Teaching Doctors the ‘End of Life Conversation’
Once, when I was still only a medical student, I was told by an attending physician to go and tell the relatives of a patient, who had cancer of the lung, that he was dying. Unhappily for me, the man’s nearest relative, his wife, was almost totally deaf, and so before long I found myself bellowing the news at the top of my voice for the whole hospital to hear. I remember thinking that this was not the way things should be done.
But what is the way things should be done? An essay in the New England Journal of Medicine for May 3, titled “Freedom from the Tyranny of Choice – Teaching the End-of-Life Conversation,” points out that doctors are still largely at a loss about what to do when a patient’s death is close but he could be kept alive a little longer with active  and intrusive treatment. Should they present the patient, or the patient’s relatives, with a kind of multiple choice list and let him or them decide among the various options? “Do you want to be resuscitated?” is an embarrassing question to have to ask anyone; doctors often get round it by asking people auxiliary questions such as “Do you want further lab tests?” or “If we turn off the insulin drip, is it all right if we don’t check the blood sugar?”
The essay suggests that the conditions of modern medical practice are not conducive to proper end-of-life conversations, as it delicately calls them. The physician who knows the patient best, and whom the patient trusts most, is often — usually — not available; thanks to increasingly stringent regulations concerning their working hours, residents rarely get to know patients intimately enough to engage in such conversations. And so, in the end, everything is done in an atmosphere of hurry and embarrassment, if it is done at all. In one survey of 2500 patients with metastatic cancer, only 20 percent had any clear plan or instructions as to what to do when the end was near.
The authors of the essay write: “Although we learn guidelines for using antibiotics and managing acute coronary syndrome, in our experience, we do not learn similar guidelines for end-of-life conversations.” I confess that at this point I began to smile, if a little wanly. I knew that a checklist was coming, and so it was: the “step-by-step SPIKES approach.” SPIKES stands for “setting up, perception, invitation, knowledge, emotions, strategy and summary.” The authors add: “They are not widely used.” I am not surprised.
for every human problem [there is] an equal and opposite checklist to solve it.
Indeed, and the reason is often to share responsibility and avoid drawing an arbitrary line. Would you rather be in the position of saying patient X is too dumb to live and/or drain resources/time needed elsewhere because (a) he wants to vote for Obama or (b) he can’t find Canada on the map?
Thankfully I’m not a doctor, though FWIW as an outsider who’s been down this road with family and friends, there’s probably no substitute for a conversation with a competent family doctor who relays his conclusions to the attending physician. I can clearly recall the expression of relief on one doctor’s face when I said ‘No heroic measures here, she’s too far gone.’
When that isn’t possible, isn’t it best to rely on the checklist?
Good shot, Theodore. I’m one of those patients, but fortunately gifted with knowledge of sciences, mathematics and logic. I’ve gone to more than a dozen specialists with the specific request that they share their knowledge and experience with me in the form of symptomatic “milestones” I should look for in my glidepath to death, their probabilities and the range of reasonable palliative treatments for each — reasonable in the sense of preserving quality of life while not leaving my family destitute. And finally I sought advice on terminal care.
Fortunately I live outside the USA, so I can independently use as many types of doctors and labs as I wish without restrictions of government, guilds and insurance fraudsters. Therefore, and because of my scientific background, I had gathered on my own more clinical trend data than any of the doctors I consulted could get, including a high-falutin’, super expensive center in the U.S.
‎I got referred to a “Pain Institute” that none of them actually knew where it was or who ran it.
All agreed surgery and chemo/radio were high risk dead ends, but “what the hey, try it if you want!”
In short, any one of the doctors I’ve consulted would have been fired by any young Pakistani project engineer, had the doctors been engineers and the subject been a bridge instead of my body.
The Hemlock Society is your best bet — never a doctor!
PS: reflect that the priesthoods of doctors and engineers share the same attribute: they PRACTICE, an “ART” they say; they don’t work, they take no responsibility, and they’re not accountable as are all other trades.
Most would say there’s a difference between a physician, an engineer and a plumber. Aren’t you looking for certainty where there is none? Many of us can navigate without the Hemlock Society, though if it helps you, by all means go for it.
I’ve appreciated reading your intelligent commentary in these pages pelaut.
In end of life straits, I would only rely upon a physician with whom I’d had a long term relationship and had developed a sense of trust.
These days, such relationships are few and far between.
You appear to have the experiences to write a comprehensive book on the quality of life. Albeit, many will shun it.
I base my physicians qualifications on his outlook and his attempt at maintaining his and his own families quality of life.
That quality of life is unique to the individual, and is passed on to his closest family members.
Professing and practicing are two completely different aspects. But, one knowledgeable in quality of life issues does make educated decisions.
Give us MD’s a break Pelaut. Medicine is not physics or math or chemistry. We can only base decisions on probabilities and range of experience. Most doctors don’t have the fortitude to tell you to seek death when you’re at that door.
And when it gets to that point, what difference does a week make, in the scheme of things. We can keep things going for a long time, you know…..
Virtuous “professionals” don’t pretend to know what they don’t know, nor do they shy from telling you they don’t know what can be known. The priesthood of government monopolized medicine hides behind the holy-of-holies veil, and when someone peeks behind it they resort to “it’s difficult”, “it’s an art”, etc., etc. Passing strange that I’ve never had a veterinarian tell me that, but actually, my body is no more complex than my pets’.
As for the word “physician”. I am my physician. Doctors are my consultants. If I want a priest, I go to church. I tell that to a doctor on every first visit as I also hand him a printed prĂ©cis of my complete medical history. When they balk at such a relationship, I walk out without paying.
A dear friend of mine was an exception. A real doctor, a GP, he recently died from matastacized melanoma. Before passing he complained to me that he couldn’t get any of his colleagues to treat him at the end. They scurried behind the veil. He had to do what he got trained not to do: self-treat. Friends, family and his knowledge of drugs led him comfortably home, not the credentialed priests of hypocrisies.
That lack of “fortitude”, as you call it, is abhorrent. Reality is that none of us will get out of this life alive, but through practicing over and over and over, the white-coated priests of the AMA do have the means with which to help others reach the end-point of their lifetime in a sane and comfortable way. The idea and accompanying attitude that just because modern medicine can keep a body alive almost indefinitely somehow makes doctors “god” must go. For doctors shall return to dust in the same manner as those they call their patients (though today “patience” would be more appropros since the fear of death and fear of lawsuits has created a hamster wheel of epic proportions for those with serious illness) and a little more compassion for what is the shared human experience is often truly the better medicine.
One of the problems with gov’t legislated methodologies for how to handle end of life issues is the not insignificant risk of having the process devolve into ways that save money by giving the dying a bum’s rush into the next world.
You have to really trust your doctors AND your gov’t. given the current structure of medcine and knowledge of where the obamabots want to take us, who could be comfortable with that?
Be informed, and make a detailed living will, and make your loved ones swear to follow it- regrardles of the pressure they may feel exerted upon them at some point in the future by a system that prefers you die and stop costing thme resources.
Look at the UK, and be very afraid.
I would not be so negative about doctors. As my mother went through the process of passing away, I found the doctor in charge compassionate and helpful. I think part of the problem today is that people are so used to criticizing everything and everybody that they end up not being able to trust anybody. A doctor–like any other person–can discern whether or not the relatives of a patient are willing to trust his judgment and he will respond in kind, as a human being who understands and will have the virtues that are required to respond to the trust you have placed in him.
In the end, all we have as human beings is the trust we can place in one another, even if we have not known one another before. There is a sense in which you really only show your true self in critical situations, as opposed to mundane everyday life, and whether you can trust others or not emerges in a time when you are faced with a loved one dying. (I’m not ignoring the relevance and importance of religious faith–my comment here pertains only to the human relationships discussed in the article.)
Dr. Dalrymple,
(I feel like I’ve just said “Dr Doolittle” — no offense!) I’m generally one who agrees with your points. My problem here is that I’m not entirely sure what your point is — I hasten to add that I’m not attempting to criticize your writing(!) — I simply remain ignorant of whether you have a strong opinion on this subject and if so, what that is.
I would guess, from having read you for years, that you’d definitely be against any “death panel” or “algorithmic method of determination” as to whether someone pursues every last medical procedure in attempting to prolong their life.
The extreme cases are easy: if I have a bacterial infection which could kill me untreated (I did once, in my mid 20′s) — I’m now 47 — then obviously it’s “not asking too much” to be given the proper anti-biotic to prolong my own life by say another 40+ years — by which I mean the “easy” cases could be determined algorithmically: that if a $5 drug buys 50 years, it is always worth giving (a dollar-per-decade is a bargain). (OK, to whom? to me of course, but also perhaps to society, assuming that is, that I’m not a mass-murderer). On the other hand, if / when cancer has exploded into a hundred different places in a person’s body, then perhaps no treatment can realistically prolong a life by even months.
I’m just trying to talk “out loud” — so that you, or perhaps others can tell me if I’m interpreting you correctly.
My confusion comes in part from how, on the one hand you look askance at being forced to inform a patient’s family of his impending death (and also how you don’t want a clipboard/algorithmic conversation), on the other hand you say, as a patient, you didn’t want to be disturbed in your suffering by “choices.”
I’m genuinely confused as to how much discussion, and from who, you would advocate.
What would you say is “a good way” — if there is such a thing as a good way — of discussing / making decisions regarding one’s impending death? Is it the “traditional” way — where, ideally a patient has a strong relationship with a primary care doctor, and said doctor is able to spend sufficient time with the patient in order to have, perhaps, multiple conversations regarding quote-end-quote “choices?”
I can say relate one such “embarrassing conversation” that my Mother’s, z”l, “uber-duper-doctor” had with her during her last stay in his super-special ward in a teaching hospital. She was more or less trying to broach this topic with him — should she consider anything else (medical procedures) or should she just go home to die? She wasn’t anywhere near that blunt since she was damned scared — she didn’t know really how long she had to live (and neither did we!) — and perhaps that was her salient question.
She gave him a nice chance / an opening by saying “I’m prepared to continue fighting as long as you are.” I thought this was well stated (I was standing 10 feet away in the hallway). And this is when he became acutely embarrassed and began to stammer and ultimately never answered her… just “umm’ed” until she finally figured out that which he could not even bring himself to say, namely: “It’s probably past the point of doing anything more which will prolong your life” — which, had he said this would have been great(!) But he didn’t. He couldn’t do it, I thought, out of weakness. And my Mother, z”l, had to figure this out the hard way. I saw her crestfallen face and felt so bad that he hadn’t treated her with more respect — especially given her rather brave question. She was learning of her own impending death (as was I) by a doctor’s inability to form a coherent sentence. (sigh).
Perhaps your only point is that it should not be like the above(?) If so, then I would wholeheartedly agree.
– FF
first re: hard of hearing patients. put your stethoscope in their ears and speak into the bell. about half the time this will work, the other half will appreciate the attempt.
second re: end of life discussion. get the relatives out of the room and have the discussion with the patient if the patient is responsive. a very high percentage of the time you will find that what the elderly patient wants is different from what the family wants.
These things really are not that complicated.
People, Americans in particular, fetishize choice. They require an endless array of choices, even though, in real life, all choices are binary: Yes/no. Up/down. In/out. Left/right. It is the path you follow with each choice made which offers up new ones, but they are all binary. Every single one.
My wife is a hospice nurse. My first wife died, over several years, of breast cancer. I just recently got a new kidney. I am no stranger to the medical profession.
Dealing with this topic is a specialty. You don’t go to an orthopedist for gout, you go to a rheumatologist. I have heard orthopedists say the stupidest things to gout patients, like they just came from the court of Henry VIII! They might know what it looks like, but they hardly understand the process. That never seems to stop them from giving advice on the subject. After all they’re Doctors! And the patient continues to suffer.
My wife says her job is primarily to sell Death to the families of the patients. The patient usually knows by the time she sees them, if only because they feel so bad, but the families are usually in total denial. Few say that their Doctor even told them what “hospice” is. I have even found some Doctors, although less and less frequently, who don’t really understand it, either.
But, in her hands, she slowly and patiently goes over her sales pitch, often repeating things many times, until they begin to understand. When you see her in action, she really is remarkable! But it’s what she does. Every day. She’s a true professional.
I think it’s unfair to expect doctors, who fight so hard for our lives, to not be upset when they lose to the Grim Reaper. It is an admission of defeat, with all the attendent guilt and humiliation, not to mention losing what had probably become, from long association, a dear friend. I have only ever seen the greatest of doctors who handle this stuff well, and they tell me it is exhausting.
I can imagine. After all, it’s not their specialty. Saving lives is. I don’t think I’d want a doctor who doesn’t want to save my life, and would just callously end it, would you?
Still, the end comes, and many people, especially not-too-intelligent ones, can’t get their minds around it. Perhaps there needs to be a specialist in counseling the wisdom of not torturing your Grandpa right up until the moment of death. That’s how my wife puts it. And she’s right.
After all, she’s the one who gave me my new kidney.
My Dear Pelaut,
Get with hospice earlier, rather than later. You cannot se them too early. It is not really so much a place to die, as a place to live without suffering, if possible (and it usually is). I waited far too long with my first wife, because she was so young and initially wanted to fight. Knowing what I do now, I would have talked her into stopping treatment the day I signed the DNR.
When my quite ancient mother was suffering from all her myriad treatments, they gave her a few more days. My wife told me to call in hospice. They took over her care, and she lived for another 18 months! In comfort. Again, it’s just what they do.
Good luck.
I’ll be honest, and say that your comment is one of the creepiest ones I’ve read. I understand your point, but the glibness about death is pretty bizarre-sounding. Selling people on Death is not a phrase likely to get you invited back to parties – sounds very Kevorkian.
Now,I personally sympathize with the doctors here. A doctor is fundamentally about fixing the human body. Even a psychiatrist is more focused on fixing the biological basis for the psychiatric disorder. This is a case of having to give up, throw up your hands, and be unable to do anything. It’s already frustrating, and a failure. Also, this involves death, which is always unpleasant to talk about. It’s about philosophy and ethics, not about anything involving technical knowledge. How do you tell someone that they are going to end?
Thanks, John J, for your thoughtful comments and personal experience. Not at all creepy. Very valuable.
I have no fear of death, only of pain and de-humanization before it. That’s why it is patently incompetent for a doctor to not give one a roadmap in the process, as guess-ridden as it may be, to assist one in “getting affairs in order” as they say. Hospice is a grand idea. I just can’t get any of the “professionals” to suggest one, let alone give me the milestones in the process which will enable us to know when it’s time to check into one.
And yes, a plumber knows his business better than many docs know theirs.
There were a couple articles “Why Doctors Die Differently” and “Dying Doctors Make Wiser Last Choices” that have amplified my reflections on this issue. My considerations of decisions related to dying have been further advanced with the introductions of sterile “Hospitalists,” State legislation requiring hospitals with 50 beds or more to implement a palliative care program based on Government developed materials, the Britains “NICE” programs and Donald
Berwick’s philosophies and the IPAB.
There is the religious perspective … that it is one’s Deity’s decision as to when to call you home.
There is the individual’s perspective that they want to fight on to their last breath, as after all, the fight just might be won.
There is the individual who DOESN’T KNOW whether the outlook is in fact hopeless and the ramifications.
There is the individual who is led to recognize the cost of their fight for life is against the interests “of the greater good,” ie the costs of your continued existence do not warrant your survival… please recognize it is time for us to facilitate your death and go quietly.
For those in the first two categories, I would suggest they need to plan ahead to have the moneys and insurance that will permit their purchase of the effort involved.
For those who would further the last option … I find the option repulsive!
As for the patient that doesn’t know – On the other hand, I would appreciate the point “Frumious Falafel” makes and in keeping with why Doctor’s die differently/Make wiser last choices. The patient needs know or to have someone they trust clearly advise them of the reality of elevated expenditures on “futile ‘lifesaving’ care,” and passing away with less control or comfort than if they forewent aggressive treatment.
As one with parents who suffered severe strokes, who spent 8 and 10 years respectively, at best – tied in a wheel chair shouting “Lord, Lord why can’t I die” and at worst with an intellect clearly imprisoned in a vocally silenced, blind, deaf and immobile body … I would highly value the ability to elect the level of support I would receive for survival.
I have discussed this with my personal physician. I am comfortable he would see that my desires are respected. As a former HHS Government Employee I can assure you I don’t need or want a Government dictated/Hospitalist or Government Directed Hospital Counselor urging me to die for “the greater good.”
Of course it might be helpful to provide course work/exposure beginning at the high school level and in places of worship on the realities of traumatic and chronic, particularly worsening, of impairments. For many, information on the nature and outcomes of rehabilitation efforts, may be worth covering. The extent of the impacts of nursing home, home care on both costs and quality of the lives involved should be related. I personally found the realities of being tied in a wheelchair in ones own excretions, grouped around a TV set and waiting to see who would be next to die, pretty grim (understatement).
I would suggest trusted physician’s should if necessary receive training in Medical School or continuing education courses and take the responsibility of providing perspectives for “more active and better decisions about what care we/their patients will/do and will or do not want at the end of our lives.” This would be a responsible part of their contributions as physicians. In the end (if not preferably before, with a “Living Will” type document) it needs to be the province of the individual to decide the extent of efforts as their lives are winding down.
This thread and comments are generally well written and non-confrontative, a refreshing occurrence here on PJM.
JGwen: “there is the religious perspective…….” Couple years ago in the Denver area, a prominent hospital was taken over by a Catholic hospital chain. The new executives never clearly answered a question voiced numerous times as to the Catholic chain respecting end-of-life legal documents such as living wills. “Pulling the plug” is against Catholic dogma as far as I know.
But that choice is needed hard though it may be. It’s their life and their choice to let it end or not.
Life is full of hard choices. No one claimed it’s easy.
Right on, Carn.
I’ve known several people that have passed on with circumstances strangely similar to a scenario they had described earlier in life.
Hey, this death thing is getting personal.
Do you expect me to believe that everyone dies?
Things are going just fine for me, and I plan to stick around forever.
Peddle your nostrums elsewhere.
…Hmm, what is this lump on my neck?
I went through this last year with my wife, who died of Shy-Drager in December. Her neurologist had told us in 2008 what the typical life span was once a person was diagnosed with Shy-Drager.
In the opinion of someone who has been through it, that checklist is too complicated.
The patient just needs a simple explanation, like this:
‘At some time over the next year [or whatever time frame is appropriate] you may stop breathing, or your heart may stop, or you may slip into a coma. If that happens you will be unaware of what is going on and you will simply pass away peacefully in your sleep. If you don’t want that, we can try to resuscitate you and bring you back so you are awake and aware again, and you may live a few days or weeks or months longer. This is your choice, so it is something you need to think about, and for our records we need to know: Do you want us to let you pass away in your sleep, or try resuscitate you?’
My wife was afraid of death, but she knew the consequences of her choice, and a year before she died she requested “Do Not Resuscitate.’
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