navigating the medical terrain
The final word of warning brings us back, full circle, to the doctors—the doctors who, in their valiant effort to maintain life, often distort death. The caution offered here, however, is not about the doctors per se, but rather our views and expectations of them.
Most of us follow our doctors somewhat blindly. We trust them. We feel safe around them. We become a little meek and obsequious in their presence. When serious illness strikes and we are feeling vulnerable and frightened, our doctors become almost godlike. They enter the room and we don’t want them to leave. Their mere presence makes us feel better. We put them in charge. We let them, directly or indirectly, guide not only our care, but our perceptions, hopes, and responses. We do it because we don’t know what else to do. And we do it because they have training, experience, contacts, and tools—perhaps lifesaving tools—that we don’t.
But if we are going to change the way we die, we need to rethink this attitude, or at least be keenly attuned to it. For as much as we might trust and respect our doctors, we also need to recognize that they have limits and biases, and that death is not their friend. We need to ask direct questions, be willing to disagree with them, and get second opinions. We need, ultimately, to accept responsibility for our own care and the care of our loved ones.
an imperfect profession
Obviously there are many doctors who handle the end of life beautifully, doctors who can look into the eyes of a dying person and share his pain, doctors who can sit patiently with a troubled family and assuage their grief, doctors who take end-of-life care as seriously as they take life-saving care. I have met some of these men and women. I watched as one listened calmly and compassionately to a family who refused to accept a terminal diagnosis, and then, over the course of a week, ever so gently helped them to come to terms with what was happening. One sat at a bedside for several hours holding a young patient’s hand until he died. One taught frightened family members how to speak to and gently massage a loved one who was dying. These are the true miracle workers, who understand the science of medicine, the art of communication, and the intricacies of the human soul.
All too often, however, doctors fail dying patients and their families. As our guides along this final path, they often lead us in a direction we never intended to go, or desert us just when we need them most. Studies show that doctors often delay or avoid breaking bad news; they use euphemisms and jargon when speaking with gravely ill patients; they minimize the severity of an illness and give patients undue hope; they knowingly overtreat patients who are terminally ill; and they spend dramatically less time with patients once those patients are known to be “dying.”
We cannot make informed decisions if we don’t have proper information. We cannot forgo senseless treatments, seek hospice care, or achieve any sort of a peaceful death if we do not know that the treatments are senseless, that hospice is an option, or that death is approaching. We cannot be anything but afraid and anxious if our doctors desert us in the final hour.
Ben Holden, as you may recall from “A Portrait of Death,” was lying in his hospital bed when his doctor walked in, said that Ben had “a real bad booger” in his esophagus and not much time left, and then walked out. One woman told me that she didn’t hear anything at all from her doctor after cancer spread into her spine and hip; after eight months of treating her with experimental drugs, he simply contacted her primary physician and said, “You can take care of her now.”
Even doctors who are praised by their colleagues for their ability to deal with dying patients sometimes use questionable tactics. I caught up with one such doctor as he was emerging from the room of a patient who was close to death. She was having trouble breathing, a frightening symptom. He had just asked her whether she wanted to be put on a ventilator. When I asked what other option he offered her, he replied gravely, “She knows the other option.”
I doubt that she did. She was suffering and he had suggested a way to relieve that suffering. His words—or his lack of words—implied that her other option was to suffocate until she died. He did not tell her that the ventilator would mean not only that she couldn’t eat, talk, or cough, but that she would have to be fed and hydrated mechanically, and that she would have to have secretions suctioned out of her lungs regularly. He did not explain to her that there were other ways to ease her discomfort—sedatives, painkillers, oxygen, bronchodilators, fluid reduction, and, if anyone had the time, human contact and tenderness. He did not tell her that once her anxiety passed, she might go on breathing on her own for some time. He did not tell her that, in the end, death was the only option, but that there were several ways to get there.
Doctors often tiptoe around the subject of death, talking instead about long-term survival rates, remission, and effective treatments. They talk about patients who have “expired” and diseases that are “not compatible with life.” (I have actually heard that expression used more than once.) They blame patients for not wanting to talk about death when often it is the doctor who is avoiding the subject. And all too frequently they refer to life-sustaining and other invasive treatments as “comfort care,” treating patients “palliatively” with intravenous fluids, feeding tubes, antibiotics, and ventilators. One doctor, standing next to a human pincushion in an ICU, said to me, “I told the family that we can unhook him and let him die, or we can continue to keep him comfortable.” This is comfort?
It’s not that doctors are unfeeling. They don’t walk past the doors of their dying patients or speak in techno-tongue or pursue futile treatments because they are malicious. I am not even convinced that they do it because they want to make an extra buck or because they want to avoid lawsuits, as some people argue. Most doctors are simply responding to an incredibly difficult situation in the best way they know how.
“Part of what you’re supposed to do is help people die as well as they can. That’s part of the job,” says Dr. Elizabeth Beautyman (the internist at Roosevelt Hospital in New York). “But it is extremely difficult to walk into a patient’s room in the hospital, a patient who is dying, but is not dead yet. There is no treatment. You’re just waiting for them to die and they’re waiting to die. You walk in and say, ‘How are things today, Mr. Jones?’ It’s very difficult…. You aren’t sure what they want from you, and you don’t know what to give them.”
Doctors are only human. They are dealing with their own fears of death, and their own ignorance about end-of-life care. They are responding to cues from individual patients and their families, and they are also responding to strong pressures from society to treat, to save, to do more. The way doctors deal with patients and families reflects years of training, established medical routines, growing fiscal pressures, and a system that values invasive, life-sustaining treatments over time-consuming palliative care and counseling.
the training process
Young, eager college graduates enter medical school with good intentions and compassionate hearts. They want to help people. They want to alleviate suffering. They want to combat disease. But during those first two years of school, medical students are so inundated by technical details, biological minutiae, and pages of facts that rote memorization and getting through each exam becomes their only concern. The patient is reduced to a set of hormones, genes, blood cells, and a list of mechanical failures. He is no longer a person, but a “host,” an environment within which diseases reside and troubles occur. Students are taught how to fix faulty valves, fight bacterial invaders, remove damaged tissue, jump-start faltering hearts, and close wounds. The patient as a car; the hospital as a body shop; the doctor as a mechanic. Little time in medical school is spent discussing the patient as a person, much less the patient’s needs, fears, comfort, or quality of life. Even less time is spent talking about how to help patients die.
A recent survey showed that only 6 of the 126 medical schools in the United States have a separate, required course on end-of-life care; the other 120 include the subject as part of some other course. (In Canada, all 16 medical schools require students to study palliative care, but the entire subject is usually covered in less than 11 hours.) The subject is sneaking, ever so slowly, into the course load, but still, it is given in dribs and drabs. It is not incorporated into the heart of medical education. It is not treated as if it were a routine and valued part of medicine. It is handled as something separate and unusual. Those courses that exist are not part of the core curriculum and, in many cases, are taught not by doctors, but by nurses, social workers, medical ethicists, and chaplains.
“We have faculty who teach classes, who tell them this is important,” says Dr. Robert Levine, professor of medicine at the Yale University School of Medicine. “But what we don’t have is a solid body of role models who don’t just say it’s important, but do it as if it were important.”
When students finally pull their noses out of their books and begin to deal with human subjects, usually in the third year of medical school, they spend their time with patients who are receiving treatment and are expected to recover, not patients who are dying. Dr. R. Sean Morrison, a geriatrician at Mount Sinai Medical Center in New York, recalls: “In four years of medical school, I saw one person die and that was unexpected, on the operating table. The doctor walked out, spent two minutes with the man’s friend who had brought him in, and left.”
A survey of medical students in the United States found that while all third-year medical students had cared for at least one patient who was dying, 41 percent had never heard a doctor talking with a dying patient, 35 percent had never discussed care for dying patients with a senior doctor, and half the students couldn’t remember anything in their course curriculum that dealt with end-of-life care.
Not only do students receive inadequate training on how to talk to and care for terminally ill patients, but during those early years most of them learn to distance themselves from these patients. They become a bit callous, not because they are evil but because they are human. Medical students work long, exhausting days and nights under enormous pressures, and they witness extraordinary pain—hourly. They are surrounded by patients who are oozing, defecating, moaning, and decaying. They see people’s bodies splayed open, ripped apart, and withering away. And they see families crushed by unimaginable anxiety and grief. It is difficult and frightening, and so the students steel themselves and separate themselves, the young and healthy, from the sick.
Quite simply, allowing yourself to care about someone who is likely to die, hurts. “There’s a fine line between getting to know a patient and staying back so you don’t break down when something happens,” explained a student who took a seminar at Yale’s School of Medicine on caring for dying patients. “It’s putting yourself through an emotional wringer,” another student said. “You’re going to become friends with somebody who’s going to die.”
Yes, and they are going to do it over and over again. So to survive, they try not to become too close or to care too much. They turn from the hurt, and focus their energy on physical healing.
After medical school, students begin their “residency,” which is on-the-job training. They choose a medical specialty, and then often a subspecialty, learning about cancer, for example, and then cancer of the blood and then treatments for a specific type of leukemia. As they zero in on a field of medicine and then a specific disease, organ, or mode of treatment, they move further away from any sort of holistic approach. They know about laparoscopy or radiation or transplantation. They learn what’s new and what’s hot. They become human microscopes, focusing in on the minute and, in the process, sometimes losing sight of the whole.
My young son has a wonderful book called Zoom, in which each picture offers a broader view than the one before; the reader sees dots on a rooster’s head, the rooster on a farm, the farm as a child’s toy, the child and her toy as a picture in a magazine, and so on and so on, backing up in this way until the reader is looking at a dot which is Earth. Young doctors do just the opposite, zooming in, from humanity to a patient to an illness to an organ to a cell to a protein; zooming in, closer and closer, until there is no humanity, and no patient anymore. There is only a disease, a treatment, and a response.
down the halls of medicine
Whatever they have learned, or have not learned, in medical school, whatever protective armors or tunnel-vision they might have developed, once established in the medical system most doctors become fairly adept at walking the line between getting personally involved with patients and staying back so that they can get through the day. We can doctor-bash all we want, but the truth is that doctors want to help. They want to make things better. And they hurt when their patients are dying. Few doctors go into medicine purely for money or prestige. They care about their patients, even when those patients are known to be dying.
But it is this very determination to take care of patients and make things better that gets in the way of helping patients who are dying. Doctors want to fix things and save lives; that is why they go to medical school, that is what they are trained to do, and that is what they are rewarded for. They know that, in theory, every ailment is fixable, if only they could find the right tools. With a stronger drug or a newer treatment or a better procedure they should be able to decimate the cancer, manipulate the heart, assist the lungs, prevent the infection, repair the damage. It all makes sense. So they push forward, trying to solve the puzzle that illness presents, and to fend off, for as long as possible, the ultimate enemy—Death.
Many doctors are also driven by an inescapable belief that they can beat the odds because, tucked into the back of their minds, is an indelible memory of a patient who survived, or a patient for whom life beyond the edge was worthwhile. “They may have seen a 90-year-old man resuscitated successfully so that he could move back home for another six months or year of life,” said Dr. Kenneth Prager from New York Presbyterian Hospital. “They may have seen someone put on a ventilator and then [removed from it and] sent home, debilitated and needing constant oxygen—perhaps in a state most of us couldn’t bear—and observed him having meaningful time with children and grandchildren, and heard him say a thousand thank-yous for ‘saving my life.’ That memory can become a vivid image in a moment of crisis when someone is unable to breathe. The rest of us can say, especially after the person dies a horrible death, that this death was inescapable and the action unjustified, inhumane even. But for that doctor, it was not done to harm someone. It was done because there was a chance. An infinitesimally small chance maybe, but a chance.”
When doctors know that they cannot make a patient better, many of them feel as if they have failed. No matter what the intellect might know—that this is not their fault—an inner voice haunts them: Did I do all that I could have done? Was there something I should have done differently? Thoughts of the patient, the life that was lost, haunt them. Thoughts of the family, who will be heartbroken, haunt them. Thoughts of their own training and career haunt them. The dying patient becomes a disturbing reflection not only of medicine’s limits, but of the doctor’s personal failings.
“A doctor is often torn by the feeling, ‘I did the wrong thing, I gave the wrong drug, I shouldn’t have done this operation, or maybe if I had somehow done it a little more meticulously there wouldn’t have been this infection,’” says Dr. Sherwin Nuland, author of How We Die. “On some level, it’s always my fault. On some level, I always let the family down, always let the patient down…. Doctors are a self-selected group,” he continued, “and one of the characteristics we select for is obsessional thinking, compulsive behavior, a terrible sense of obligation, and punishing superegos. We blame ourselves for everything.”
Other doctors say they don’t feel that they have failed as much as they feel horribly helpless when a patient is dying. In the face of death, when the drugs and machines won’t make someone better, when all that technical training is useless, they don’t know what to do. They don’t know how to help. They don’t know what to say.
Of course, under all this fierce ambition and desire to help is a very human response to death. Doctors arrive at a bedside with their own fears of death, unresolved grief, and uncertainty about how to respond to someone else’s loss. They are not sure how to bring up the subject or relay the facts. They get upset when a patient cries hysterically or falls silently into despair. They are uncomfortable with death just like the rest of us are.
Dr. Elisabeth Kübler-Ross, who has taught leagues of young doctors about death and dying, also found this to be true. “Those physicians who were most afraid of the issue of death and dying never revealed the truth to their patients, rationalizing that the patients were not willing to talk about it,” she wrote in her book To Live Until We Say Good-Bye. “These professionals were not able to see the projection of their own fears, their hidden anxiety, yet the patients were able to pick up these feelings and, therefore, never shared their own knowledge with their physicians. This situation left many dying in a vacuum, unattended and lonely.”
pressures from outside
In addition to the narrowness of medical education and the passions and fears of individual doctors, are the pressures, rewards, and deeply integrated routines of the workplace that have an enormous influence on how doctors care for patients who they know are going to die.
An unwavering drive to battle disease and prolong life is applauded and encouraged by hospital administrators and co-workers—and by society. The guy who pulls a patient through, who uses an innovative treatment, who is part of a leading research team, who is adept at using the newest technology, is a hero. He or she is published, given tenure, interviewed by the media, embraced by the patient and family, and revered by colleagues. When doctors get together to review cases, they discuss the patients who survived, the treatments that worked, the mistakes that were made; the question of whether or not a patient lived fully at the end or found a “good death” is not mentioned.
Dr. Howard Spiro, editor of the book Facing Death, says that death “rarely makes it to grand rounds: our mortality conferences review why someone has died and what errors may have been made, but we never wonder aloud whether it could have been the right time for that patient to die.”
In medical circles, palliative care is neither well understood, nor highly respected. Although pain and symptom management has become a technically complex field, it is still widely considered to be “soft” medicine—medicine for sissies. In the United States, such specialized care is not even offered in many hospitals, and in those hospitals where palliative care programs do exist, doctors often don’t understand what the units do and are reluctant to refer patients to them.
Tacked onto this are the same issues that guide and distort many professions today: lawsuits, rapidly advancing technology, and financial pressures.
It is unclear how much doctors are influenced by a fear of lawsuits when caring for terminally ill patients. Certainly, tests are ordered and procedures done, at least in part, to protect doctors from legal trouble. And random interviews suggest that many doctors still do not understand the laws regarding end-of-life care. Even though judges and medical societies have repeatedly upheld a patient’s, and a legal surrogate’s, right to refuse medical treatment, including life-sustaining treatment, doctors routinely question whether or not they can withdraw or withhold such treatment.
As for technology and medical innovation, it has not only complicated the decisions and allowed us to stretch out the final months and days of life, but it has also put us in the hands of strangers just when we need a familiar face. By the time people are seriously ill, they are often distanced from their family doctors, who know not only their medical histories, but something of their personal histories. Instead, they are seeing a specialist—an oncologist, neurologist, hematologist, cardiologist, pulmonologist—or a team of specialists, who don’t have a relationship with the patient or family and may not know the patient’s wishes and priorities. Furthermore, patients are sometimes seeing these specialists and subspecialists and medical teams at a tertiary-care hospital—a cancer center, a heart and blood institute, a neurological clinic—which is several hours away from their home, family, and friends.
Finally, fiscal pressures have become an enormous intrusion. In this era of managed care, doctors who might like to spend a little time with a patient, who might like to develop some sort of relationship and understanding, are hard-pressed to do so. Instead, they are pressured to see a certain number of patients within a certain amount of time. A visit typically lasts about ten minutes, often less, which is barely enough time to say hello and how’s your heart, much less talk about a person’s wishes at the end of life, their personal goals, or their feelings about comfort care and counseling.
reexamining our expectations
Clearly, doctors need to learn how to relay bad news, and how to handle patients’ responses of anger, despair, or denial. They need to learn how to initiate discussions about end-of-life care and to discuss all the options. They need to acknowledge the limits of medicine, understand the shifting nature of hope, and become more familiar with the laws and legal decisions regarding the rejection or refusal of treatment. And they definitely need to learn more about palliative care and witness all that it is possible to do at the end of life.
But we also have to be realistic. How much change can we expect from our doctors? And, quite honestly, how much change do we want?
Doctors will always be focused, first and foremost, on fighting illness and on saving lives. They are doctors, not therapists. They are trained, quite rigorously, to battle disease and extend life. That goal is drummed into their hearts and minds from the moment they take their first course in anatomy, and they carry it with them throughout their medical careers. They believe they can find the tools to beat a disease, they can make a patient better. This is what drives them each day, it is who they are, and, quite frankly, it is who we want them to be.
The truth is, an unwavering, obsessive drive to extend life and defeat death is not such a bad trait in a doctor. In fact, that’s just the kind of doctor we look for when we’re diagnosed with a serious illness. We want a doctor who has enormous technical skill and is fanatic about fighting disease, one who will stay at work until all hours and lie awake nights figuring out how to solve the puzzle. We want a doctor who will save us.
The problem arises when we expect this same doctor, the one we sought out because he or she was so intent on finding a cure, to forget about blood cell counts and drug regimens, and talk instead about meaning at the end of life. It happens on television—a doctor blasts into the emergency room and saves the day, then spends long hours befriending and consoling patients and families. A doctor fights aggressively and then tempers that quest at exactly the right moment to become comforter, confidante, and sensitive counselor. On television, doctors understand human emotions as well as they understand antimetabolites and neutrophils. Some real-life doctors are like this. But most are not. It’s a tall order, after all.
While we should push for better training of doctors, we also have to reexamine our own expectations, especially in light of the pressures that are brought to bear. At a time when lawmakers and corporations are trying to rein in escalating medical costs, we want doctors to spend more time listening to and counseling patients and their families. At a time when doctors have to be masters of physiology and pharmacology and advanced technology, we want them to serve as psychologist and pastor as well. At a time when one disease requires consultation with a number of specialists, and doctors often see patients for the first time when they are already in critical condition, we think they should develop a trusting and intimate relationship with patient and family.
Doctors should learn about palliative care. They should be able to talk about death with their patients. But we have to accept the limits of what they can be, and recognize the almost contradictory expectations we have of them. One minute we are pleading, “Do something,” and the next minute we are asking, “Why didn’t you stop sooner?” Medicine is filled with unknowns and uncertainties, and clouded further by fluctuating and profound emotions. Doctors need training in end-of-life care, but they cannot be all that we want them to be. And they cannot, by themselves, change the way we die.
This returns us to where we began: We have to accept some responsibility in creating kinder deaths for ourselves and our loved ones. Some of us may find the perfect doctor, but most of us will have to work with a doctor who will not speak openly and at length about death and who is not well-versed in palliative care. Most of us will have to work within the parameters of a medical system that is aimed at fighting illness and beating death.
What can we do? We can seek out a doctor who suits our needs, a doctor whom we trust and respect, and with whom we can speak openly. Then we can talk with that doctor about our views and preferences concerning end-of-life care, and make sure that he or she understands how important this issue is to us. We can have legal documents in place and be sure that our doctor not only knows about the documents but understands the intent behind them.
And then, when illness strikes, we need to initiate discussions and ask hard questions: Where might this illness lead? What options will I have? What sorts of crises might arise? What will the end be like? How can we ease that process? We have to give the doctor permission to be honest, and then push if he or she dodges our overtures. This is extremely important to me. I need to talk with you about this. When it comes to personal attention and care, we need to respect the demands on our doctors, but we also need to let them know what it is we want from them.
Finally, we have to appreciate our own role in shaping this passage. That role is not limited to asking questions and making sure a patient’s treatment preferences are respected. We also have to open ourselves to the experience, the whole experience, taking part in it fully, so that the final act of life is not only merciful, but loving.