Every hospital patient has a story. Just stop anyone on the street. Ask your relatives and friends. If they’ve done time in a hospital they’ll tell you about some indignity, perhaps a nightmare or two. If you haven’t heard these stories, it’s partly because you haven’t asked, or more likely, because most people want to forget about their hospital experiences if they can.
It is hard for me to write about such minor humiliations. Why? Because in terms of science and medicine, we are blessed to be alive in the American twenty-first century—and we know it.
In the past, amputations took place without anesthesia as did tooth extractions. Miracle medicines did not yet exist, doctors infected their patients because they did not wash their hands, the mentally ill were chained to the wall and left to live (or die) in their own filth. Women routinely died in childbirth and indeed, gave birth in great pain. Infant and child mortality rates were high and, if you broke a bone or fell, you were plumb out of luck.
Today, as our aging bodily infra-structures crumble, bionic parts are expertly inserted. If we fall and break our bones, we usually get to walk again.
And yet, this is not the whole story. There is also a mountain of sorrow that accompanies one’s medically successful stay in a large city hospital. No patient wants to seem ungrateful, self-indulgent, by complaining about the “small stuff”– except its not that small.
Patients in pain are further demoralized when they have to wait for four-six hours to take a hospital test or when they have to wait for 45 minutes after they press their call buttons. Patients who are in pain and perhaps experiencing side effects from their medication, grow more frightened when they never see the same nurse twice, and always have to fight for everything they need when they are at their weakest. No one likes being woken up at dawn and sleep-deprived when they most need their strength. Patients suffer a crisis of confidence when a nurse insists upon giving them the wrong medication–even when the patient begs them not to do so.
The national silence about this “small stuff” is amazing. And yet, someone must speak out. My recent experience at a first-rate Manhattan teaching hospital qualifies me.
Please understand: I was in a hospital whose physicians routinely make all the Best Doctor Lists. The Board is a-glitter and a-glow with a Who’s Who of philanthropy and culture. Celebrities, billionaires, and Arab Sheikhs routinely stay there. Thus, what happened was even more shocking.
The physicians and their techniques may be state-of-the-art but enter most hospitals and you will find yourself in a Third or Fourth World country. Pity the patient who does not have a few loving family members whose schedules allow them to spend every day and every night in the hospital. Pity the patient who cannot afford a private nurse or “companion.” Actually, even these safeguards are not always enough.
I chose this hospital for my hip replacement because four of my physicians, including the surgeon, were on staff there. They are superb professionals and they did not fail me. Indeed, they each visited me almost every day while I was hospitalized and my internist, a living saint, visited me at home (!) for months afterwards.
It doesn’t get better than this. So what am I talking about?
I am talking about the ”small stuff.” Let’s start with the nursing care. Florence Nightingale must be spinning in her grave. When you are sick enough to be in a hospital, one expects that nurses and aides will be compassionate and competent caretakers.
But the nursing staff and aides at this hospital never, ever came when you called for help–at least not for 30-45 minutes. While statistics confirm that there is a shortage of nurses—hence, the “outsourcing” of the profession, I personally observed nurses on this ward yukking it up together, snacking, talking on the phone, hiding from their patients in the bathroom, playing computer games, and, in effect, engaging in a permanent work slowdown.
In addition, both nurses and aides—including private duty nurses– did not always wash their patients in a timely or expert fashion, nor did they change the bed linen or clean the rooms in more than a slapdash manner. Aides and attendants banged trays of food down, often stormed in and out of rooms as if they were angry, and did not always make eye contact or ask how you were.
The ward nurses and aides rarely smiled and they never offered words of comfort. I never heard any ward nurse or aide say “I am sorry I could not come sooner” or “What can I do to help you?” or “I am sorry you are in so much pain.” The smallest etiquette would go a long way to calm and console those in need.
Imagine being as helpless and as dependent as an infant, unable to walk, or to walk without help. Imagine being too weak to answer the phone. Imagine being at their mercy of such people when you are in pain and immobilized in bed.
As an eighty-five year old friend of mine, who has also been a patient at this same hospital said: “They are missing something inside. They have no feelings.” A male relative, hospitalized in another state, said: “They (the staff) just don’t care anymore. They don’t give a goddam.” A friend from another borough said: “I went in for one problem but the hospital caused a second and even greater problem. They forced me to lie in a broken bed for five days. I told them that I had a bad back. No one listened. I ended up needing back surgery.”
In a hospital, absolutely everything is a struggle. Enormous vigilance and battle-ready stamina is required in order to protect and even save one’s own life there. For example, the patient must make sure that drugs to which she is allergic are not administered by accident. In a weakened state, this is often impossible. This inability to be a good advocate for oneself is, in and of itself, quite nerve-wracking.
In addition to non-compassionate behavior, some employees also seemed to be suffering from serious mental health problems. On my ward, certain staff members were exceptionally hostile, callously indifferent, or “emotionless,” and, in some instances, dangerous. Many ward employees seemed to resent being “bothered” by patient requests and sometimes responded with outright cruelty.
In addition, many of the foreign-born nurses and aides on my ward (who may be both competent and compassionate), spoke English in accents that were hard to understand and expressed emotion (or failed to do so) in ways that are foreign to Americans. This additional communication barrier is not helpful to a patient who is in pain and frightened.
Many of the nurses and aides whom I observed acted as if they hated their jobs and their patients. And the physicians, all of whom have stellar reputations, simply overlooked and tacitly accepted this sad state of affairs, as has the hospital administration and board.
Again, I must stress: I did not die. And yet: Despite my loving and supportive family and friends, and despite the fact that I have health insurance coverage and also hired private nurses or “companions,” here are some of the things that happened to me. Multiply them by every patient in a hospital and you will have some idea of the epidemic of “small stuff.”
Right after surgery, I came to in the recovery room and was introduced to my nurse. I tried to be friendly. She was from central Asia, probably from Iran. I was in terrible agony. The pain medication wasn’t working. I told her so. She said: “I have no time to be bothered by you.” And she turned her back and walked away. I tried to calm myself. And then I grimly, desperately, tried to steel myself against the pain.
She seemed to have only one other patient. I begged her to adjust the medication or to call the doctor. She did neither. She presided over what amounted to my torture for about two hours and then she sent me up to the ward without inserting an IV with pain medication and without sending an Rx for pain medication along with me. By now, I was beyond agony. Thankfully, as I trembled in pain, the ward nurses circled me. Finally, mercifully, a nurse started an IV and shot me full of dilaudid. These nurses were outraged by the Recovery Room nurse’s failure to keep me out of pain but I doubt that they “did” anything about it.
As I would learn from one of the staff physicians, this nurse had done things like this before and she’ll continue committing sadistic acts on the job until someone stops her.
The recovery room experience was my introduction to nursing care at this hospital.
Later that same night, I thought I was safe. I had a private room and a private nurse for the night. What could go wrong? I was high on dilaudid which, unfortunately, led me to engage in projectile vomiting. After one such bout, I asked my nurse, a rather meek woman from the Caribbean, for a wet washcloth for my hair and my eyes. She said, plaintively, in a slightly sing-song voice: “But what about me? You got it all over my blouse. I have to take care of my clothing first.”
She proceeded to clean her blouse while I waited for her to give me a damp washcloth.
Multiply these two incidents by everyone in the hospital and you will begin to get some idea of the “mountain of suffering” to which I refer.
Compared to the true horror stories, I was lucky. And yet, as one demoralizing incident after another happened to me, my spirit drooped and my resolve hardened: From now on, I will resist entering a hospital with all my might—and I will dread returning if I must.
There is no other way to convey the quality of one’s experience in a hospital other than by describing some of the comparatively minor things that happened –none of which felt minor at the time.
• I had a private night nurse from the Caribbean who absolutely refused to turn off the light because she was afraid of the dark. When I insisted, she went to sit in the bathroom with the light on and the door open. So, I asked her to close the bathroom door so that I might sleep. She refused to do so and thus compromised my sleeping. (Sure, I could diagnose her but what’s the point? I was at her mercy.)
• An American-born ward nurse or nursing aide, (I’m not sure who she was), made a big show of waking me up at midnight, (I had literally just fallen asleep), in order to take my vital signs. Then, a foreign-born ward nurse woke me up again at 2am to check my blood pressure again. There was truly no justification for any of this since my vital signs had been taken at least three times during the day and two hours previously–and I was not in Intensive Care.
• As they transported me to the Rehab ward, the foreign-born aide pushing my wheelchair allowed the elevator door to close on my good foot. It broke a toe. I howled in pain and fear. This man did not even say “I’m sorry.” No one thought this was particularly important.
• One of my private duty nurses, a well-dressed and well-spoken American-born woman, was ax-murderer crazy, I kid you not. She arrived while my son was visiting me and so I told her to relax outside, that I’d call her when I needed her. But when I asked her to come in (I was in pain), she was nowhere to be found. After 20 minutes, I sent my son out to find her. She was at the computer and said she “would come bye and bye.” Ten more minutes elapsed. When she finally came in, I asked her (in a mild voice) “Did you not hear the bell, did you not see the light?” Her eyes flared back in her head. She said: “That is beyond the pale! I do not have to take such mistreatment!” And she stormed out. She then stormed right back in and said: “I don’t think I have to talk to you anymore,” (a line she delivered in great anger) and she stormed right out again. Then, my phone rang. It was the hospital-based private nursing service who had sent her. “Is there something you want to tell us about your nurse?” “Why?” I cautiously asked. “Because she just called to say that you do not respect her.” I was terrified that I would have to face the night without a private nurse—and even more terrified to keep the one I had.
• Another private nurse, a really nice American-born women with whom I had bonded, slipped away at 7am without first loosening my leg compressors which, in effect, kept me trapped in my bed. I had specifically asked her to wake me up and to “free” me before she left. She was kind not cold; perhaps she was simply tired and not professionally “smart.” In and of itself, this is no big deal but once you know that the ward nurses will not respond to the call bell (and she and I had discussed this problem at length), her “forgetting” condemned me to a 45 minute wait before I could get anyone to free me so that I might go to the bathroom.
• An ambulette came to bring me home. The foreign-born driver who could barely speak English, brought a broken and unsafe wheelchair. He kept insisting that I had to get into it. I managed to borrow a good wheelchair from the ward. This man drove like a maniac, took the long route home, and played very loud Spanish music on his radio. Now, I happen to love Spanish music but I was strapped in and utterly dependent. I actually prayed to make it home safely.
Well, in the scheme of things–each incident is no big deal. Right? Wrong–because one experiences each frustration and indignity through a veil of tears and fear. Nothing is that “little,” everything feels overwhelming and even life-threatening.
Did such “little” things happen only to me? Absolutely not. For example, here’s what happened to other people on my ward when they pressed their red “call” bell. While there were some exceptions, mainly no one came for at least thirty-forty five minutes. And when they did, you often wish they hadn’t. The very nurse or aide who had been missing in action would arrive with full frontal attitude, in a state of anger and disgust. Some staff members displayed a dangerous, perhaps disassociated passivity.
For example, on my ward, a middle aged Italian-American female patient had suffered two brain aneurysms and a stroke during surgery. She had short term memory loss. She had to go to the bathroom and could not remember if she had or had not been instructed to leave her bed on her own. She pressed her button for 30 minutes. Her roommate, another woman with whom I had become friendly, was the chair of a department at a medical school. In sympathy, she also pressed her call button. Neither woman received any response. The poor soul could wait no longer and stumbled her way to the bathroom—but along the way she peed on herself. When the staff nurse (or aide) came in she was angry. She said: “Why are you bothering me?” Then, when she realized that she would have to clean up a “mess,” she exploded, humiliating the patient completely.
“Look,” the nurse (or aide) yelled, “I’m not coming back here again so if there is anything else you want you had better tell me now because that’s it for the night.” I was told that these lines were delivered in an angry and threatening voice.
Here’s another example from the same ward. It was a quiet weekend afternoon but the calm was pierced by piteous groans and cries that seemed to come from the next room. This went on for quite some time. Finally, I asked a visitor of mine to see whether we might be able to help whoever was crying out. The poor soul, a jovial and sophisticated African-American man, wanted some water. He had had a double hip replacement and could not get out of bed without assistance. My visitor gave him water. Later, at night, he was crying out again. When I asked one of the nurses, an American-born woman, to look in on him, she said: “That man always yells at night. Pay him no mind.” When I asked my private companion, also an American-born woman, to look in on him she said “I am here for you, not him. Pay attention to yourself; don’t get involved with anyone else’s problems.”
One or two such unkindnesses per hospital stay are bearable and easy to forget. Five a day are not. They lead to profound patient demoralization.
Also, let me be clear: As a patient, you are not necessarily facing death when you call for help and no one comes. The non-response might (only!) condemn you to continuing pain, perhaps to a worsening of certain conditions, perhaps to humiliation in terms of bathroom functions. However, a patient never knows when a life and death situation might be upon them. And, we know that, chances are, no one will respond. This fact causes endless worry and sorrow.
I have worked with physicians, nurses and other health care professionals since the early 1970s. Indeed, on the day my first book, Women and Madness was officially published in 1972, I was delivering a lecture to psychiatric nurses at a medical school. As a co-founder of the Association for Women in Psychology (1969) and the National Women’s Health Network (1975 – 1976), I found that nurses were usually more “compassionate” and knew more about each patient than most doctors did. Nurses, not doctors, were involved with patients daily, often all day; doctors briefly came and went. Nurses also advocated for their patients and sometimes stood up to young interns and residents whose knowledge of drugs, side effects, and patient allergies were less sophisticated than that of veteran nurses.
However, like teaching, nursing has increasingly been unable to attract highly committed, talented, and ambitious people. Nursing activism, which in the past was usually concerned with patient care, has increasingly, over time, become primarily concerned with nurses’ rights not to have mandatory overtime imposed, to guarantee pay and cost-of-living increases, and to limit nurse-to-patient ratios –because it is good for nurses, not necessarily for patients.
However, the nurses that I once knew and worked with in the 1970s and 1980s (this includes psychiatric nurses, nurse-midwives, physician assistants, and geriatric and hospice nurses), do not seem to be well represented on Manhattan hospital wards today.
My point: We must begin a national conversation about the demoralization of patients due to a general “compassion burnout” among hospital staff. I suspect that if staff were properly “sensitized,” that the number of illnesses and deaths that are caused by staff abuse and neglect will also decrease.
Hospital personnel are easy to criticize. Could I do the job of a nurse or a nurse’s aide? I doubt it. The work is as repetitive as housework, it is “dirty” work and no one really wants to do it, one’s job is never done, there are always new patients crying out for attention and help. And yet, the salary is reasonable for the education achieved and the work is neither isolating nor undignified. While everyone assures me that there is a serious shortage of nurses (hence, the outsourcing of the profession), I myself did not see nurses overworked. What I saw were civil servants on a permanent work slowdown.
The nurses and aides on my ward seemed to have no concept of what might comfort a patient. Or rather, they did not see “comforting” as part of their job description. Perhaps they all come from homes in which they themselves were never comforted as children, homes in which they may have routinely been seriously neglected and abused.
What can be done? The hospital administration could make a huge difference here. If they allocated resources to teach compassionate professionalism to all hospital employees—or at least teach them what to say and how to say it, (“I’m sorry I could not come sooner, how do you feel today, etc.?”), one’s stay in a hospital might be less traumatic. If the administration can offer diversity and “sensitivity” training, surely they can create a one-day training program to teach common decency, professional behavior, and what constitutes compassionate care giving. And surely, they can repeat the training every year.
Hospital administrations bear a primary responsibility for this unfortunate state of affairs. However, nurses and others hospital employees also bear responsibility. In the breach, people remain at each other’s mercy. How we, as individuals, treat each other is therefore more, not less, important.
Assuming we, the people, actually manage to pay for health insurance for every American–how in God’s name will we also manage to pay for a quality of care giving that is professional, and above all, compassionate?