MARIAM’S HEADSCARVES WERE GORGEOUS. The fabrics were colorful and threaded through with gold. A resident in our medicine program, she’d come to this country several years earlier after completing medical school in her native Pakistan. Over the previous two years, I had grown close to her and always enjoyed having her on my service. She was smart, diligent, and dependable. Her patient that day was dying, had been for the previous several weeks. What had started out as zealous, pedal-to-the-metal medical care had become a vehicle to prolong the patient’s death. And now, more organs were beginning to shut down—today, the patient’s kidneys. And yet her family had remained indelibly optimistic despite all of our bad news, broken hesitantly at first and then with increasing bluntness. They believed in miracles, they said, and expected us to keep working full speed ahead until God pulled one out of his hat.
The typical next step for kidney failure is to start hemodialysis, a process in which the patient’s blood is cleaned by a machine, in place of the damaged kidneys, several times a week. In order to accomplish this, the patient’s blood supply must be accessed by catheters large enough to pass the entire body’s blood volume over the course of a few hours. Placement of these catheters is risky, especially for critically ill patients, and painful.
But I pointed out to the team that in this patient’s case, dialysis would not impact the underlying disease that was rapidly shutting down her organs. As we discussed it, we agreed that the procedure would not help the patient in any significant way, even though it might temporarily improve her lab values—something that every doctor has been trained to achieve. But in the final analysis, dialysis would only add risk and suffering. Yet given what we knew about the family, we were concerned they would insist on dialysis anyway.
We began to strategize an approach. I suggested that we not bring it up and simply explain that her kidneys had now begun to shut down. If they asked about dialysis, we would stress that it would not be of medical benefit and point out the less risky but less effective treatments we were already using to address the kidney failure. Then I turned to Mariam, the resident primarily in charge of the patient, and asked her how she would approach the family.
She bowed her head with a smile and then looked up. “You really want to hear what I think?”
I nodded. Of course I did.
“No offense, but you Americans make me laugh. We’ve spent a half hour trying to figure out a way to avoid doing something that it makes no sense to do. In Pakistan, if we don’t think that something will help a patient, we wouldn’t even consider offering it. And they would never ask for it either. They would trust our judgment.”
It was so obvious, and a little embarrassing. But I also felt a spike of pride. I love being from a culture that believes in autonomy, even if we sometimes approach it the wrong way. Since my conversation with Mariam, I’ve surveyed many residents and colleagues from other countries, and what I’ve learned is that our approach is far from universal; indeed, it’s distinctly American. Our zeal for unimpeded medical access trumps even that of other industrialized countries. In a recent study of seven wealthy, industrialized nations, it was found that in 2010, over 40 percent of Americans dying from cancer were admitted to the ICU in the last six months of life. That figure was more than double any of the other six countries studied. And on average, American patients dying of cancer had twice as many ICU days as similar patients from the other countries studied.
The way we practice medicine now is an historical aberration. Until the mid-twentieth century, doctors took control of all medical decisions for their patients, a form of medical paternalism. There was an implicit acceptance that they were best equipped by their training and superior knowledge to chart the most appropriate course of action for their patients. Questions weren’t usually asked and instructions were carefully heeded by patients.
And physicians upheld their responsibility in this covenantal relationship by refusing to abandon their patients. The 1903 version of the American Medical Association’s Code of Medical Ethics states:
The medical attendant ought not to abandon a patient because deemed incurable; for, continued attention may be highly useful to the sufferer, and comforting to the relatives, even in the last period of the fatal malady, by alleviating pain and by soothing mental anguish. (Section 7)
Doctors sat at bedsides with sick patients late into the night. They visited them in their homes, ate meals that their families prepared, and provided a calm and steady presence. They knew their patients well and usually cared for them over large spans of their lives. They tended to be generalists, able to deliver babies, treat illnesses, and minister to the dying. They were not focused, as physicians tend to be today, on only one organ system and its physiology; rather, they cared for the whole patient and his family.
Norman Rockwell captures the American version of this doctor in many of his iconic renderings. Rockwell published 323 original covers for the Saturday Evening Post, which today credits his magazine covers with mirroring “cherished American ideals and values.” Almost all of the doctors are graying men in their sixties, and they appear sage, patient, and attentive. They sit with children and worried families, hearing their concerns, comforting them by doing all of the doctorly things done in those days: taking a pulse, looking at a thermometer, caring for a little girl’s rag doll.
While some view his work as kitschy or bourgeois, his portraits struck a chord for many Americans. Although I’m somewhat embarrassed to admit it, I too am comforted by that nostalgic version of medical culture. When I think of whom I want at my bedside when I’m sick, it is someone with those qualities—someone who knows me well and will sit with me as long as I need, with a watchful, concerned eye.
But that image of the American doctor underwent a drastic makeover beginning in the 1960s. As hair got longer and skirts got shorter, the demographic of the American doctor changed dramatically. While only 9 percent of students entering medical school in 1965 were women, by 1975, that number was over 20 percent; today, it approaches 50 percent.
Physicians and their patients, once demographically matched, were becoming more foreign to each other. No longer were black patients restricted from receiving care in most white hospitals. Jewish doctors were being granted increased access to mainstream hospitals. Doctors might now look different from their patients, speak different languages, and have different cultural norms in terms of illness, treatment, and communication.
Not only were the players themselves changing, but the power dynamic was too. The women’s movement, the quest for civil rights, and the antiwar movement all valued equality and the decentralization of power. And this spirit penetrated the paternalistic world of medicine, fueled by revelations of abuse of power. Nazi doctors, who conducted brutally sadistic acts on mostly Jewish prisoners in the name of research, became a symbol of the potential evils of unfettered and unregulated medicine. And in 1972, the world learned about the egregious experiments at Tuskegee University, a research study conducted by the U.S. Public Health Service spanning forty years. White medical doctors had experimented on syphilis-infected black patients without their knowledge or consent, dispassionately observing them as they deteriorated, and eventually died, from their infections—again, all in the name of medical research. The study would likely have gone on longer had it not been shut down after a leak to the press.
These profound violations of the authority granted physicians for millennia were met with shock and horror and a collective commitment to never again tolerate these violations of personal autonomy. Even the more benign paternalism practiced by old-time doctors no longer sat right. How could such physicians be so sure that an eighty-six-year-old patient with breast cancer wouldn’t want to hear the C-word? And thus the traditional power relationship between patient and physician, in which doctors held all of the cards and patients trusted them implicitly, began to crumble.
• • •
I HAD PAID LITTLE ATTENTION to bioethics until I started Vital Decisions with Helen Blank. As we sat at my dining room table into the wee hours, sipping cold coffee and finessing our scripts, she gave me a crash course in the bioethics I had been indifferent to in medical school. I learned of the four principles that formed the foundation. Beneficence requires that the physician act with the intent of helping the patient, while nonmaleficence mandates that the physician avoid harming the patient. Justice is applied when the physician or society regulates the distribution of resources in a way that is most beneficial to the entire population. And patient autonomy implies that the patient is empowered to make decisions free from coercion.
I learned that there is no hierarchy to these principles; instead the practitioner must balance them in regard to each specific case. For example, it may be impossible to pursue both nonmaleficence and beneficence at the same time in a patient who requires a dangerous surgery to save his life. Classic bioethics requires a balancing of principles to best serve the needs of the patient.
In the roiling latter half of the twentieth century, however, the principle of patient autonomy took primacy over the other three. I would assert that this is because it is the only principle that gives power back to the individual patient; the others depend on the actions of physicians.
In theory, this sounds like a very good move. But in practice, it backfired. The belief that more is better runs deep in this culture, and the prioritization of autonomy translated into handing patients access to all the marketplace had to offer.
Starting in the 1930s, new technologies were being developed at a meteoric rate. They were changing the world in incredible ways, and we bought into them, hook, line, and sinker. It was generally believed that if a treatment existed, it must be helpful. And American consumerism played a role, too. If someone is selling, we’re interested. We’re adept at hunting down sources of information and opportunity. Indeed, when we are patients, we reach for the best care we can—and these days we are enabled by the Internet: we Google, we Wiki, we read articles from the Mayo Clinic and the Cancer Treatment Centers of America. Some of us have the resources to fly across the country and spend months in specialty housing at a fancy clinic. In my experience, that alluring possibility—of being the one in ten thousand who recovers—also seduces us further into that trap. We all want to be cared for by “the A team,” or “the best kidney man,” as my grandmother would have said. We want everything we can get.
A typical patient cannot be expected to understand that, in the case of health care, doing more might lead to a worse outcome and more suffering. Most patients, especially dying patients, need the counsel of a trained health care professional who understands the limits of gleaming new technologies. Yet physicians are reticent to speak up for many reasons. First, they themselves are not immune to the “more is better” philosophy. In addition, offering more feels like being a better advocate—it is evident that they are really trying.
And doing more is something patients and families, and even medical teams, can understand and rally behind. It represents hope, competence, and confidence all rolled into one. Moreover, a physician’s recommendation to reduce the intensity of care may be met with suspicion on the part of the patient or family as if he is just trying to save money. I can attest to the fact that it frequently is. And, of course, there is always the fear of a lawsuit; although I have never been sued, I feel subjectively more vulnerable to a legal challenge when I do less than when I do more. For all these reasons, the physician has taken a back seat when it comes to the decision-making process, lest she appear to be impinging on her patient’s autonomy.
And so we have the perfect storm—each of these factors combining to result in a no-holds-barred, full-steam-ahead approach to medical treatment. There are often no discussions about whether to use these treatments, simply informational scripts about potential risks, and these quickly glossed over, as patients almost never reject treatments offered. Unfettered access has become the new medical ethic. And so the focus of the new doctor–patient relationship has become transactional. We are medical vending machines, our treatments arranged behind a piece of glass. Just press D3 and we’ll get going. Unto eternity.
• • •
AS I SEE IT, there is no clear villain here. Where Rockwell’s doctors had seen their patients as people in a wider social context, we modern doctors were trained in silos that focused on the organ, not the organism, the human. It is much easier to continue to treat a particular organ, even if your patient is dying, if you are wearing blinders.
The American Board of Internal Medicine created twenty-one separate medical specialties between 1936 and 2010, each with its own set of complex tools. These paths were not only more financially lucrative than general practice but also provided one with a sense of competence and mastery. Over those years, doctors began to pursue subspecialty training with zeal. In my residency at the Brigham and Women’s Hospital, the 1995 graduating class of sixty produced only three primary care physicians, one of whom eventually went on to pursue a specialty in gastroenterology. Like a blind man touching the side of an elephant, doctors began to lose sight of the person at the other end of their stethoscope.
The patient was similarly blinded by the implication that action implied hope. “Do you want us to do everything to save your sister?” Temporarily saving her lungs might not translate into saving her quality of life, but even a well-meaning physician might fail to clarify this. All the fuss and bother focused on maintaining an organ could easily be misinterpreted by a desperate patient or family member as restorative to overall health. The sheer flurry of activity in the room takes on a life of its own, and expecting a patient to say, “Wait a minute, can we talk about this first?” is a tall order.
And it is rarely clear whom to ask. At the end of life, a typical patient tends to have multiple interactions with multiple subspecialists, one for each organ that is failing. A friend with cancer told me that she referred to her oncologist not as her doctor but as her cancer’s doctor. Each physician makes specialized recommendations for more treatments. Seldom does one of these procedures rule out another—there’s always room for another catheter or drug. And patients simply cannot keep track of who is caring for them. My patients often complain of a virtual revolving door of faces, with doctors coming in and out of their rooms, and no idea who they are or what team they represent. And the numbers of these doctors tend to diminish as they run out of new technologies and treatments to offer.
Consultation etiquette can also serve to keep patients in the dark. In my palliative care role, I am sometimes stymied from presenting the big picture; medical culture dictates that the disease-focused specialists must first weigh in on their treatment recommendations. For example, oncology consultations are usually triggered automatically for hospitalized patients with cancer diagnoses, even if the patient is so critically ill that chemotherapy is unlikely to help.
But hospice services, which provide palliative care interventions to patients either in their homes or in nursing facilities and which have been shown to be of great benefit to patients with cancer, are not available to those receiving disease-focused treatments such as chemotherapy. Yet instead of presenting these two options at the same time and letting the patient choose between them, there is a clear hierarchy to the usual medical protocol. The decision about chemotherapy takes precedence. And when offered, patients almost always accept the chemotherapy. So the unspoken understanding is that I will wait until the oncology recommendations are clear before initiating a larger discussion about goals of care, which might include hospice. Occasionally I simply cannot stay silent and I do suggest that patients question the oncology team further about the benefits and burdens of chemotherapy given their particular condition. I may even introduce hospice as a potential alternative. But it feels as if I am going against the etiquette I have learned as a consultant. Yet how can I expect my patients to make informed decisions if they don’t have all of the information?
And when I am caring for a critically ill patient in the ICU, I often feel compelled to request consultations from a variety of those specialists—the infectious disease team to help me choose the most powerful antibiotics, the gastroenterologists to investigate the source of bleeding in the intestines, the cardiologist to determine whether a patient’s flagging heart can be snapped back into action. The system asserts that we have done our jobs by having the most experienced organ masters opine on our patient’s condition. And they almost always recommend more treatment. And so when the treatments are all applied and the specialists begin to recede, I am often left with an increasingly sick patient facing a full-court press. And there is nothing left to do but to funnel the patient onto the end-of-life conveyor belt, to keep her lungs inflating and to prop up her flagging blood pressure until her body dies.
But that was what the patient wanted, right?
Wrong. Data show that the more patients actually know, the less they want of our treatments at the end of life. A study of 230 surrogate decision makers for patients on breathing machines demonstrated that the better the quality of clinician–family communication, the less life support was elected. Another study showed that people were less likely to want CPR after they learned what it actually entailed. Most people dramatically overestimate the likelihood of survival after CPR. When they learn the real numbers, they are less likely to want it by about 50 percent. In short, when people have a more robust understanding of the benefits and burdens of the treatment they are actually getting, they want less of it.
• • •
I HAVE COME TO SEE that as patients become sicker, they paradoxically find themselves alone. They have been shuttled along the end-of-life conveyor belt into a cold ICU with more doctors but fewer human connections. Rarely is anyone talking; everyone is covered by masks and gowns and frantically doing something. In this system, patients are emotionally abandoned in their darkest moments by the same people they went to for help.
In March 2015, a hastily snapped, blurry photo of an emergency room physician went viral. He was doubled over in an ambulance bay, holding on to a wall for support, grieving the patient who had just died under his care. The lay public demonstrated profound interest and appreciation for this unknown doctor. Why? I would posit that Americans are longing for this kind of connection with their doctors. I believe this image touched a similar chord to that of Norman Rockwell’s images of doctors in the Saturday Evening Post. We all want a doctor who truly cares.
Once it is undeniable that death is inevitable and imminent, the ultimate abandonment may occur. As tension and frustration begin to bubble up from the patient and family—who might be starting to feel that they have been misled—we begin to take our leave of them. Rather than confront our own discomfort or sense of failure, we move on to the next patient. “They’re a difficult family. They want everything done.” Phrases like this are often heard as patients begin to die on their machines, their families baffled as to how this is happening when it seemed there were still options to try. We physicians become numb to those we came to help.
Linda and John were at one of the most reputable hospitals for cardiac disorders in the country. Over many months, Linda had become increasingly debilitated by a poorly functioning heart valve. Her local cardiologist had recommended surgery by the “A team” in this hospital. Three months after the surgery, she remained in the ICU attached to machines.
John, a civil engineer, had made advocating for his wife a second vocation. He had achieved an impressive understanding of the physiology of the heart and the treatment approaches to her disease, and spent most of his days drilling the physicians about each detail as it arose. Their interactions were almost entirely about physiology, lab values, and medication dosages. That is why after three grueling months, with one life-threatening complication after another, John had no idea that his wife was dying.
A mutual friend had shared the highly detailed digital journal John had been keeping of his wife’s medical condition for the last six months. By the time I spoke with him, he was frustrated and exhausted. Although it was immediately clear to me, based on her constellation of medical problems, that his wife would die soon, I realized he hadn’t heard that information from any of her physicians. I gave him my opinion as gently as I could, and he was less surprised than I expected. At my suggestion, he requested a palliative care consultation. Their recommendations confirmed my sense that continued treatment was causing suffering without ultimate benefit to Linda. John decided that it was time to disconnect the machines keeping Linda alive and she died shortly thereafter. John was left with tremendous confusion and a grief that would take years to unravel.
While John attempted to learn about every medical treatment proposed, he had been distracted from his wife’s impending death by the din of continued treatment. The doctors, who continued to shoot for cure rather than care, no doubt wanted to do their best for Linda, and for John. But they too were on the conveyor belt—unable to lift their heads out of the chart to look at this suffering husband and tell him what he desperately needed to know. And what they must have known.
Over the years, I have come across many family members like John. Incredibly committed and knowledgeable. They roll up their sleeves and get to work, but without honest guidance from doctors, their energy can be diverted from where it is most needed. Such guidance requires medical experience, which most doctors have, but, more important, a rarer yet crucial skill—the ability to break bad news and reassess goals of care. John and Linda’s doctors, expert in the care of individual organs, did not have the skills to provide this key context and perspective. At the moment, palliative care is the locus for this skill set, although I hope that one day every doctor will possess it.
As patients gained increasing access to high-technology health care, a countermovement was being birthed. This movement advocated for a very different kind of right: the right to refuse treatment.
In 1975, Karen Ann Quinlan entered a persistent vegetative state at the age of twenty-one. Her body was sustained for a year on full life support in a hospital in New Jersey. Her parents, devout Catholics, believed that she would not have wanted to be kept alive on life support in her hopeless condition. But the state felt that protecting its citizens meant requiring that life be maximally supported, even against the wishes of surrogate decision makers. In fact, the Morris County prosecutor threatened to bring homicide charges against her parents and the hospital if life support was stopped. Eventually, after a prolonged battle in court, requiring an appeal to the Supreme Court of New Jersey, Ms. Quinlan’s parents won the right to take their daughter off life support. She went on to live for another decade, receiving artificial nutrition and hydration by a permanent feeding tube, until she died from pneumonia in 1985.
This was the first case on record supporting the right to refuse life-sustaining treatments. It has been referenced widely as a turning point in the conversation, which began to honor other options besides prolonging life at all costs. Some began to see that there were more nuanced, and less technological, approaches to health care. It was the seed of a new movement, which has continued to grow, albeit slowly, to this day.
A few years ago, at a family get-together, I sat across from Terry, a retired hospice social worker. We compared notes on our varied experiences with end-of-life care in this country. And then she told me a chilling story.
A year earlier, Terry had been thinking a lot about death. Although still spry, she had no close family living nearby and worried that if she were no longer able to speak for herself, she might be “hijacked,” as she put it, into a bad death. She was no stranger to the overuse of technology in dying patients. There was no doubt in her mind that she would never want to be kept alive on machines if she didn’t have a chance of returning to her life as a fully functioning individual. She had documented her preference on an Advance Directive, checking the box that stated:
I do not want my life to be prolonged if (1) I have an incurable and irreversible condition that will result in my death within a relatively short time, (2) I become unconscious and, to a reasonable degree of medical certainty, I will not regain consciousness, or (3) the likely risks and burdens of treatment would outweigh the expected benefits.
Then she had informed all of her close friends of this decision. But the best-laid schemes of mice and men go often askew. It wasn’t long after she filled out her form that she was taken to the hospital with crushing chest pain. Given how much this mattered to her, she had mentally rehearsed this moment and maintained the presence of mind to bring her Advance Directive to the hospital. But when she handed it to the cardiologist in the ER and said clearly, “I want to be DNR,” he looked at her as if she was crazy.
“You can’t be DNR if you want us to fix the problem,” he told her. She was having a heart attack, he said, and the only chance of curing it would be with a catheterization procedure, during which he would dilate any blockage he found in her coronary arteries. But they had to hurry, he admonished, because they were approaching the ninety-minute window for this procedure. Time is muscle, and every minute of delay could cost her.
Things might go wrong during the surgery, he explained, and if she was DNR he couldn’t try to fix them. A puncture of the catheter through the arterial wall, a dangerous arrhythmia that could stop her heart from pumping blood effectively, a stroke, a heart attack. He might even decide during the procedure that the blockages were too dangerous to dilate with a balloon and that she should go for open-heart surgery. He needed the flexibility to treat each of those conditions fully, and her DNR would be an impediment.
Time is ticking, he said. Did she want to receive this potentially life-saving procedure? The risks were very small.
She didn’t want to be on a breathing machine, she insisted. No matter what. She had seen it so many times and it had never turned out well, in her opinion. “Can’t you do the procedure, but let me die if things go badly?”
The answer was a simple no. “I can’t let you die on the table,” he said. The doctor told her that if she wasn’t interested in the procedure, he would call the emergency room doctors in to provide medicines to treat her heart attack. But it would not fix the problem like he could. Then he made as if to leave.
She stopped him. “Just do it,” she said. And with that, she was whisked away to the cath lab, her “door to balloon time” under the requisite ninety minutes. The procedure went well, she didn’t require a breathing machine, and she left the hospital after the weekend. But she couldn’t shake the terror of having had no voice, no choice. She felt abandoned by the system she had come to for help.
This binary approach to care is often practiced by subspecialists such as cardiologists and surgeons. “If you don’t want to go with me all the way, you can’t go with me at all,” is the sentiment. It’s an on–off switch. If surgery is agreed to, a DNR order or a palliative care consultation is almost always off limits. On the other hand, if a person elects or is assigned DNR status, as with Mrs. Z, more aggressive diagnostic or therapeutic approaches are usually taken off the table, even if they might mitigate the patient’s symptoms or allow her to live longer.
So what would have happened if things had not gone as well as they did? What if, despite the doctor’s attempts to reverse a bad outcome, she landed in the ICU on the machines that she desperately sought to avoid? When would her Advance Directive be reactivated and the machines removed? Would that ever have happened?
You may be wondering why Terry’s cardiologist was so unwilling to honor her stated and notarized wishes. I don’t know his motives but speculate that they might involve what is commonly known as the “thirty-day mortality statistic.” This system ranks doctors by the percentage of their patients who die by day thirty following a surgical procedure. The statistic is widely used by payers such as Medicare and state health agencies, with the aim of providing transparency to patients about the performance of hospitals and physicians against the state or national average. In theory, health care consumers will choose physicians or hospitals with the lowest mortality rates for the procedure they are considering.
But the problem is that this statistic, with its impact on the reputations and careers of individual physicians and their departments, may be a disincentive for doctors to provide patient-centered care. There have been worrying reports of surgical patients dying slowly for weeks after their surgeries, for whom a palliative care consultation was delayed until day thirty-one post-op. How often are physicians making treatment decisions that put their own reputations above their patients’ needs?
The initial attachment to a breathing machine often happens in frenzied moments. A person arrives in the emergency room unable to breathe, or a patient on the hospital ward unexpectedly goes into respiratory distress. And so a temporary breathing tube is inserted through the mouth into the lungs—an appropriate response. Without knowledge of a patient and his preferences, it is right to err on the side of prolonging life.
But this lifesaving action sets a path from which deviation is almost impossible. And for those nearing the ends of their lives, this moment may signal the first stop on the end-of-life conveyor belt. Death has been averted; we have succeeded in this most fundamental metric. And thus to consider detaching the patient from the machine at this point can seem almost sacrilegious. In this way, the patient is led inexorably toward the two-week trach and PEG mark.
Two weeks marks the preferred expiration date for the temporary breathing tube. After two weeks, the pressurized balloon stabilizing the tube in the trachea risks causing irreparable damage to the fragile tissues of the airway. And this is why, if a patient remains unable to breathe on her own at this point, a trach is often inserted by the surgeons to create a more permanent and stable connection between patient and machine. Usually performed in an operating room, the procedure involves making an incision at the Adam’s apple, through which the trach tube is inserted directly into the airway, bypassing the mouth and throat. It is held in place by a strap that encircles the patient’s neck. Like the temporary breathing tube, the trach is connected to a breathing machine. But it is a more secure and more comfortable connection; the patient’s mouth is no longer occupied by a plastic tube, allowing for better oral care, and possibly, down the line, food by mouth. And while the patient is in surgery, the PEG, or feeding tube, is often sewn into the stomach as well, replacing the temporary feeding tube. Unfortunately, in many cases these surgically placed PEG and trach tubes become permanent appendages, connections only severed after death.
Any serious medical intervention should be preceded by careful consideration of the patient’s condition, values, and preferences. Some actions beg more reflex than thought—like lowering dangerously high blood pressure or intubating an unknown patient in respiratory distress. But the two-week trach and PEG decision should be anything but reflexive; the potential consequences are so great that I believe anyone being considered for these surgeries should have a lengthy conversation with their doctor—and possibly a palliative care consultant—to explore these surgeries, instead of the usual consent-form transaction. More safety, more comfort, and more life seem, on the surface, to be no-brainers. But dig a little deeper, and there’s a serious catch. Patients on life-support machinery often require arm restraints so that they don’t pull at the tubes and catheters. They become prone to recurrent infections in their lungs, bladders, kidneys, and skin, due to the many plastic tubes inserted in various locations that shuttle bacteria into places where they shouldn’t be.
And by the time a dying body is settled into this new state, it can be extremely difficult to imagine extricating it, for doctors, patients, and families alike. Which is why it’s almost never done. Resources have been committed, both emotional and material, risks have been taken by the patient, operating rooms booked, and tissue cut and sewn. Once these surgical procedures have been performed, the risks met and surmounted, undoing this surgery can seem absurd to the medical team. After the hefty success of keeping the patient alive, of establishing symbiosis with our machines, how could we rip away the cord? And for families, undoing a surgery that succeeded in its intent—to keep their loved one alive—can seem an insurmountable obstacle. Why is this? I speculate that in part this is due to the family having played a key role in this intervention—unlike the initial emergency intubation, which usually doesn’t involve active permission. The family has let the doctors alter their loved one’s body: cut into it, implant a foreign object. And perhaps because they have little other choice, the family will believe in the power of this tube.
Thus these tubes, once inserted into dying patients, tend to remain in place until death. And this requires that the patients remain in a facility with skilled personnel to manage their breathing machines—ICUs, long-term care facilities, or nursing homes. It’s almost impossible to die at home once you’re plugged in. And this is not the only risk. There are others, also potentially devastating. The risk of never tasting food again. The risk of not being able to take care of your own personal hygiene. Of not being able to turn off the game show that the nurse is watching in your room. Of losing your dignity. And of a lonely death in a facility across town from your family.
For these reasons, the two-week trach and PEG mark is a crucial decision point. Yet it is too often not acknowledged or discussed, done without reflection as a next step in the protocol. Consent forms are always signed, the surgical risks always explained. But the more fundamental risks are not discussed. On the doctor’s end, these are difficult conversations to have, especially given our dearth of training in breaking bad news. And we almost never get faulted by colleagues or sued by patients or families for requesting the surgeons to attach the PEG and trach. It makes physiological sense and suggests a desire to keep the patient alive. For some, the possibility of living permanently connected to a breathing machine is an acceptable risk. But there are many who will see this outcome as a nightmare, and to them we doctors owe a frank discussion.
I once took care of a dying patient with Stevens-Johnson syndrome, a disorder in which skin can slough off, causing a burnlike condition. She was bleeding for weeks from her lesions and required daily blood transfusions. With her body days from death, the team met with the son to counsel against performing cardiopulmonary resuscitation when her heart finally stopped. It would be horrible, they said, to put her through this aggressive and futile attempt to bring her back to life. And it simply wouldn’t work. But the son insisted. “Do it,” he told the attending, “or I’ll sue you.” Although the attending brought the case to the ethics committee, the patient died before a decision was made. She was subjected to a bloody code in her final moments on earth, administered by the same horrified doctors who had tried to spare her.
There are certain treatments that Americans have come to see as their rights, whether or not the physician deems them to be beneficial in a particular case. I call these “the Big Three,” and they are the use of breathing machines, feeding tubes, and cardiac resuscitation with electric shocks and chest compressions. Dialysis is a potential fourth, depending on the family’s familiarity with its use in kidney failure. Most physicians feel they are powerless to withhold these treatments if the patient or family insists on their use. They are viewed not only as rights but have also become the de facto rites expected before death.
It seems my colleagues in other subspecialties are more immune to this pressure to perform interventions they deem inappropriate. No family can force a cardiologist to insert a defibrillator into a patient with poor neurologic prognosis in order to keep his heart beating. My neurosurgery colleagues frequently decline to operate on patients with active head bleeds if they don’t believe surgery will help—even if the continued bleeding will result in the patient’s death. Surgeons of all stripes are understood to have the right to take surgery off the table if they do not think it will be of benefit to the patient. But we intensivists do not have the right to refuse to connect a patient to life support if her family insists on it.
I am not sure why this is the case, but I believe it derives from two main factors. First, no one wants to feel directly responsible for a death, even if the patient is clearly dying. Breathing is binary. Either you are inhaling enough to stay alive or you’re not. In which case you die. It’s relatively quick. It’s very transparent. And so if mechanical breathing support is withheld or withdrawn, the doctor involved in that decision might wrongly be perceived as causing the patient’s death. Understandably, many family members share this aversion. I cannot count the number of times I’ve heard family members say: “I don’t want to be the one who pulls the plug”—even in cases in which it is established that the patient would never have wanted to be kept alive on machines. It takes a certain amount of bravery, moral conviction, and strength of character to be willing to step up and make that suggestion or, in the case of a family member, that final decision. It is a lot to live with, for doctor and family alike—and especially so in the face of even one dissenter.
The other key factor here is popular knowledge. Laypeople understand something about breathing machines. And feeding tubes. Everyone knows that bodies can’t survive without nutrition and ventilation. And almost everyone has seen a Code Blue on television shows like ER, where electric shocks and chest compressions almost always succeed in bringing a patient back to life—in utter defiance of the actual data. CPR is often of no real benefit for many of the patients upon whom we use it, and feeding tubes can actually be harmful for many. Pumping artificial nutrition into the stomach of a dying person increases both the risk and consequences of aspirating foreign liquid into the lungs.
But these facts are widely unknown, even by some of the physicians who administer these procedures. So how could the lay public be expected to know, particularly when these treatments are offered automatically? A bioethicist colleague refers to this perception of the intrinsic worth of these often-harmful interventions as “historical artifact,” where the perception of worth that accompanied their development is immune to the developing body of literature that debunks them.
Most people don’t know much about the defibrillators that get sewn around hearts. They don’t know to ask for a removal of the skull if there is continued bleeding in the brain. Yet when it comes to the Big Three, what they do know might hurt them.
Charles was a thirty-nine-year-old man with morbid obesity. The youngest of a large clan of siblings, he was the beloved baby of the family. Weighing around 800 pounds, he hadn’t been out of bed for at least a year. His weight had increased over many years in a vicious cycle brought about by a combination of factors, including a handicap from a gunshot wound, depression, and poor eating habits.
Morbid obesity causes a whole host of physiological problems. It usually starts with compression of the trachea, especially during sleep, which causes a domino effect of organ dysfunction.
By the time Charles made it to my ICU in New Jersey, his body was shutting down. His heart was barely pumping, backing fluid up into his legs, which had chronic ulcers oozing through bandages. He was almost completely bed bound by his chronic illness and had spent the previous year mostly in the hospital, punctuated by periods at home. The admitting diagnoses had become increasingly serious. Where earlier admissions for breathing problems or low blood pressure had required only a few days in the ICU, more recent ones had been longer, some requiring breathing machines. And the most recent admission had been for septic shock. The source was a mystery, and it would remain that way, because he was too large to fit into the CT scanner. And by that point he was too unstable to be transported to the nearby zoo’s CT scanner, which was where we scanned our morbidly obese patients. Although IV antibiotics and fluids had initially improved his condition somewhat, he still required blood pressure support from powerful drips. Something ominous was brewing.
The day before I took over the service, he had begun to bleed from his intestinal tract. The source of the bleeding was not clear. Again, a CT scan of his abdomen might have helped, this time to localize any area of dead bowel. But he was even more seriously ill now for transport—“maxed out” on three blood pressure support drips to prop up his dangerously low blood pressure. His heart was beginning to exhibit erratic behavior that foretold cardiac arrest. In addition, his kidneys had failed, so he was on dialysis; and his liver, which supports blood clotting and thus might slow the bleed, was floundering from the high pressures backing up from his heart.
When my team first presented the facts to me, I knew this was not going to go well. I had been told that any surgery to identify and stop the bleeding was off the table—the surgeons wouldn’t operate on his abdomen without a CT scan, particularly given that he was so medically unstable. It was a catch-22 but made good sense to me. And untreatable hemorrhage atop profound multisystem organ failure, in my experience, can mean only one thing: death.
I told my team that I thought the prognosis was grim. There were some nods. When I asked them if they thought the patient knew that, there was silence. “We’ve talked to him and his family, but they just kept saying they want us to do everything,” volunteered my resident quietly. I told them that it was unlikely that the aggressive measures we typically take when a heart stops would be of help to him, given his devastating and untreatable condition. Moreover, although he did not yet have a breathing tube, he was now requiring a full-time BiPAP mask, and soon even that would be inadequate. What was the plan for when the BiPAP was no longer enough? Would we intubate?
“Let’s talk to him,” I said.
I recognized him when I walked into the room. I had cared for him on one of his prior admissions several months earlier. His previously smiling face was distorted by anxiety beneath the tight-fitting oxygen mask. I moved to his side, my paper gown rustling along the bed. Laying my gloved hand on his shoulder, I said hello. A flash of recognition crossed his face.
“Do you remember me, Charles?” I asked. He nodded slightly. “I took care of you a few months ago.” I waited a few moments, and then told him I was so sad to see him this sick. And that I was worried because things didn’t seem to be turning around. “The doctors have done everything they can to get you better, but you seem to be getting worse.”
“But I don’t want to die,” he said, his eyes widening above his mask.
“I don’t want you to die either,” I said. I waited a few beats. “But I believe that is what is starting to happen. So I want to talk to you about how we should go forward.”
“Please,” he said again, desperate under his mask. “I just don’t want to die.”
As I stood in his room, my residents behind me, I was gripped by a sense of complete impotence. I couldn’t fix this. A young man, beloved by so many, so desperate to live, and I couldn’t save him, despite my many high-tech tools, my understanding of physiology, and my will. And I had to stand there, with residents and medical students who had come to the ICU to learn the magic of these tools, and admit that they were useless here.
I took a breath and plunged in. I told him that it pained me to be telling him this news but that I believed it was time to acknowledge that death was coming. I asked him what was most important to him right now—to be with family, to be comfortable, to see his kids? But he wouldn’t engage with that. He just kept repeating, “Keep me alive, I want to live, come on, doc. I know you can.”
This directive, I want you to do everything, doc, often ends the conversation between doctors and desperate ICU patients. We’ve got a lot of everything to offer, and the patient’s words are considered gold. And so many a critical conversation about goals of care ends this way, with doctors feeling they are honoring patient autonomy by adhering to these requests. But patients in the ICU are often scared, even terrified. Especially right after receiving bad news. I don’t think that what comes out of their mouths in those moments should necessarily be taken as gospel. When patients push for doing everything in the face of no significant medical benefit, we must give them more time, more opportunities to process their shock and emotional distress about death. Often, I have learned, when a patient or family pleads that we do everything, they are really asking for us to stay with them, to not abandon them, to keep them comfortable and calm. To treat them with dignity as they pass out of this world. Not always, of course. For some, there is a value to continuing treatments meant to prolong life even if there is no chance for them to work, even if they will induce suffering. But in my experience, that is really quite a small number of people.
And so I tried to paint a picture of how we could stay close and care for him until the very end. But he kept up his mantra. “Please save me, doc. I know you can.”
I realized that I had to get more concrete now. He was so sick that his heart might stop tonight. I loathed the idea of causing this man any more emotional distress, but I really needed specific answers from him. His insistent plea to do everything would trigger Hail Mary maneuvers that would almost definitely do nothing except harm—the chest compressions that would break ribs, the electric shocks that could burn skin, and the breathing tube that might be difficult to insert through his overcrowded mouth and throat. And was that really what he was looking for? If he were to make it through that ordeal, would he find it acceptable to live a life on machines—for a day, a week, a month? Without his family? Without comfort? Without his independence? He would almost definitely die in the midst of these efforts, his last impressions on this earth a blur of shouts and terror. All that in place of the warm hand of a family member sitting by his bedside in peace and quiet. I wanted to give him the opportunity to opt out of it. The opportunity we all deserve.
But he wouldn’t or couldn’t engage. For every procedure that I presented, he just said, “Please save me.” I reframed my questions in multiple ways.
“Would it be okay for you to live on a breathing machine?”
“Save me, doc.”
“I don’t think we should do chest compressions if your heart stops.”
“Just save my life, doc, I know you can.”
He wouldn’t give me anything, just clung to the overarching plea for salvation. What did this man want me to do? He was still making his own decisions, and within existing medical culture, this abstention meant that all treatment options were fair game. My residents, as they had been trained, felt we had enough information for a clear treatment plan. “He said he wants everything done,” one of them said as we walked out of the room, a touch of anxiety and frustration in her voice. “And the family agrees. I feel comfortable intubating and doing CPR. It’s what he wants.”
But I wasn’t comfortable with it. At least not yet.
I want you to do everything. What do those words really mean? Many doctors take them as a directive to stop at nothing until a certain point during the code, sometimes fifteen minutes, sometimes thirty, sometimes even longer, when the patient remains irrefutably dead despite massive resuscitation with fluids, epinephrine, bicarbonate, pressors, and enough joules of electricity to the chest, theoretically, to “wake the dead.”
All this performed in the name of patient autonomy—honoring our patients’ wishes—and thus considered the humane thing to do. And even though I felt great concern that this patient was making the wrong choice, that in his panic he was reaching for a fantasy that would cause him more pain, it felt cruel to keep pushing him to opt out. And given that I could not opt out for him, I deferred to my residents, shrugged my shoulders sadly, and moved on to my next patient.
Later in the day, one of my residents approached me. She wondered if we should contact the surgeons again to ask if they would reconsider operating. “He keeps bleeding,” she said, “and we can’t stop it without surgery.” Hemorrhage is like a leaky faucet. It doesn’t usually stop on its own. But the risks of opening up this dying man’s obese abdomen with no radiologic guidance were simply too great.
“But this patient really wants us to do everything,” she said, reminding me. “And it’s the only option.”
“Besides dying,” I said. She had nothing more to say. But her frustration at not being able to fix this was palpable. I understood. I too felt distress. I couldn’t fix Charles.
By the next morning he was no longer communicative. Now it was time for the family to step in to become his surrogate decision makers. I met with them in the conference room at the end of the ICU hallway. It was a large family, given his many siblings and their adult children. I rapidly brought everyone up to speed on Charles’s continued deterioration and the inevitability of his imminent death. I expressed my concern about his recommendation that we perform CPR on him when his heart stopped, explaining that I was concerned he had asked for that because he didn’t know what else to ask for. I presented another approach, which would be to provide all of the care that would help Charles now but none that would hurt him, like CPR. When I finished speaking, there was a shocked silence in the room. The family had been listening, but I realized that they had heard only the first part of my message—that Charles was dying. Pandemonium ensued. A cousin began yelling and cursing at me. “You better code him, you hear? You doctors better just do everything.” A brother intervened in my defense. Then others began to step in, climbing over tables, threatening one another and almost coming to blows. I quickly got my residents out of there and called security.
At this point, I stood down. I didn’t feel it would be helpful for anyone if I raised the question of DNR again. Charles and his family all seemed to feel the same way about it, even if I thought it misguided. For now, we would plan a full-court-press resuscitation attempt when he died. We were hitching a ride on the end-of-life conveyor belt. And I had been elected to administer it.
Over the next several days that I was on service, I felt like I was passing a hot potato every time I signed out to the nighttime physician. Running a code on this dying man felt, to me, akin to punching him in the face and would probably have had the same utility. But each morning when I took my place on rounds, watching as he continued to worsen, hearing tales of the nighttime arrhythmias, the massive blood transfusions, I felt the familiar pain of being a perpetrator of an awful death. First, do no harm. Another part of my Hippocratic oath I would be unable to honor. This time at the insistence of the patient and his family.
And there was no way out that I could see. In the textbooks, a physician is advised to hand off cases to another physician if she feels morally and medically at odds with the plan. But those are textbooks, not reality. My colleagues and I were all at full capacity on our services. And why should I have gotten out of doing something that would likely be equally distressing to someone else?
Then, on the weekend, bright red blood began to exit his nasogastric tube into the suction canister on the wall. Several cups’ worth. Although it slowed quickly, he was now hemorrhaging from the top and the bottom of his gastrointestinal tract. More blood transfusions. More infusions of clotting factors. All Band-Aids. Finally, we were told that the lab was running dangerously low on these essential products. As a trauma center, this was not a sustainable situation. The lab would cut us off at a certain point. Using them on a dying patient could not continue. In a sense, as peculiar as it sounds, this news came as a relief. I had been unable to curb the use of the Big Three. Maybe this development would help the family see the light, now that all other paths to cure were closing off, one after the other.
The lab never cut us off. Charles remained a full code until the end. When his heart finally stopped, Charles’s rib cage was compressed and his chest wall shocked multiple times with 200 joules of electricity by staff who knew their actions would never help. I suspect he was completely unconscious by that point, but it was impossible to tell. I was not on service at the time, although I had been in many similar situations. And I expect to be in many more.
At this point in our nation’s history, the Big Three are sacrosanct—if demanded, or even perceived as such, they are usually delivered. And so because of his repeated pleas to do everything and our requisite response to that request, Charles was set up for an ending that might have been worse than death itself.
I met a friend from medical school for dinner last year when I was in his town for a conference. It’s always fascinating to catch up on a few decades of life, like a fast-forward of a family video.
Although we were both pulmonologists, we had taken different paths. Where I had always worked in safety-net hospitals, he had mostly been in private practice. As his practice grew, it had started to provide consultation services to long-term acute care facilities (LTACs).
Although I had been transferring machine-supported patients to the ventilator units in LTACs around the country for years, I had never entered one myself. These facilities are usually far from the hospitals that feed them, both in distance and in philosophy. There was no reason for me to visit. I suppose on some level I knew what I’d find, and I didn’t want to see. His description of these places was exactly what I’d imagined.
He told me of a factory environment where body after silent body lay in adjacent rooms, machines churning away. He almost never saw family members, and his patients were not usually conscious or communicative. It reminded me of many of the long-term patients in our ICUs, where family visits tapered off as it became clearer that recovery was unlikely. Whether it was simply too painful or too logistically complex to continue the daily visits, bodies can often outlast the abilities of loved ones to stand vigil.
My friend went on to describe his typical patient, an elderly, chronically ill person on life support. Usually unresponsive. It got depressing, he said, to care for patient after patient who would never go home. It was discouraging to repeatedly perform procedures that felt like Band-Aids on bodies that were breaking down.
Many of my own patients, once stabilized and trached, are sent to ventilator units within LTACs after discharge. Although some will eventually become liberated from their breathing machines and even go home, the majority of these patients, especially those with chronic diseases, metastatic cancers, and frailty, will be ventilated until their deaths. Many of them will return to the ICU with acute, often treatable problems—a urinary tract infection, a severely infected pressure ulcer, a ventilator-associated pneumonia. As soon as they are stabilized, they are sent back to the LTAC. Even though they often remain unresponsive and dependent on machines, the stabilization and transfer feels like some sort of success to those of us in the ICU, some improvement. But I don’t witness these patients in the custodial care of LTACs, in their mechanized homeostasis with its tedium and muted suffering.
Listening to my friend’s description was haunting and moved me to learn more. The data are grim. LTAC annual admissions tripled between 1997 and 2006, rising from 13,000 to more than 40,000. Of those 40,000 patients, 30 percent were partially or fully dependent on intensive interventions like mechanical ventilation. More than 50 percent of patients with chronic ventilator dependence would be dead within a year. It is estimated that as of 2010, there were more than 100,000 chronically ventilated patients in the United States, a number that is expected to continue to rise. But the most disturbing study I saw was a survey of physicians and caregivers predicting the outcomes of 126 patients at the time of tracheostomy placement, the de facto beginning of prolonged mechanical ventilation for many. Family members and caregivers were more likely than the doctors to expect that one year later, the patient would be alive (93 vs. 43 percent), be generally independent (71 vs. 6 percent), and have a good quality of life (83 vs. 4 percent). The stark contrast of these expectations speaks volumes.
I realized that I was complicit in putting these patients on the medical conveyor belt toward their ultimate, sad destination. And yet what other options did I have? In a sense, the entire system is set up to deliver patients into this custodial care. Where else can we house the many patients who have been placed on the end-of-life conveyor belt?
While ventilator facilities are one of the final destinations of the conveyor belt, other types of institutions feed this system. I’m talking about places that are world-class hospitals, offering highly specialized care for individuals with complex illnesses. They serve, whether intentionally or not, to manufacture hope for desperate patients.
Don’t get me wrong—these are places of excellence with substantial expertise in many multifaceted conditions. Many patients will benefit from their treatments. But the very existence of these facilities supports the notion that there is always another stop, another thing to try. Their vans pick up hopeful patients at airports who have flown in to find their cure. Many have run out of medical options in their own towns; others decided immediately upon diagnosis to go straight for the most specialized care. They arrive at beautiful buildings with harp music in the lobbies and excellent food in the cafeterias. Subspecialists are summoned, chins are scratched—but as with John and Linda, discussions about simple truths are infrequent.
To my mind, these institutions at the sharp edge of medicine have a critical responsibility to be honest with their patients. Yet as we saw with John and Linda, sometimes it is hardest to find the off button in those places housing the most aggressive “A teams.”
Where ventilator facilities in LTACs serve as a means to continue to prolong the lives of plugged-in patients, these hope-filled institutions, in a sense, prime the pump. Both set vulnerable patients up for unrealistic expectations of our medical system: an eleventh-hour cure, a miraculous recovery. There’s no single central conspiracy at work here, but if you build it, they will come. The conveyor belt is here. It requires a loading dock and a storage facility.
• • •
WE HAVE BUILT IT, and they have come.
Health care providers, particularly those in the ICU, have a front-row seat to the suffering perpetuated by the use of excessive end-of-life efforts. I have heard more than a few colleagues express concern about the possibility of ending up that way themselves. But only rarely have I seen anyone take action to prevent it.
A few years back I attended a conference called Mindfulness in the ICU. It was run by Mitchell Levy, a well-respected ICU physician and practicing Buddhist. There weren’t many physicians in attendance; the room was populated mostly by female nurses. I was moved to be in the presence of so many ICU practitioners seeking a different approach. It felt like a new kind of hope.
During the lunch break, I sat with several ICU nurses. We shared stories about our management of patients, particularly those at the end of life, remarking on the staggering amount of overtreatment we were witness to and telling of our personal moral distress.
At one point, one of the quieter nurses murmured, “They’re not going to get me. I’ve got a tattoo.” I did a double take. “Come again?” I asked. In answer, she discreetly pulled her blouse aside to reveal a tattoo on her left chest in flowery cursive that read “No Code.” I stared in stunned silence. I’d heard many colleagues threaten to get such a tattoo, but this time someone had actually made good.
The doctors and nurses I know tend to opt out of the types of treatments I often find myself providing to patients like Charles. And other physicians have noticed the same thing. In 2011, Ken Murray, a retired family practitioner in Los Angeles, wrote an opinion piece that went viral. He had noticed that his physician friends died very differently from the way most patients did. It is a daunting thought that those responsible for dying patients are choosing different paths for themselves than for those in their care.
Dr. Murray’s piece is personal and anecdotal, but research is beginning to follow. In May 2014, V. J. Periyakoil at Stanford surveyed nearly 1,100 young doctors who were finishing their training in a variety of medical specialties. Nearly nine in ten said they would choose a do-not-resuscitate status near the end of life. Yet studies continue to demonstrate that often we doctors do not even offer this option to our patients. More recently, the Journal of the American Medical Association published two different studies investigating the question of how physicians die compared to others. Although the studies demonstrated smaller differences than I would have expected, the differences were there. Physicians were less likely to die in a hospital or other health care facility than was the general population, and doctors received significantly less intensive care before death as well. Physicians, and presumably nurses as well, do indeed die differently from their patients. And so, while we continue to provide “life at all costs” care to others, we become more committed to avoiding that outcome for ourselves.
I share Dr. Murray’s concerns. And I believe that many of my colleagues do as well. It is uncomfortable to watch people suffer, especially at one’s own hands. We can feel like assembly-line workers, our only dictate to keep the belt moving, without the skills or training to find another way. If we’re paying attention, we know that we’re often hurting instead of helping, and that contributes to the profound moral distress that is part of our profession.
My friend’s eighty-year-old mother died recently. She had Parkinson’s disease combined with a breast cancer that had escaped its remission to run rampant through her body. Two months before she died, her oncologist started her back on chemotherapy—“palliative chemotherapy,” he told her, administered not for curative purposes but to improve quality of life. This practice for patients with progressive metastatic cancers is coming under scrutiny for not being of benefit and in fact causing harm. And what’s more, the symptom-alleviating benefits of hospice are not available to those continuing to treat with chemotherapy, palliative or not.
It was not surprising that the chemotherapy didn’t help. Instead, it just seemed to make her sicker. Three weeks before she died, she told the oncologist that she was done. She could not imagine any more chemotherapy. He said okay, and at the request of the family, the patient was enrolled in home hospice.
Two days later, comfortable in her bed at home, hospice nurses in and out of the house, her children flown in and at her bedside, she turned to her son and said, “I don’t think my oncologist liked me very much. If he did, wouldn’t he have pushed me to keep doing chemotherapy?”
This story struck me as so sad and so illustrative. After years of aggressive treatment, all hands on deck, my friend’s mother felt abandoned by the system she had depended on for so many years. Sure, she had the hospice team involved, and her family at her bedside, but where were her doctors? The oncologists, the primary care doctor—these people had accompanied her through the darkest times of her illness, given her hope when she was despairing. Were they her doctors at all? Or were they just her cancer’s doctors, there to dispense treatment but lost to her if that treatment no longer applied? And now, when she needed to feel cared for the most, by the people she had grown to trust, they had simply faded away. Passed her on to the final service.
Diane Meier, a palliative care physician at The Mount Sinai Hospital in New York, speaks to the other side of that equation: the doctor who believes that stopping disease-focused treatment is akin to abandonment. She tells of an oncologist with whom she was co-managing a patient with advanced cancer. He was on the verge of initiating chemotherapy into the cerebrospinal fluid to treat very advanced cancer metastases in the brain. But he confided to Dr. Meier that it wouldn’t help. He was only offering it because he worried that the patient would feel abandoned if he didn’t. Ultimately, the oncologist did the right thing, and the patient went home on hospice. But think of all the patients who are not co-managed by palliative care physicians. I know that many of them receive treatments from physicians who are just trying to show they care. I have done it myself.
And my friend’s eighty-year-old mother was herself trapped in the “more is better” framework, unable to trust her own judgment that enough was indeed enough. In fact, she asked her son to make her another appointment with the oncologists to readdress her decision. Maybe, she told him, if she were feeling better, she’d reconsider and try some more chemotherapy. The irony was that the appointment was set for the week after she died. The abandonment that is rife in this system is multifactorial, but the saddest abandonment is when the patient has so internalized the values of do everything that she loses her own internal compass and abandons herself.