on this subject. I have been in a coma and the doctors did not expect me to survive. This occured back in 1998 adn because I did not have an advance directive my parents were left to make decisions for me even though I was almost 25 years of age (I was only a few months from my 25th birthday. When my parents arrived at the hospital 6 hours from where they lived the doctors informed them I would probably not survive the night. Fortunately, my parents decided it was ok to have me on a respirator and be fed via IV. Since then, knowing there is a fair chance that the situation will likely occur again I have now assigned my mom Medical power or attorney in the event that I can’t make decisions for myself. This decision haunts me because while trust mom completely, I hate to think that in the event that I again go into a coma or close there to my mom will be forced to decide something so grim. I love my mom more than I can even convey and trust her completely but don’t want to cause her pain by the need to decide that my life is ultimately only to be left in her hands and the Hands of God (though I cannot imagine hands I would rather be in.)I have discussed this with her and told her that the one stipulation being that if a machine is th *ONLY* thing keeping me alive, if my body has ceased to be able to sustain my life on it’s own then I don’t want a machine prolonging that scenario. This wasn’t the case when I was in a coma because my heart was beating on its own and my brain still showed activity. I was not dead yet, I was only in state that I was unable to wake from for a time. I did lose 30 lbs and at between 6’3″ and 6’4″ I had gotten down to 130 lbs. It has been since August 1998 since I went into the coma where I remained for a weeks time and now am very much still alive. I am very thankful for this not just because I am still alive but because I have been able to be a part of my nephews’ and neice’s life because I survived. Here is the rest of my story:
Only read this if you have a few minutes because it is quite long but I hope you will see why I chose to include all the detail.
Those of you who know me well, know me, but some of you may be unaware of my full reality. See, i’m a walking miracle. The only reason I’m still walking this Earth is because God has some purpose for me (even if I am unaware of that full reason as of yet.) Now yes, we can say that being alive is proof that we are all walking miracles, and while I agree that life in general is a miracle there is more to the story with me. I hope that you will will realize I tell this story not because I want attention of any type, but rather because God has put on my heart the desire to share the proof of his love and power through the story that I have lived. Please read all of this and hopefully you will see what I mean.
My very close friends already know this, but some of you may not be aware that I have hydrocephalus. Form the latin hydro meaning water and cephalus meaning brain this means that MY brain produces too much of the cerebral spinal fluid that everyone’s brain produces. This condition can occur from an injury and be a temporary situation, but in myself it is a congenital defect (something that I have had since birth). I have always had hydrocephalus and will until I pass from this earth. That being said, it was not discovered in me until the age of 6 or 7. By this time a doctor noticed that my motor skills and coordination were below the level of most kids my age. The doctor recommended we see a specialist, a neurosurgeon, to have me checked out. What the doctor discovered was that because of all the excess fluid that my brain produces and the number of years that it had gone undiagnosed my brain had been compressed against my skull to less than 1″ thick. At this point I should have been dead, a complete vegetable, or at least severely disfuntional. The miracle is that the only things ever affected in me were my motor skils and coordination, for which i underwent physical and occupational therapy for a number of years as a child just so that I could continue to do the things the other kids did, even if i did have a little more difficulty with the physical stuff. I had a couple of coaches in elementary school: Coach Davis and Coach Brown once Coach Davis moved. We had an obstacle course at my school which had a number of different challenging things: there was a wall that we had to climb over, a series of several tires set upright and buried in the ground at the base to hold them steady that we had to leap across, a set of barrels that were stacked together that we had to scale and tires on the ground that we had to run through. As a result of my hydrocephalus and the lack of coordination it caused I had trouble on the obstacle course but both of my coaches helped me to balance on the obstacles and scale the wall. I would do it but they would help me balance on the obstacles and give me a little bit of a boost when I needed it to scale the wall. I had more trouble than many of the kids but I still was able to do it. I was always in advanced classes proving that my cognitive processes were not affected as a result. I had my first operation on my brain in the first grade when my Ventricular peritoneal (VP) shunt was installed. This is a tube that runs from the middle of my brain into my peritoneal cavity in my abdomen to drain the excess fluid so that my head doesn’t explode or my brain doesn’t get squashed or both.
Now before you say that there is no way that my head would have exploded, one time when I was in the hospital, there was a young girl there who also had hydrocephalus. I have a slow progressing hydrocephalus meaning that it takes a longer time for the level of fluid to build up in my brain. This little girl, however, had a much more rapidly advancing hydrocephalus than myself. You could visibly see her head expand from the excess fluid building up on her brain. I remember the doctor trying very hard to control her hydrocephalus and even at times gently compressing her very young skull back to normal. I was so worried for her, but they did save her.
Each time I had one of the operations on my brain as a child I ended up missing a great deal of school. I wasn’t, however, saved from schoolwork because mom and dad made sure that my teachers compiled my schoolwork and it was brought to me by one of my parents while I was in the hospital. Keep in mind that I grew up and lived in and went to school in San Angelo, TX and all the operations I had as a kid were done at Lackland Air Force Base in San Antonio(4 hrs away).
My parents were great. Each time I had one of my operations my parents did a few things: First, they made the doctor come and explain to me in a way that I could understand exactly what was going to happen to me but in a way that I could understand at whatever age I was. Second, they came and told me that we needed to pray together that God would make things ok the way that he needed them to be and if this meant that if it was time for me to go to heaven then that would be Ok. I of course did this with them and while I believed what I as praying I did it because Mommy and Daddy told me to. I never really thought about the seriousness of what I was praying until later in life. Now because I had my brain operated on, my head got shaved and I ended up with some very large scars. The last thing mom and dad did was to go to my class prior to me going back to school and explain that I had brain surgery so my head was going to be shaved and I would have some scars and might look kind of funny. They told my class it was important to please not laugh at me. My classmates were awesome. Not only did they not laugh at me but while I was still in the hospital prior to being released and going back to school, my classmates, on more than one occasion, made handmade cards for me telling me to hurry and get better and come back so we could all play together. I still have the cards that my classmates had made for me. I have reconnected with some of my earliest childhood friends one of whom now lives down the street from me. He told me when we reconnected several years ago, because of both my nephew and his son being on the same soccer team, that when we were kids he was always watching my back and if any of the other kids ever messed with me he would have and did take it upon himself to straighten them out. I had known we were good friends, but I never knew that he was always watching my back.
All but one of the 12 operations I have had on my brain were as a result of the hydrocephalus and I’ll get to that other one in just a second. 6 of these operations occured when I was a child and the other half have occured since I turned 25. The one operation I had on my brain not resulting from my hydrocephalus was as a result of well me being short. In my home town we have all 3 Concho River’s that run through the town and when I was a kid, we always had Fiesta Del Concho. This was a huge community event which also drew a lot of people to San Angelo from the surrounding communities. Vendors of all different varieties would set up booths in the area designated and sell their wares. The food booths available were always set up along Rio Concho Drive (River Drive). When I was in the 2nd grade my whole family was at Fiesta del Concho and we spent most of the day there. There were lots of things available for purchase and fun activities for kids. After my family had been there for a number of hours we decided it was time to get something to eat and we were walking along River Drive deciding on what to get. Keep in mind that these booths were very simplistic consisting of of 2×4′s nailed together to build the frame with plywood sides on some and plywood countertops. As we walked up to one of the booths I ended up walking right into the corner of one of the countertops (it hit right between my eyes but above my eye level so I didn’t see it. Like most kids I screamed in pain. My parents managed to calm me down after a matter of minutes , but surprisingly there were people around us who were laughing thinking it was funny that a little kid had hurt himself. My parents were so mad.
That same summer, my family went to San Antonio for our annual vacation. Our vacations at the time consisted of going ot San antonio (4 hours away from home), staying at a La Quinta just off the base and going shopping. My sisters and I thought the La Quinta was awesome because it had a pool that we could swim in. One day we were swimming and Grandma was down at the pool with us. When it was time to get out, Grandma started drying my hair with a towel and I said, “Grandma stop, it hurts”. She replied, “what’s wrong with you child ?” so I repeated that my head hurt. She called out to my mom who was in the room and told her my head hurt so mom asked me , “What’s wrong with you child?” and I again told HER that my head hurt. Well, being that I had already been diagnosed with hydrocephalus my parents decided I needed to go to Lackland Air Force base and be checked out. They did a CT scan and discovered that there was a blood clot the size of my adult fist on both sides of my brain. I was of course admitted immediately and surgery was performed to remove the blood clots. They had to cut off the skin , cut out the bone, remove the blood clot and make sure that all peforations of blood vessels were repaired. Afterward they sewed the bone back together with wire and sewed the skin back in place. After the operation, I had a wire sticiking out of my head which they had to cut off. The removal of that piece of wire was quite painful. I believe it was during this general timeframe that a valve was installed on my shunt to regulate the flow of the fluid from my brain. At the time the valve was put in my chest and it was installed while i was awake because it was something that needed to be done immediately. They used local anesthetic , but I felt everything that the doctor did and it hurt immensely. I remember yelling at my doctor the way a 7 year old would yell at someone back when I was that age. I told him I hated him and he was the meanest man in the world. There was a male nurse in the operating room and part of what he was doing was holding my arms down and holding me still. I even went so far as to tell the doctor, “now the nurse, he’s just doing his job.” I wasn’t mad at the nurse because in my opinion he wasn’t the one hurting me. The logic of a 7 year old right. I realize now that the logic didn’t work because the doctor was also doing his job. Mom and Dad did make me go to Dr McKracken afterward and appologize to him for saying all those mean things to him. Though I had gone and appologized as a child, I have made an attempt to locate him again so that I can thank him for all he did for me as a child. Unfortunately, I have been unable to find him. I had my final operation during my childhood years in the 5th grade and I had my annual checkups to include the CT scans to ensure my shunt was working properly. I periodically had headaches when I was a child but nothing on the magnitude of the migraines I now experience 24/7/365.
The summer prior to my Junior year in Highschool, my Boy Scout Troop went to the Buffalo Trail Scout Ranch in the Davis Mountains. Most of the badges they offered were ones I had already earned so I had a great deal of free time on my hands. There was a young lady a couple years younger than myself working at the camp and I must admit I was quite taken with her. She worked in the trading post with her aunt and I therefor made every excuse to frequent the trading post. One night, I got very, very sick. I ended up vomitting all night long. I moved my cot outside the tent and stayed there but did not wake anyone to tell them because after all there wasn’t much they could have done. I didn’t want to interrupt their sleep just simply because I wasn’t well. When everyone awoke the next morning they found me outside away from tents and when I attempted to stand I couldn’t do so on my own. Despite drinking water and Gatorade all night long, I was completely dehydrated when they woke me because everything that I drank that night came back up. In addition to getting very sick that night, this night is when my migraines began but I was very scared because the last time I had experienced headaches of this magnitude and gotten this sick at the same time was the last time my shunt had failed. I was taken to the medic shack at the camp by my troop leader who basically carried me with the help of one other person all the way there. I was so dehydrated that I couldn’t walk on my own. I told the medic, Ellen Kimble, I was scared because i was experiencing the same symptoms as when my shunt had last failed. They wanted to Aerovac me from the camp to the hospital in Marfa, Tx but the high winds made it impossible for the copter to arrive and pick me up safely. I stayed at the camp all day on IV fluids until the ambulance came to get me later that day. That evening the ambulance took me to the hospital in Marfa, Tx and I ended up remaining in the hospital there for half of the camp. They determined that the reason I had gotten sick was at least triggered by food poisoning but kept me for monitoring because of my fear that my shunt was failing. I remember Ellen coming and checking on me each day and spending as much time as she could at the hospital with me.
I continued to experience migraines thoughout my senior year in highschool and then they continued while I was at Texas A&M. They started becoming more frequent and more severe in October 1997 but I thought I was just experiencing a particularly bad spell wtih them. Unbeknownst to me, my shunt was starting to fail and I was feeling the effects. I suffered through until August 12 1998 when I came home and as a result of a particularly bad migraine I stayed in the dark in my room with no light and no sound for 3 days. I kept the door shut to keep out as much light and sound as possible. I only came out of my room to basically crawl to the bathroom or to the fridge for a drink of water. I shared an apartment with both my sisters but my little sister had gone home for the summer. On August 15 my big sister came out of her room in the very early morning and when she did so her dogs rushed to my room (they knew something was wrong). My sister had kept them in her room each night so that they wouldn’t bother me. She came to get them away from my door so they wouldn’t bother me and when she did so she heard me breathing funny. She became concerned and knocked on my door to check on me but getting no response she came in to physically check on me. She attempted to wake me but couldn’t because by this point I was already in a coma. My big sister (being my guardian angel), kept her wits about her and called 911. She told them I had Hydrocephalus and a shunt and wouldn’t wake up and that I needed help. She continued to keep her wits about her until I was safely in the care of the paramedics. When asked if she was going to ride to the hospital she said no and then she called mom and dad and told them that I was taken to the hospital and wouldn’t wake up. Only after taking care of me and ensuring that someone was helping me did my big sister lose it when she called mom and dad. I love you Christy (I hope you will forgive me for posting this but I know I can never thank you in person because it was too difficult for you). My big sister is truly my guardian angel. I remember going up to my big sister when I was released from the hospital and trying to thank her and hug her. She told me she would never talk about that and because her dogs had alerted her to me, I went and hugged and thanked them instead.
I was rushed to the hospital and after tests to confirm what was wrong I was rushed into surgery and underwent more brain surgery. Over the course of the next week, on account of the fact that I wouldn’t wake up from the coma, I underwent 3 operations on my brain. After a week, I finally came out of the coma but remained completely incoherent for a second week. On the 3rd and 4th week in the hospital, I started undergoing physical and occupational therapy to reteach me how to live. I had to be retaught how to roll over, how to sit up, how to stand and walk. I had to relearn how to manipulate my hands and feet and how to feed myself. This part was embarrassing because I would attempt to feed myself and either the food would dribble out of my mouth or my coordination would prevent the food from reaching my mouth without landing all over me. At the age of 25 I even needed to have help bathing. My therapists had to physically help bathe me for awhile (this was particularly embarrassing because most of my therapists were female and extremely beautiful.) After a time, my therapists were allowed to remain outside the door and just ensure that I didn’t need help.
After a month in the hospital I was released to outpatient care and mom and dad brought me back to San Angelo where I continued physical and occupational therapy for another several months. Thanksgiving 98 we were invited to share thanksgiving dinner with friends and upon arrival at their house I began talking to Art. I told him that I was experiencing the worst migraine I had ever had and he told me to get some medicine from his wife Pat. After she gave me some medicine she told me to go and lay down in the bedroom and that was the last thing that I did that night. When the night was concluding my parents came to wake me and had to rush me to the hospital because my shunt was again failing and that night I underwent more brain surgery. My nephew was born May 1999 while i was still recovering and while my sister worked during the day I became his full time nanny. While I was taking care of him, he was in turn helping me to get better from my surgery. We are Best Buddies now and totally inseparable.
I went several years without anything going wrong with my shunt but my miraines became more frequent because of all the trauma to my brain. Then in January 2005 I believe it was,, my shunt again failed and I underwent yet more brain surgery. When I awoke in the hospital i didn’t know where I was or why I was there and became scared. I managed to figure out I was in the hospital after a time because i saw medical professionals wandering the hall. I got the attention of one of the staff and asked if there was any way i could make a call. I attempted to call all my family but got no response from any of them until I managed to get in touch with my big sister in Dallas and inquire why I was in the hospital. She told me my shunt had again failed and I had more surgery. After spending a lot of time in the hospital with me they had gone home to get some rest. They came to visit me later that day and I can remember my nephew looking at me laying in the bed with all the tubes and wires attached to me and though he wanted to climb in the bed with me, he was scared. My little sister and my mom told him it would be ok to get into bed with me but that he needed to be careful of the tubes and wires. He laid down with me and snuggled. When the family decided it was time to leave they told him and at his young age he looked at them very seriously and told them, “NO!!!!! Ineed to stay and take care of my uncle.” I can’t tell you how much I loved him for that. I was so impressed with the way he handled it but told him that he should go with them and he could come back and see me later and when he did he could bring me a stuffed animal to keep me company.
Since then my migraines have become literally 24/7/365 but as of yet no further shunt failures. I do pray everyday that God will ease the pain of my parents who are in chronic pain and ask if it be his will to allow the migraines to pass from me at least for a time. Thank you Lord for loving me enough to keep me around.
God Bless all of you,
Steven
Wow. I read all of that, and I’m sorry for all your trouble. I don’t know what else to say.
Disturbing in so many ways. I had a nasty experience with hospice care with my mother. As a physician, these things are quite scary. Soon a directive like this won’t even need to be signed by anyone. It will automatically be produced and sanctioned by the State and come with your birth certificate. (Maybe Hawaii residents will be exempted!)
Hmm.
1. Signing a DNR is silly, no-one knows what will happen in the future. It’s a stupid gamble to take, and an admission that the system is a cowardly, moral bankrupt mess.
2. DNR (starvation & dehydration) is a criminal and barbaric method of Euthanasia.
3. There is no solution that fits all. Some people need help to die to avoid a terrible death, others don’t. Euthanasia quickly becomes murder in the same way that refusal to euthanise can end up as brutal, sadistic torture.
It depends on the individual case — people ending up in horrid situation is never right.
Will any rule we can make here be abused? Yes, without Euthanasia, we risk having doctors who may keep patients alive to make extra money with expensive procedures. With Euthanasia we risk that many potential murderers are getting an easy way to succeed(although, they already have that anyway right now…!). Neither is good or less bad than the other option, both have the potential for evil and good.
But, we’re humans, we have a free will and an aspiration to control our destiny, and this is another freedom that humanity needs to learn to handle in their quest to become the masters of themselves.
I don’t think that there is a way around making those decisions eventually if humanity aims to continue to refine the achievements of the Enlightenment, and in the end, our considered and informed decision is superior to letting happenstance deciding for us randomly as we’re doing right now, often getting exactly what we don’t want or need instead of being able to chose the best option.
I have a ton of positive adjectives about the essay, but it feels out of place to use them. For some, it’s easy to think about death when you’re surrounded by so much life and it seems far off. It’s harder to face death when it’s in the room with you, so to speak.
If I ever need hospice care, I want it on record that it be done by devout Catholic Mexicans and Filipinos.
Lord of the World, a novel written just before WWI predicts this sort of thing.
Zombie,
I’m very sorry to hear about your uncle and the situation, in general. My condolences.
I’ve been reading many of the responses, though, there’s so many, I’m having trouble keeping people’s opinions straight; for I am a simple woman. Because of this, I suppose I’ll weigh in with my two cents (God help us, for all that’s worth.)
I’m not writing this from an emotional place, nor from a medical perspective. Everything on here has been so emotionally charged, I thought it best to step back and ask a question, “What does God want us to do?”
Hmmm… I’ll be the first to admit that I’m not the sharpest tool in the shed, but, when in doubt, I try to ask that question. After all, we’re only here because He wills it.
It’s hard to ask what God wants. So much of the time, it’s a lot easier to focus on the physical, emotional, and social strains…the ones that are immediate and press the most. Pain hurts. We want it to go away. I should know, I just stubbed my toe on an inconveniently-placed baby gate.
I can certainly understand trying to respect others wishes. Respect is necessary for humans to function together. But there are certain times when one’s wishes may not coincide with what Jesus is asking us to do. This sounds unfair, inhumane even. Especially in the case of someone like your Uncle Larry, someone suffering so excruciatingly.
The thought that God would ask us to suffer is both strange and inconceivable, but I think He asks us anyway. Not because he hates us, but for deeper meaning. Possibly to bring out humility, patience, or compassion in ourselves and others? He guides us to see what He wants us to see, and pain and suffering are sometimes another way for us to learn and grow closer to Him.
While you’re shaking your head over my previous paragraph, I’ll test your patience and go a bit further, and speak to another thing God asks us to do…respect life. No matter how long He’s given us, the time we’ve been gifted is meant to be cherished and cared for. We didn’t give it to ourselves. And if we didn’t give it, there’s an excellent chance that it’s not up to us to hand it back any which way we please. Read this as: Suicide, no matter how it manifests itself, is a bad idea.
“But Paige, these people aren’t committing suicide. They’re refusing treatment. That sounds very foolish.” You’re right, I can be a fool, and treatment for medical conditions is a really good thing. And as far as I’m concerned, if you don’t want to go through extensive drug treatments, operations, etc, you most certainly should be able to refuse. But when your cause of death is starvation….unfortunately, you’ve beaten God to the punch.
Food and water are necessities for life, not extreme treatments. Why don’t we just act like grown-ups, quit complicating things, and instead of saying “People should be able to refuse treatment.” say, “If people are suffering and want to cut it short by offing themselves, then ok.” I could respect that answer a lot more, even if it’s not right.
Our lives are not our own. Our time is not our own. Feeding the dying may be inconvenient, expensive and time consuming. But maybe, just maybe, those last few moments or days, are the last times the dying have to commune with the Lord, make peace or repent. Compassion and the Lord work together and in mysterious ways.
Here’s to you Zombie, and may God go with ,ou and your Uncle Larry.
I think this deserves a Pulitzer Prize. Seriously.
In any event, thank you — and condolences.
First, I think it is unfortunate that you are cashing in on your uncles death for your on political agenda. Second, Your uncle could have changed his DNR. You make it seem like you are stuck with the decision you made 40 years ago, but that is a intellectual dishonesty. Third, the hospitals and hospice are legally bound to follow your instructions, and they could be sued if they do not. You make is seem like the nurses or doctors are doing something wrong because they are following the law and the persons own instructions. What good is the right to make your own choice and live free if others will then make if for you (I thought people here liked independence from government)? I Lastly, while your uncles situation was horrible, it is easy to imagine a horrible outcome from the opposite facts. What if your uncle was in horrible pain and just wanted to be put off the feeding tube, but the law required he still be fed. That is an equally horrible possibility. Do you suggested that we let the nurses or hospice workers make the decision themselves on a case by case basis? Otherwise, we need a firm law like the one that mandated the medical community followed your uncles wishes.
??? WTF ???
“Cashing in”? “Political agenda”?
Unbelievable.
You wrote the article and put it out there on a blog that has a space for comments. On a very political orientated blog. Your post was tilted with a very distinct political agenda. However, “cashing in” may not have been the most appropriate term. It does seem clear that your article meshes with this sites general social and political agenda. I have compassion for your loss as one human to another, but I do not agree with your article,s assertions, and I do believe you only posted the article to serve your political agenda.
Where did Zombie state his/er ‘political’ agenda on this post?
WHERE?
Oh goodie! I hope I get to be the one to pull the plug on ‘compassionate’ and all seeing all knowing Brian N.
;p
Brian, you are grossly out of line. If you bothered to read the article, you would know, several times over, that Zombie had this situation thrust upon him/her. That Zombie thereafter (and during) did some hard thinking about it all, and distilled it into this essay on a non- or barely-compensated blogsite, is hardly “cashing in.”
What’s really going on is this. You strongly disagree with Zombie on some of the issues broached (and that is fine, in itself), and “therefore” (you “reason”), Zombie must be “cashing in.”
Really, one wonders how, to such as you, someone could possibly write any essay about these events while (gasp) having a point of view, without thereby opening oneself up to Brianesque charges of “cashing in.”
Silliness.
I do believe he is using an emotional event in his life to push his social agenda. “cashing in” does have an monetary association, and I did not mean to imply that. However, now that I think about he probably got paid for the article.
Yes, Brian N, I’m sure Zombie planned his Uncle’s demise…no, wait, he made this all up just for the fun and moula of it!
I love how the heartless Lefties will bring up people without “medical coverage” as ‘dying’ and those people with “pre-existing” conditions as “poster people” for their cause but when someone just shares a personal story from their heart and soul…that’s “political”. lmao!
I am an RN and find the hospice care described as appalling. I take care of many patients dying of many different things, and if they are a DNR, the only thing I do differently is to not call the Code when they stop breathing or their hearts stop beating. I still turn them every 2 hours. I still answer their call lights as quickly as possible. I give them pain medication if I can tell that they are in pain. I give them nutrition as long as they can still swallow. If they can’t swallow, it would probably cause them aspiration pneumonia. I clean them, hold their hands, and offer to pray with them. I call Respiratory Therapy to change the way they are getting oxygen when their saturation level goes down. Dying patients are still people and need to be taken care of and respected.
I have taken care of my husband’s aunt with Alzheimer’s for 4 1/2 years on Hospice. She never ended up with tubes, and she never ended up on morphine. My mother has been on hospice for about 5 years now, and we still feed her. We won’t be putting a tube in her to give her nutrition when she can’t swallow anymore. She can not talk or do anything for herself and I can assume that it is very frustrating for her. We will keep her mouth moist and keep her as comfortable as we can, but why would we want to prolong this frustrating existence for her?
The hospice workers that come out are LVNs and RNs. One of them developed such a good relationship with us that when my sister died, he wanted to come to her funeral and even drove my dad there and back. I rarely think that they aren’t doing a good job.
When my sister was dying from cancer, she was on Kaiser Hospice for about the last month, but only needed their care for about the last week. They were very caring, but they couldn’t figure out that morphine rectally was more invasive than using her portacath. So yes, some Hospice workers have a lot to learn, but they probably won’t learn it until they have a family member needing Hospice care and comfort.
We can’t assume that people sign Advanced Care Directives just when they are depressed. Most people think about the signature for quite awhile before they actually sign. I’ve seen many patients on ventilators for months and feel sorry for both the patient and their family. I wonder what guilt they have stored up in themselves to not be able to see that they should let their family member go. It isn’t comfortable to have a tube in your throat breathing for you, and then to have a hole cut in your neck to have the machine attached to. You can’t make any sounds and you have to be drugged or you would put the tube out. I certainly don’t want that for anyone in my family who is terminally ill, nor for myself.
Thoughtful article. I agree this article should get a lot of attention.
It inspired me to write about my own situation. I am not anywhere as good a writer as Zombie, but if interested in another perspective go here.
http://darkbloodyground.blogspot.com/2011/02/interesting-read-about-end-of-life-and.html
Has Brian already signed his DNR, as in “Does Not Read”? How he could come to the conclusions he did makes me wonder if he is having his own bi-polar moment.
My condolences for your loss and thank you for a very thought provoking piece.
What is the fallacy in my logic. If you want government to not regulate your life and death, than the hospital has to follow your instructions. If you want government and regulations dealing with your unfortunate demise than the doctors and nurses will have more leeway in their decisions. I am grossed out by the fact the hospice workers were ignoring the peoples final wishes. Those people had already made up their minds, who are these workers to decide otherwise.
Did it EVER occur to you that Zombie’s Uncle had suffered from mental illness? The guy was full-on mental by all of his actions and life-style and he probably should have been institutionalized to get him grounded and centered with some much needed therapy. Maybe his Uncle was molested as a child by another man. Who knows the details as to how Uncle Larry turned out and who are we to judge Zombie’s heart-wrenching ordeal through the whole process of what he discovered of his Uncle’s crazy life?
Grow a damned soul AND a brain.
Thanks for your reply – sorry it is so late to the discussion, but I think Brian’s “these workers” comments sums up his view. To Brian, these health care workers, human beings first, workers second, are just another form of factory workers, who’s first job is follow orders. I will raise a toast to Brian’s health – he’ll need it should he encounter health care “workers” under our new Obamacare.
I’m not going to analyse Zombie’s article point by point, but there are some things Zombie says that raise red flags in my mind. Also, I’ve not read all contributions to this discussion, so I apologize if some of this is repetative.
First of all, given how little Zombie admits he knew his Uncle Larry, would it not be impossible for him to ascertain his state of mind when Larry signed the 1996 directive or his state of mind over the years that he never signed another directive negating the instructions of the first? The notion that Larry signed the directive in a state of depression and that he never signed another negating the first because he promptly forgot about it or never gave it another thought is pure speculation. Nevertheless, regardless of how correct Zombie may have been in ascertaining Larry’s state of mind when he signed the 1996 directive, the fact is that it was the only directive Larry did sign.
As a nurse having worked with morphine, I have never heard of dosing morphine in a way that would accomplish the kind of unconscious state Larry was in for over a month, especially given Zombie’s description of his dosing. When Zombie says that Larry “was due for another morphine dose in a few hours, so the previous dose was probably starting to wear off” he reveals a basic mis-understanding of how morphine works and how it is dosed. I’ve never seen morphine put a patient in an unconscious state. Even pediatric patients on continuous morphine pumps don’t go into the kind of obtunded states where they rarely wake and cannot talk. Either Larry was on massive doses of morphine, not likely since it would have supressed his respiratory effort, or there is another explanation for his unconscious state, possibly the very conditions from which Larry suffered. Perhaps he was being given another medication of which Zombie was not aware. However, I personally do not believe that it was Larry’s morphine dosing that was keeping him so obtunded, especially given the fact that, apparently, he wasn’t being given the morphine consistently.
Also, morphine is a controlled substance. As such, only licensed professionals can administer morphine, and even they must have another professional witness the preparation and administration of the morphine. The idea that “orderlies” are administering morphine is not only illegal but nothing short of bizarre. Also, hospital staff signing off on morphine and then not giving it are not only falsifying medical records, which are legal records, but they are failing to account for the distribution of a controlled substance. Anyone doing such would be fired, no question about it. If a pattern of such were being followed, the facility would be quickly shut down. If the doctor or nurse were aware of such a pattern and withheld that information from the licensing board, then their actions were illegal and their licenses in jeopardy. I would not be willing to put my license at risk under such circumstances. Our license is our bread and butter. It’s how we feed our children. Something is going on here of which Zombie does not have a complete grasp.
It is certain that Larry was in pain. Orgain failure is painful. Cancer is painful. If he was being fed cream of wheat or applesauce only once a day, that is not near enough to meet the nutritional needs of anyone, much less someone in organ failure or suffering cancer, so Larry was starving and starvation is painful. The idea that the hospital staff were denying Larry the morphine because he didn’t look like he was in pain is another big red flag.
I’m not accusing Zombie of being disingenuous. Like many people, especially those under the incredible stress of watching a loved-one die, Zombie’s account suggest the many mis-understandings of non-medical people trying to understand the language and actions of the medical team. That Larry’s health care team left Zombie in the dark about so many things is irresponsible, but sadly too common. It’s also possible, as I’ve seen countless times, that the medical team attempted to explain their plan for Larry, and Zombie just didn’t understand or grasp what was going on. Pretty understandable considering the high stress position into which he was thrown.
Having said all of that, and while there are times when beginning water and food via enteral or parenteral means would be unnecessary (ie: the onset of death is truly imminent), a default policy that water and food are to be regarded as extraordinary care is immoral and antithetical to the healing professions. Larry himself said he didn’t want life-sustaining treatments, including nutrition and hydration, unless they were necessary for comfort. For someone who has several weeks of life to go, nutrition and hydration are necessary for comfort. Starving to death hurts.
Talk with your loved ones. Make sure people understand clearly your desires should a catastrophic event occur. The great majority of doctors and nurses are committed to helping people live well and, when the time comes, die well. Communication is the key. If the members of your health care team are failing to communicate, fire them, and find people who care and desire that you be a part of you or your loved-ones medical care.
I could not include a description every medical detail, considering the length of the essay; if I delineated every single aspect of his medical care that I observed, this essay would go on endlessly for pages and pages. What you see here is necessarily an abbreviated version of a month-long series of events.
But since you ask: No, I don’t know why Larry remained unconscious. But yes, he was often woken up (I don’t know how often or how many times per day, since I wasn’t there the whole time) to be fed by the orderlies, food which he accepted eagerly, though still semi-conscious.
As for the morphine: Yes, there were furious arguments between various levels of bureaucracy about locked cabinets, who has training or a license to administer it, why there wasn’t a nurse on hand at all times, who was responsible, and so on: Mostly, I just tuned that stuff out. Maybe I should have been paying more attention, but at the time I didn’t have the energy to cope with other people’s arguments.
Zombie, I appreciate that your account is by necessity abbreviated. But please understand from your readers’ perspective that we have only what you tell us. What you tell us is that the orderlies understood that Larry’s unconscious or semi-conscious state was caused by the morphine and that you took that understanding on face value. You tell us that the orderlies said that the doctors keep the patients unconscious on morphine so they cannot change their minds about the care they receive and that the attitude of the nurse in charge led you to agree with the orderlies. I understand how you would see it that way. What I’m telling you is that neither of the statements made by the orderlies is consistent with how morphine works or is dosed. What you describe about the hospice staff’s practice regarding the proper storage, dispensing and administration of morphine is troubling. The institution is not being well managed. Laws are being broken. While, I understand that you didn’t see that as your fight at the time, it may be that you’re in a position to help other patients by reporting your experience to the licensing board in that state or even to the feds. You describe an institution that should probably be shut down or at least drastically overhauled.
Based on what you tell us, my sense of it is that the doctor and the nurses carrying out the doctor’s orders interpreted Larry’s directive so broadly as to, effectively, starve him to death. Larry wrote in the directive that he didn’t want nutrition or hydration unless necessary for comfort. As I said in my original post, there are times when nutrition and hydration are genuinely useless and may even exacerbate the patient’s poor prognosis, but those times are generally limited to imminent death. It’s clear that Larry’s death wasn’t imminent and it’s also clear that starving is painful. They should have administered nutrition and hydration to your uncle, if only for his comfort. My condolences to you.
NEVER sign a “living will” or “advanced directive”!
Their function (if not their intent) is to take decision-making away from those who know the patient best, who love and care for his/her well-being. Instead, decisions will be made by lawyers; by “ethics professionals”; or by others who may be driven more by financial or ideological motives than by genuine care for a fellow human being.
Their is an alternative: The Will To Live. Find it here:
http://www.nrlc.org/MedEthics/WilltoLiveProject.html
Make copies and take them to the hospital when you go in, to the doctor’s for your file, in your car (just in case), etc.
And tell your friends and loved ones to get their own!
Thank you for sharing this story.
Two things stand out for me.
First, good for you for showing up, for caring, for paying attention, for thinking about right and wrong, for struggling to do the right thing, for being there for your uncle. Good for you. May you find peace in the knowledge that you did your best.
Second, each case is different and there are no simple rules we can follow to make these decisions easy. That really hurts, on a human level, and it makes things incredibly difficult on a legal level.
I have a friend who got very upset that his father was not allowed to die as he (his father) wished, and I have a friend who got very upset that his aunt was being allowed to die prematurely because her son didn’t care about her as much as my friend did.
My mom wanted very much to die with dignity, had a legal document drawn up to try to make sure that would happen, but legal documents don’t always help. When she needed emergency surgery, it did not seem right to let her just die in pain when the doctors were telling us they could save her–it wasn’t a DNR situation, exactly, it was a decision about whether to have medical treatment. My brother had to make a life-or-death decision during the emergency, and he chose life. My mom survived the surgery but they didn’t know whether she would be able to breathe on her own when they took out the breathing device. We were asked to decide in advance whether, if she didn’t breathe when they took the tube out, they should put it back in; we said no, since that seemed closer to her DNR wishes. She breathed. But her mind was never the same. They sent her to rehab but she wouldn’t do any of the rehab stuff–she didn’t understand that it might help her, she just thought we were being mean to her. So they kicked her out of rehab and into the nursing home she went. We found a home-based place instead of an institution–these places are very nice, they are licensed as nursing homes but they are someone’s actual home, so it smells like real food, for example. All of the homes like this in San Diego seem to be run by Filipinos, in an interesting link to your story. I will never forget when we were looking around at these places and one nice lady said “we treat them just as if they were our own parents.” I was so ashamed; we were hiring someone to treat our parent as if she were their parent. If I could do it over, I would stay in California (I live in Boston), take my mom home, and just stay there with her until she died, with hospice care at home. But we didn’t know she was dying! She did, but nobody believed her. Not us, not the doctors. (She didn’t say it, she just acted like it.) We thought she might live for a long time, so we were worried about having enough money to pay for her care, so we rented her house so we could pay for the facility where they would care for her. Had we known it was going to be within the year we would have used that money for home hospice, but we didn’t know. That’s the thing that makes everything so incredibly difficult. In the end she died of “failure to thrive,” in other words she stopped eating because there was nothing to live for. Everyone did their best to do everything right but it was still an epic fail.
My grandmother, on the other hand, who always said she hoped she would die before she lost her mind, lost her mind well before she died and spent about a decade as a veritable vegetable in a nursing home. I didn’t want to see her, but my sister-in-law convinced me to make the trip. It was horrifying to see my grandmother with no mental functioning at all. Not only did she not recognize me, she didn’t even seem to realize there were people around her. Her only sense that seemed intact was touch; when I handed her a rose she felt it with her fingers. So a few months later I took her a stuffed animal, but that sense was gone by then, she was just a shell with no input channel. She was babbling the whole time, like there was a tape playing in her head. It was so heartbreaking. I had a hard time emotionally because I wanted her to die so she would not suffer, but I didn’t want to want her to die.
I used to think I believed in euthanasia for people–I do believe in it for pets, but pets don’t know they have a future, which I think is a crucial distinction. My brother thought my grandmother should be helped to die, and when asked “but who will make the decision?” he said, “I will.” He was willing to do what he thought was right. But my grandmother’s body was strong, so it was not an option. Then when I saw my friend crying because his aunt was being killed in the hospital even though she only had pneumonia, I realized that it’s very simplistic to say that–sure, my brother has good judgment, but that doesn’t mean everyone does. It doesn’t solve the problem. At all.
So we are left with a combination of personal morality and incomplete legal solutions. It does seem to me that in the end reverence for life is the only moral principle that abides.
And one more thing we are left with: the tremendous need to tell our stories. That has always been the way humanity manages to deal with the human condition, and it always will.
Thank you for telling this story.
Compelling story that should hit home to all of us.
I also will put in a good word for Mere Citizen’s responses, especially since I often openly disagree with her. I think that I would trust her as my nurse were I cashing in my chips, as long as she did not bug too much about accepting Jesus…again. Of course, you never know; I just might.
The implications of all of this as it relates to healthcare, whether administered by the government or private providers is obviously of vital importance, but alas, it is not clear what the final judgement is, yet. I do think that DNR’s have to be honored.
For what it’s worth, here’s an obit from today’s Boston Globe of a woman who just stopped eating…at 96.
http://www.boston.com/bostonglobe/obituaries/articles/2011/02/24/dodie_captiva_96_free_spirit_modeled_her_life_after_emerson/
I’m so sorry for your loss, and I’m sorry you had to go through the mess with hospice. I don’t think people like that are evil, but I do think they suffer from a profound misunderstanding about human nature. They see suffering, and they want to end it. They don’t realize that sometimes, suffering is worth it. In their desire to spare their patient pain, they forget, or neglect, the things their patient will miss out on by checking out ahead of schedule.
My grandmother was diagnosed with COPD in 1992. They expected her to live about six months. She finally passed away in 2004. In the intervening years, there were many bouts with illness and numerous hospitalizations. Every time she went in, they told us it was the last time, she wouldn’t be recovering. The hospital staff would start talking about “quality of life” and offering their forms. I came to hate the doctors who pushed DNR forms on us. At one point, my mother exploded at one of them, just went off. “Don’t you understand? She doesn’t want to die yet!” They didn’t understand. My mamau wanted every minute God alloted her, whatever happened. And when she wouldn’t give them the DNR, they’d go behind her back and start working on mom, my uncle, and me. It was disgusting, disgraceful behavior. “She’s in so much pain, her body has to work so hard just to breathe.” Yes, so? She turned down your forms for a reason. When the emotional appeals didn’t work (Don’t you want to spare her this suffering?) they turned to the financial, telling us how we were just dragging out the inevitable and bleeding her estate dry. So what? It was her money. Why shouldn’t it be spent to keep her here with her people, like she wanted?
Each time, the staff suggested nursing homes or hospice care. Every time, we took her home and took care of her ourselves. We became experts on the subject of my grandmother’s health. While in hospital, she was given the wrong meds more than once, her breathing treatments were forgotten multiple times, she was ordered food she shouldn’t eat… if one of us didn’t stay with her every minute, we were terrified what medical oversight or error might happen next. (Once they gave her the wrong meds and lowered her blood pressure enough she nearly died. That was done in a 1 hr gap between when mom left and I got there.) We came to be distrustful of hospital care; it’s too easy for mistakes to be made. Half the time the nurses and the doctors didn’t talk to each other, they didn’t know what had been prescribed last, and what had been discontinued. Mom and I became the only people with a running narrative of the meds and the treatments, with a schedule of what she had taken and when. More than once, I’ve stopped a nurse from dispensing a medication in error. “No, right now her blood sugar is elevated due to this other medication, that one will raise it further, she can’t have it. Call Dr. Jones immediately.” I had mamau’s doctors home phone numbers, and I used them.
Mamau was in pain most of her last decade. Terrible pain. She also saw and spoke to people who loved her every single day. She fought to the end, to be part of our family for as long as she could. Because of that, my now-teenage sons have strong memories of their greatgrandmother. They knew her, loved her, were loved by her. That fact alone makes every penny spent, every moment suffered, worth it, for her, and for us.
If the workers in the hospice wnat to care for these people in a manner they’re comfortable with, then that’s the way it should be. Up until the feeding incident the narrative was a clear-cut case for Uncle Larry being allowed to die, but it turned ugly with the unseemly haste exhibited by the medical staff.
Excellent essay Zombie, very moving. Unfortunately, I will probably be facing my mother’s prolonged death soon, she has Alzheimer’s and is deteriorating quickly.
In the article, you mentioned that the hospice staff was staunchly Roman Catholic and that:
“they all had another attribute which was surprising, considering their profession working at what was essentially the waiting room for Death: They valued human life above all else.”
This should not be surprising. Christians have been doing this since the very beginning. The early Christians would remove the discarded babies of the Romans from the hillsides and adopt them as their own. Christian soldiers, after battle, would help any of those still alive on the battlefield, whether they were on their side or not. It is what we Christians are supposed to do….
I’m sorry both you and your uncle had to go through that. One thing I wanted to say – I can confirm that it’s very common for the panicky “will to live” to kick in when people are facing death.
I had a serious bout with cancer years ago. Facing a doctor who’s telling you you’re probably going to die is a sobering experience. Unless you’ve had that experience, I think it’s difficult to understand what it’s like. We all know we’re going to die but, when death comes nosing around, we’re almost always going to think it’s showing up way too early. You start realizing there are a lot things you’d still like to do. Not big, impressive “bucket list” things but things like see the springtime again or go for a hike in the hot summer sun.
The will to live is pretty strong in most people and, whether it’s realistic or not, they’re likely to start grasping at cures no matter what they may have said or thought when they were healthy.
I knew a doctor who was rather dismissive of a lot of treatment for advanced diseases and said she’d never get chemotherapy. However, when she got cancer, she went all in on chemo and everything else she could try. Unfortunately, she died anyway but not without a fight. Theory and reality – they’re different. It’s one thing to ponder death while dozing on the couch in good health. It’s another to have its hand around your neck.
By far the most interesting bit of writing I have read on the net in at least a year. Thank you for sharing.
Excellent essay, doing what an excellent essay should do, which is force us to explore the issue even deeper. My compliments and my most sincere condolences.
Zombie, peace be with you.
Ultimately, we all die. Twenty-five years ago, I signed the papers that your uncle “larry” signed. Whether he was in one of his depressed states or not, there is no way of knowing what “larry” meant by “help me”. Speed death up, or stop death, no telling if he had a change of heart and wanted to prolong containment within his body. I don’t recall the papers I signed directing for food and water to be withheld if I’m able to eat and drink; only if my body is incapable of eating/drinking without being tube fed while brain dead. We’ve been through hospitalizations and near death each now, and paying off medical bills is as hard as one imagines.
There is a point when each person faces their own mortality, death knocking. Having been victims of abusive nurses and surgeons ourselves, the mercy shown by his orderlies is the ideal and thoroughly commendable. I’m glad for “larry” that he was not alone in hospice, but had contact with you and at least one gentle spirited caregiver tending him as he faded away.
Personally, so far as my decision is concerned, I just don’t see the point of burdening my children or my spouse with insurmountable debt to prolong my own life briefly. Extending my life will not produce anything that we do not already enjoy. They already have my love, always have and always will. That love need not bankrupt them, as if prolonging this existence a bit more will alter the inevitable, death and separation from the body. It is foolish to ordain that we are bound to prove love for another by going against their wishes for their own good, particularly if extending my life ruins the lives of those I love. After all, regarding love, those who save their life, lose it; while those who give up their life, find it. Caritas.
I, too, just went through something very similar. My sister passed away, February a year ago, from a very deadly, fast moving brain cancer. She was in a “primier” Cancer treatment center ??). The hospital considered her competent when decisions made by my sister were in the hospital’s favor. At one point they tried to say my Mom wasn’t competent to make decisions. They wanted to take away my sister’s power of attorney from Mom. Fortunately her doctor stepped in and quickly settled the matter! I have since found out that there was quite a lot that could and should have been done for her.
All these “end time” decisions made in our younger years are distorted by the notion we have of never dying. Later many of us change our mind. It is very important we have a lawyer check over these forms we make up to cover all alternatives and protect our interests.
Personally, I feel it is a good idea to have a second, unbiased opinion, if there is such a thing in medicine! Like so many other things now days,integrity and duty, and the Hippocratic Oath don’t mean the same thing. Many doctors and facilities have shifted loyalties from care of patients over to those paying the doctor bill.
Personally I think insurance companies and unions have done so much good in our lives and have also become an albatross around our necks!
I am sorry for your loss. What you did was very hard and draining. your Uncle made a wise choice.
There is a phenomenon called Survivor Guilt, that I believe most normal people feel when someone else dies. Especially when we’re directly involved, it is common to feel that we should have done more, less, or something differently.
Z, it seems to me that you did a very great deal for your uncle, and that, had he been able, he would have said, “Thank you.”
My family went through a similar experience a month ago with my 85 year old dad. He was in his right mind and was able to walk and live in his own home with my mom until he contracted a nasty stomach bug in mid-January. Before he really recovered from that, he got a respiratory illness and was put on antibiotics. In a weakened state, he fell while trying to get to the bathroom and got a gash on his head. Because of that, his doctor recommended him going to the ER to get checked out. There he was diagnosed with double pneumonia and congestive heart failure.
Dad was admitted to the ICU and put on BiPAP and fluids. Over the course of 9 days it was a roller coaster with some small improvements but a general decline. His kidneys failed. His white count continued to climb. He was put on a ventilator to give his body a rest while his lungs tried to heal. The family (children and spouse) did agree to a DNR because we knew without a doubt that he would not want to be brought back if his heart stopped.
After 9 days, his organs wore out. He continued to receive fluids and breathing support to the end. We allowed the removal of the dialysis machine and the stopping of the vasopressors that had kept his blood pressure up. Within 15 minutes his heart stopped, and his soul left his shell of a body.
We were all in complete agreement, and my dad had made it clear that he never wanted to exist in a bed hooked up to equipment that continued an artificial life. His exit from this life was a beautiful and holy time.
I kept picturing him being called by friends and family already in heaven and being frustrated that we would continue to hold onto him here. Even though it is only human to question the decisions we made, to ask “what if…”, deep down I am confident that we honored his life and if anything, extended it for a week by allowing the ventilator.
He was simply too old and too sick to get well. These bodies are not meant to last forever.
Let me add that the ICU nurses and doctors were wonderful – respectful of Dad and our family and people of faith who prayed for and with us during those days.
How simple it would all be if every one of us could only get the care we could pay for. Out of money out of care. No ambiguity. No ones hand in my pocket via the caring professions. I bet even those hospice workers would moderate their charity once they are paying for it with lost wages: “You see Maria Larry had enough money for us to care for him for a week but you fed him so now he has lived past one week so we have no money to pay you.” No payroll check at the end of the week no care next week from lifesaving Maria. No Larry the week after. Simple.
Z, you were wonderful.
Please do not put on yourself guilt because you think that your uncle had changed his mind, he was as likely to have meant ‘ please help me die ‘, ‘please help me end this ‘.
Your uncle lived a brave life, if not a moral one as you say he was basicly a thief, and would, i believe, have faced the end of life the same way, bravely.
You were there for him, and, very happily, he had left firm and complete instructions as to how he wanted his ‘going’ to be handled.
Btw, do you think that a person with HIV forgets about the possibility of death, of imminent death, for so much as a day ? Of course not. Your uncle didn’t forget, ever, that he had left those firm instructions that you came to question.
He knew what he was doing, when he wrote the instructions, and when he didn’t change them, ever, through those many years, every day of which he was taking medication hoping to stave off aids.
He lived his life the way he wanted, and died the way he wanted.
Bless you for being there for him.
Chilling. Thank you for writing this…
Z, please don’t tear yourself up over what your uncle ‘might’ have meant. As others have said, he might just as easily have wanted help ending his suffering as prolonging his life.
I’m a Registered Nurse, and I work in hospice care. One thing I can tell you without question is that I’d *never* work at a ‘hospice’ like the one you described. The situation you describe is inexcusable, and possibly illegal. In any state I’m aware of, narcotics and other ‘schedule’ drugs have to be administered and controlled by a licensed nurse, not an unlicensed aide. If a patient is unable to swallow, they won’t be fed, since that can lead to aspiration pneumonia and other very severe problems. But a patient who can eat should be fed, even if just a little, and even if you have to feed them pudding or pureed food.
A DNR or Medical Power of Attorney isn’t a license for a facility to kill a patient, and whoever told you that they didn’t need your consent to make treatment decisions about your uncle was a liar. As the holder of your uncle’s MPA the right to determine his course of care is YOURS, not the doctors. YOU can demand that he be fed, YOU can decide for him to reduce or hold his morphine (or any other medication) and YOU had the right to move him to another hospice if you were that alarmed by what you were seeing where he was. And shame on the nurses who didn’t tell you that, because part of a nurse’s job is to be an advocate for his or her patients.
If you were telling them to do something, and the doctors and nurses were countermanding that, shame on them. And shame on you for letting them.
Had Larry been my uncle, he’d have been out of that place just as soon as I could find someplace else for him to be. You could even have seen about getting him cared for at home with around the clock caregivers. That might not have changed his outcome, but it might have been a more comforting environment for him to pass away in.
True hospice care is about giving a patient the greatest quality of life for however long they have to live. And there’s no excuse for a so-called ‘inpatient hospice’ to have no nurses present. I’m sorry your experience was so negative, please be assured, the vast majority of hospices in the country are run much better. The hospice nurses I’ve worked with are some of the most caring, compassionate, empathetic people I’ve ever known, and most have a personal faith that many a priest would envy. None of them would stay in the place you describe any longer than it would take to report it to the State.
I truly hope you can come to peace with what happened. Please consider grief counseling and/or talk with a clergyman if such would be a comfort. But do keep in mind that your uncle had that DNR order for 15 years, and never canceled it. Take comfort at least in knowing that that was his wish, and that you did the best you could given what you knew and what you were told.
And tell everyone in the town your uncle lived in to never be caught dead in that ‘hospice’.
Here at the dying end of this death thread about death channels, and the obvious implication to “death panels,” I have one small hope:
I hope those on the death panels are not on a “down” day when they review a case.
Awesome! This is the best thing I’ve heard about zombies for eva!
omg!!! this is scary!!!