Awake at the Bedside - Selections
Thought leaders in the field of contemplative caregiving offer resilience, wisdom, and freedom for those who keep watch at the bedside.
Transforming the Care of Serious Illness
Although the world is full of suffering, it is also full of the overcoming of it. —Helen Keller
Where do we want—where do we really want—the healthcare of death and dying to be? And how do we get there? To answer that question, we first need to look at how we arrived where we are today.
In a very short period of time, what for all of human history had been the central, shared, social experience—the inevitability and universality of death—disappeared from public view in the blink of an evolutionary eye. Here’s why: Around thirty thousand years ago, life expectancy was thirty. You could die in a storm. You could die of an infection. You could die because somebody killed you. Life was a dangerous thing.
It wasn’t until the development of agriculture, about ten thousand years ago, that things started to change. Soon after, people recognized that they got sick less often if they separated drinking water from sewage. In a relatively short time, the human race experienced a twenty-to thirty- year gain in life expectancy.
Right now in this country the median age of death is seventy-eight years. So we’ve seen very rapid, dramatic, almost incomprehensible evolutionary change in the last one hundred years.
All of a sudden, there’s no longer an expectation that death is normal or routine. In fact, death is the exception. Death itself should be defeated. Everyone thinks they deserve a long life, and that it’s normal to have a long life. This idea has essentially created a market for medical care, and we’ve seen exponential growth in hospitals, procedures, medicines, technology, health insurance to pay for all of it, and market forces that have both caused and been the result of this huge growth in an industry. If you look at the National Institutes of Health, which has billions of dollars of taxpayer money, you could be forgiven for thinking that its mission is to eliminate death at all costs—as if somehow that is a rational social goal. I’m not writing this to be funny. This is the society in which we live.
Some people, of course, saw this as maybe not an unalloyed good. Interestingly most of them were women—middle-aged women.
After World War II, Cicely Saunders was initially a social worker and then a nurse. When a pain expert in London told her that if she wanted to have any real power and authority she had to go to medical school, she did. So she was a social worker, nurse, physician, and also a very spiritual person—an interdisciplinary team in one person. In 1967 she established St. Christopher’s Hospice—the first modern hospice—almost entirely with charitable money.
She was also friends with Florence Wald, the dean of the Yale School of Nursing at the time. Cicely gave lectures at Yale, and Florence spent a sabbatical at St. Christopher’s in study and practice. Then Florence went back home and established the first hospice in the United States: the Connecticut Hospice.
Elisabeth Kübler-Ross was a psychiatrist at the University of Chicago who did a very revolutionary thing. Do you know what she’s remembered for? The least important thing she did: the five stages of grief. But the reason her book is so powerful is that all it is, is her listening to patients and families and quoting them. Asking them about their experience. You can’t find another book that is devoted entirely to the voices of patients like that one is. That’s what she should be remembered for; it was so revolutionary. Before this, the patient had all but disappeared. The patient was the object or the means for this marketplace to go on but was no longer at the center, and she put the patient back at the center. We owe her a huge debt of gratitude for that.
In one of my favorite quotes from Cicely Saunders—a masterpiece of understatement—she said, “Many of the patients feel deserted by their doctors at the end. Ideally the doctor should remain the center of a team who work together to relieve where they cannot heal, to keep the patient’s own struggle within his compass.” I love that. It’s the patient’s compass that we have to understand—to bring hope and consolation.
Kübler-Ross says, “I say to people who care for people who are dying, ‘If you really love that person and want to help them, be with them. Sit with them. You don’t have to talk. You don’t have to do anything. But really be there.’”
The result of all their work is that we got a federal benefit to pay for hospice. Previously, most of the hospices that grew in the United States were grassroots organizations led by volunteers from faith communities—church groups, synagogue groups. They were not part of the medical establishment in any way; they were countercultural. And they focused almost entirely on one disease: cancer—as if somehow that was what everybody died from. So the good news is that the federal benefit led to an exponential increase in access to hospice because now there was money to be made doing it; there was a way to support these programs. There are now over 5,500 hospices in the United States, 70 percent of which are for-profit. It’s a big industry and rapidly growing.
Hospice has many positive effects. It lets people stay home. It has a focus on the person—the patient as a person—and their family, not just the patient. This led to very substantial improvements in quality of life and ability to remain in control of your life during a serious illness. But the weaknesses are also quite profound.
By law and by design it’s only for people who have a prognosis of less than six months. Now those of you who have worked in healthcare will know that we have no idea who’s going to die in six months. Absolutely no idea. Even in the cancer wing we don’t know who’s going to die in six months. We don’t have a good sense of prognosis usually until a few weeks to maybe a month or two before death. So the design of the benefit bears no relationship to the reality of the human condition. That’s the first thing.
The second thing is that people have to sign a piece of paper giving up the right of insurance coverage for treatment of their disease in order to get the hospice care. So I’ve had many patients say to me that it feels like they’re being asked to sign their own death warrant. They’re being asked to sign a piece of paper that says, I agree I’m dying and you don’t have to take care of me in the hospital any more. And in return for confessing these sins I will get hospice care. It’s quite cruel, actually, in my view, what we ask patients to do.
So hospice doesn’t work for people who are not predictably and obviously dying. Alzheimer’s, stroke, heart failure, emphysema, endstage renal disease, transplant, frailty, debility: all of these are essentially inappropriate causes for hospice because we can’t predict their time of death. And when hospices, to their enormous credit, tried to extend palliative care to chronically ill populations who were not dying at a predictable rate, they got slammed for fraud and abuse by the federal government and have now become extremely sensitized to that risk and much less likely to take patients who are not clearly dying.
Hospice was a piece of the solution but not the entire solution.
In the late ’80s and early ’90s, a bunch of private-sector philanthropists like Robert Wood Johnson and George Soros came into the business. The first thing that Johnson did was back something called the Support Study, a huge study of over nine thousand patients with serious, chronic illness. About 40 percent of these patients had spent at least ten days in an ICU in their last hospital stay, half had moderate to severe pain half the time. Between 40 and 60 percent reported moderate to severe pain after a week in the hospital, when there had been plenty of time to evaluate and respond. And over half of families experienced a major adverse impact such as bankruptcy, loss of employment, serious illness in a spouse, etc.
I want to give a few examples of what Robert Wood Johnson did then. He paid for a physician curriculum called Epic, a nursing curriculum called Ellneck, and gave David Weissman money to develop a curriculum that is available on the internet, so anyone can take it and use it to teach. They tested a whole bunch of different models of delivery of palliative care in the Promoting Excellence in End-of-Life Care project, which was led by Ira Byock. They looked at textbooks and journals and found that you could read the whole major leading medical or nursing textbook and not know that any actual people died of any of these diseases. There was no written documentation of pain or suffering or distress. It just wasn’t in there—completely absent. So Robert Wood Johnson wrote to the editors and pointed out, for example, that the leading cause of death in this country is heart failure, but in the cardiology textbooks there is no death from heart failure. There is no shortness of breath, no fatigue, no depression, and no family/caregiver burden. And it changed. So now if you look at all those textbooks, they all have content in this area. And the same goes for journals. If you look at the leading journals now, they routinely carry publications on palliative care issues that were nowhere to be found ten years ago. That is really important; that is how students learn.
So that is how we got to where we are now. Thanks to these investments there are now over 1,700 hospital palliative care teams in the United States—that is the good news. The bad news is they are of highly variable quality, penetration, and impact. For instance, you can have a palliative care team if you have a full-time employee physician who only comes in after hours to do palliative care. In my view that shouldn’t count, but it counts. We need to bring everyone up to a higher standard. There are new subspecialties in medicine and nursing in the last five or six years, which are highly variable and offer highly inadequate exposure to training for medical students, nursing students, social work students, chaplaincy students, and graduate education. So you should not be surprised if your doctor or your nurse knows nothing about the management of pain and nothing about how to conduct a conversation about what to expect. They probably have never been trained to do so.
We’re also seeing a change in the cognitive frame for palliative care; it’s moving away from brink-of-death care and away from cancer as the model toward a recognition that palliative care is good quality care for anyone with a serious illness, whether they are going to be cured, live for twenty or thirty years, or have progressive illness. It is a much broader frame of reference for palliative care than we have ever seen before.
In this new frame for palliative care, the patient receives both care focused on quality of life and whatever disease-directed therapies are appropriate; you can get treatment for both pain and disease. This would apply to someone, say a twenty-three-year-old with acute leukemia, who’s going to go through hell with the diagnosis and treatment but is still going to be cured and then hopefully never see any of us again. The vast majority of patients we serve are chronically ill and living for a very long time with debilitating illnesses.
This new definition for palliative care is the one that I encourage and plead with you to use. It does not refer to prognosis. It does not say anything about dying. It doesn’t say anything about giving up one kind of treatment in order to get palliative treatment. Palliative care is appropriate at any age and any stage and can be provided at the same time as curative or life-prolonging treatment.
This definition was tested with a public audience—one thousand likely voters. The Center for Advancement of Palliative Care asked them to rank what they thought were the most valuable components of palliative care. This is what we learned.
The public liked the term “specialized medical care.” My nursing and social work colleagues don’t like that term, but the public liked it because it’s reassuring: “Oh, it’s like cardiology. Oh, it’s like oncology.”
For people with serious illnesses, interestingly, “advanced illness” equals “terminal” in the public’s eyes; they know that it’s a euphemism.
They didn’t like the term “suffering.” We use the term all the time, but it’s insider language. For the public and patients and families, the term “suffering” has a kind of death pull to it and an end-of-life pull to it, and if that’s not the way the patient or the family articulate what they’re going through, we should not impose that language on them. So we’re learning to use words like “symptoms,” “pain,” and “stress,” because everyone gets these.
Whatever the diagnosis, the goal is to improve quality of life for both the patient and the family. Interestingly, “patient” and “family” were the number-one identified characteristics of palliative care; they ranked higher than anything else in this definition.
Palliative care should be provided by a team. I had thought “team” would be negative; these people have enough strangers in and out of their rooms or in and out of their lives. But “team” seemed to imply “communication” to the public—that we were actually talking to each other, and they recognize that that’s important, so they liked it.
Then they really liked this: work with a patient’s other doctors. This is the opposite of what happens in hospice; you lose your whole team for a brand-new team at the time when you can least afford it. Instead, palliative care should be structured to provide an extra layer of support. If you’re looking for an elevator pitch about what palliative care should be, it’s the extra layer of support. If you’ve got three seconds, that’s it. Everybody understands that you need an added layer of support in this broken healthcare system. Palliative shouldn’t take anything away, and it shouldn’t ask people to give anything up.
We took this feedback from our poll and compiled it and then brought this definition of palliative care back to the public. We deliberately chose a Republican pollster, Bill Macinturf, because we wanted to make sure this data would feel legitimate to both sides of the aisle. Bill found that the response to the definition was so positive it was embarrassing; most of his colleagues thought he made the numbers up. A very positive result in public opinion polling is in the high 60 percent range. You don’t ever see public opinion in the 90 percent range. But whether you are a Tea Partier or a progressive, everybody wants palliative care when it’s defined this way.
The three goals of palliative care are the relief of physical, emotional, and spiritual distress. To accomplish this really well we need expert communication about what is happening and what to expect. We need skilled coordination across all the different settings that patients traverse in a serious illness.
We actually now have a growing body of evidence that supports what we’ve known in our hearts to be right; the scientific evidence shows that palliative care improves quality of life, prolongs life, and markedly reduces the risk of ending up in the hospital. There are very few other interventions in the healthcare system that you could say this about.
Recently, our colleagues at Massachusetts General did an important study on newly-diagnosed lung cancer patients. The control group was given excellent cancer care only. The intervention group got excellent cancer care plus palliative care. Those who got both had better quality of life and lower rates of depression, were much less likely to be hospitalized or receive chemotherapy in the last month of life, and to everyone’s surprise also lived on average 2.7 months longer.
This study hit the front page of all major media outlets. Not because of any of that other stuff, but because of those 2.7 months. My colleagues at Sinai called me and said, “Diane, did you see that paper? That can’t be true!” A large number of physicians seem to believe that with palliative care you might die better, but you will also die sooner. There is no data to support that myth, but it is the firmly held cognitive frame of doctors. When I show this data to regular people, they look at me like, “What’s the big deal? Of course people live longer if their quality of life is better.” There’s this huge disconnect between the profession and everyone else.
So what might be the mechanism of action for living longer with palliative care along with regular cancer care? What is the mechanism by which happiness might prolong life? We do know that depression is an independent predictor of mortality; if you have a stroke and are depressed, you will die sooner. If you have heart failure and are depressed, you will die sooner. If you have Alzheimer’s and are depressed, you will die sooner. Depression kills, and because there was a lot less depression in the palliative care group, they lived longer.
Okay, what about symptom control? Why would that help someone live longer? Pain also kills, and shortness of breath also kills. Perhaps they’re so stressful that all of your body’s energy and focus goes into bearing them, which takes away your resources from other things. It’s not clear, but that’s a second possibility. What else?
Personal human connection. What might be the mechanism of action of that? There is an increasing body of evidence suggesting that mood impacts the immune system. Some people still reject it as too “touchy feely,” but I showed this data at a talk at a medical school in Cincinnati, and for some reason there were scientists in the audience, which is unusual, and one of them stood up in the back and said, “There was a study of mice who had received transplants and were immune-system suppressed, and some mice were randomly assigned to have great care but be alone. They had clean cages but were in the cages by themselves. They had food when they were supposed to get food, but that was it. The other group was randomly assigned to a much more interesting environment where there were a lot more shavings and pieces of cloth and toys. There was also more handling and talking from the staff, and access to food and other mice. This group lived four times longer than the control group.” So basically the biggest impact on survival wasn’t made by the drugs; it was all the stuff that everyone in the real world understands is so critical to general well-being.
And finally, what do we know about being in the hospital if you are sick? It’s dangerous. It’s really dangerous. If you don’t absolutely have to be there, you should get out. And the reason is not that people there aren’t trying hard, not that they don’t care about you, not that they aren’t doing their best—it’s the risk of error, the risk of serious infection, the risk of falling in a strange place or becoming confused in a strange place, the risk of having your meds mixed up. There are over one hundred thousand deaths per year in this country that occur because someone was in the hospital. If you are a lung cancer patient and you are immune-suppressed with chemotherapy and radiation and you get a C. diff infection, you die. The risk to more vulnerable populations is even higher. So avoiding the hospital is actually among the most powerful explanations for this gain in life expectancy. This is really hard to get across to the public; people persist in believing the hospital is the one safe place. We have to figure out a way to change that cognitive frame among the public.
We live in a society in which the quality of medical care is among the poorest on the globe. We rank fortieth in quality of disease treatment among other nations, fortieth in infant and maternal mortality, fortieth in preventable mortality. As I said, there are one hundred thousand deaths per year in hospitals for preventable medical errors. One-seventh of our population is uninsured and has no access to healthcare, and healthcare is the number-one cause of bankruptcy in this country. In no other developed nation is that the case. Healthcare is the number-one cause of the decline in American society because we are spending almost one-fifth of our economy on it at this point.
Palliative care is central to the nation’s future because we take care of the sickest and most complex patients—who also happen to account for 50 percent of all healthcare spending. So we are sitting right at the center of the bull’s-eye. Our patient population is the most vulnerable to poor quality care and is the most expensive. Who do you think is going to get targeted in financial cuts? Our patient population. As it happens, we improve their quality of life while reducing their costs. So palliative care is the solution here. We have got to stop seeing ourselves as marginalized and unimportant and start seeing ourselves as the center of the future of the healthcare system.
Here’s an example. My colleague David Casserat had a patient, a seventy-nine-year-old woman, admitted through the emergency department for management of pain due to metastatic lung cancer. Her pain was eight out of ten, on admission of which she was taking Tylenol. She had been admitted four times within six months: twice for pain, once for nausea and dehydration, and once for altered mental status. Her eighty-seven-year-old husband was overwhelmed. She said, “I told the doctor that I never wanted to go back to the hospital. It’s torture. I have no control and can’t do anything for myself, and I get weaker and sicker. Every time I’m in the hospital, it feels like I will never get out.” And her husband: “She hates being in the hospital, but what could I do? The pain was terrible, and I couldn’t reach the oncologist.” This oncologist actually had “If this is an emergency, call 911” on the tape, so that is exactly what they did. “I couldn’t even move her myself, so I called the ambulance. It was the only thing I could do.” Now this patient eventually got into a home palliative care program where she lived another six months, continuing to get chemotherapy, and then got hospice through the last month of her life after that.
So these are the challenges for patients and families: no coordination, lack of support, no attention to goals or preferences, poor symptom management. But what about the healthcare systems in which they get care? Their care is very costly, they are frequently put in the most expensive setting, and they hate being there, like the woman in the example above.
Right now, thanks to healthcare reform, hospitals are actually being financially penalized for frequent readmissions and deaths. So all of a sudden, we have leverage because we can now help hospitals avoid those penalties by helping people stay safer at home.
It’s not enough to have access to palliative care in hospitals, which is where we’ve got it now. Most illness occurs at home and in communities. We need home palliative care regardless of prognosis or goals. It shouldn’t matter how long you’re going to live; it should matter what your need is. And so the next stage of development is to ensure access to palliative care across all settings, across all stages of illness, no matter where you live, no matter what color you are, no matter hold old you are.
We must increase public awareness of palliative care so people start demanding it. Demanding it of policy makers, demanding it of the providers. We have to educate patients, families, and providers. This is one of the goals of the New York Zen Center for Contemplative Care.
We also have to get to a point where healthcare professionals have the knowledge and skills to provide this kind of contemplative care.
Most of my colleagues do not know how to identify whether or not someone is dying. They send their patients to the ICU because they’re getting worse. They literally don’t recognize the dying process because they have not been taught to do so.
Why are things so bad? Medical students, residents, and fellows get virtually no exposure to good contemplative care practice or good palliative care practice during serious illness. “Ah, Mr. Bromley, nice to put a face on a disease.” That is how we are taught. We are taught to say, “It is the lung cancer patient in bed three.” It is more about the disease than it is about the person; that’s what you get when you are a patient.
We have to train more people in contemplative palliative care. We’ve got to make it easier for people in the middle of their career to be able to get contemplative training and enter the field. And we have to make sure that currently practicing doctors and nurses and those being trained all have core competencies in palliative care. We can’t depend on specialists to take care of this.
Palliative care has a procedure. Even though we don’t do colonoscopy or angioplasty or infused chemotherapy or operate on people, which is how you get paid in the healthcare profession, we have a critical procedure. I think everybody who is engaged in contemplative approaches to care understands just how hard it is. It is rocket science. It is brain surgery. It’s hard, and it takes training. It takes training and practice and that is what everyone in the medical field needs to get.
I have a question I ask a lot, once I’ve gotten to know a patient or family: “How are you feeling inside yourself?” I keep a journal of the responses. One of my patients was a woman who was the center of her church and the center of her extended family, and she had breast cancer that was so advanced when she came in, because she hated doctors and hated hospitals, that there was very little we could do medically to prolong her life. But this is what she said in answer to that question: “I am talking to God. I don’t think I can take this pain anymore. I am so worried about my family. I wish I could get away from all this. I am not sure how my husband will manage without me. I want to go home. I am at peace.” I have never had somebody say to me, “I want to be cured.” I have never had somebody say to me, “I am terrified of dying.” When you are where the person is, you can be present with them in that place. But you have to ask the right question. If your question is “How is your pain on a scale of zero to ten?” then you will only get a number.
There is not only patient suffering; there is—very importantly—professional suffering. I want to tell you about Judy Friedman, who was a patient of mine a few years ago. She was sixty-five years old, diagnosed with cancer at age fifty-nine, no smoking history, initially given a prognosis of about a year, lived six years partly because she was just lucky, partly because she had a great oncologist whom she was devoted to and adored. I met her about two years before she would die. She found me on the internet and came to see me because she recognized that her oncologist was unable to talk to her about what might happen if the treatment stopped working, and she was somebody who wanted to know. She wanted control. So her oncologist and I comanaged her for the last two years of her life, and I worked on things like fatigue, pain and talking to her daughter and her husband. When her disease started progressing in spite of everything that the oncologist had tried, she went to hospice for only three weeks and died very peacefully at home.
When Judy’s brain metastases were progressing, she had headaches and difficulty concentrating. Her oncologist offered her the placement of a reservoir in her brain to give what’s called intrathecal chemotherapy directly into the metastatic lesions of the brain. Judy came to see me, and the conversation we had was the most profound learning experience of my career—and maybe my entire life so far. She said, “Dr. C said I should have intrathecal chemotherapy. What do you think?” I am old enough by now to suppress the urge to say, “That’s absolutely ridiculous! What is he talking about?” Instead I said, “You know, Judy, I don’t know. This is not my area of expertise, but I’ll call him and we’ll talk about it and one of us will get back to you.” So I called him and I said, “You know, Dr. C, Judy was in to see me today. She said that you had recommended intrathecal chemotherapy. I don’t have much experience with this procedure. What are you hoping we can accomplish for her?” Doing my best to be completely without judgment and open, right? He said, “It won’t help her.” So I had to swallow my own opinions and my own cause—with self-awareness, self-knowledge, I can know that what I am feeling is not always what I should act on. There was a long pause, and so I did the Judo thing. I reversed my impulse and said, “Do you want me to encourage her to go ahead with it?” And here is what he said: “I don’t want Judy to think I am abandoning her.”
Do you see why this was such a profound moment for me? It completely shifted my perspective on why sometimes my colleagues do things that make absolutely no sense to me at all. This doctor loved Judy, was totally devoted to her, had performed magic in order to keep her going for a really long time. He had no more oncology treatments to offer her and no other means of expressing his love for her. So he offered her a futile treatment because it was the only arrow in his quiver. So as soon as he said that—and this is the power of self-awareness and naming feelings—as soon as he said, “I don’t want Judy to think I am abandoning her,” he then immediately followed with “We are not going to do that.” Right away. Because he wasn’t conscious of his behavior until I asked the question, and he answered it.
Practice asking the right question. Being there. Ask questions instead of telling people what to do.
After that, Judy was home on hospice. On one of my visits there I asked how she was feeling inside herself, and she said, “I am really angry at Dr. C. He has not called, and he has not come to see me.” And it is so interesting that her whole inner-life was trying to understand this experience of betrayal by this doctor whom she was devoted to and adored. It was not being spent on her parents, her husband, her daughter, or her book group. It was about her doctor, her feeling of betrayal by the doctor. “Why isn’t he coming to see me, why hasn’t he called?” After a conversation, she agreed to let me call him. “You know, Dr. C,” I said. “Judy really wants to see you.” And he said, “Why? I can’t help her.” He still felt that the only thing he had to offer was cancer treatment. I said, “Actually she wants to thank you and she wants to say goodbye. She really loves you.” He went and made his first home visit. After he saw her, she was a different person—much more peaceful and more able to be present. Education is critical for all of us.
All hospitals, nursing homes, home care agencies, and doctors’ offices should have the capacity to deliver this kind of care, and the model should be that we have hospice services inpatient units, outpatient clinics, cancer center palliative care, outpatient primary care clinics, nursing home service, and home care. This is the vision: Wherever you go, there is palliative care. You shouldn’t have to be in the hospital or be in hospice—palliative care can be just part of what you get when you have a serious illness. Isaac Eisenoff said, “Life is pleasant, death is peaceful. It’s the transition that is troublesome.” That’s what we are here for. I love these words from William Gibson: “The future is here now, it is just not evenly distributed.” So that is why our work is so important, so that care becomes evenly distributed. Contemplative care is the embodiment, ethos, and practice of palliative care. It is palliative care. And those of us who are not Buddhist monks are borrowing from the wisdom traditions to practice the work that we do with patients. Contemplative care is a coming home. Thank you, reader, for your work and efforts on behalf of all of us.