efforts at reform have fallen short
The effort has already begun. We have tried to reclaim death, to make it better, to make it ours. We have touted the value of living wills and other legal documents that outline our wishes concerning end-of-life care. We have hailed the work of hospice programs and used their services in growing numbers. We have even toyed with the idea of allowing physicians to help dying patients kill themselves. Now a movement is afoot to train doctors in how to care for and counsel patients when the end is in sight. Obviously, all of this is important; better services and better training of doctors are desperately needed. But these efforts have not had the sort of impact one might expect, and they never will. Not by themselves.
The legal documents that people often think will protect them from a dreadful death have a woefully poor track record. These papers, known as advance directives, include two forms: a living will and a power of attorney for health care (also known as a “health care proxy”). A living will outlines a person’s preferences for medical treatment at the end of life, typically stating that if the person is near death and has no reasonable hope of recovery, he or she does not want to be kept alive by “extraordinary” or “heroic” means. A power of attorney for health care authorizes some other person, usually a family member, to make medical decisions should the patient be unable to make such decisions for himself.
While advance directives have raised awareness and led to some broad changes, they have surprisingly little effect on how most people die today. They certainly don’t do what most people expect them to do: protect them from a drawn-out, machine-operated death. In the SUPPORT study, researchers found that doctors typically didn’t know about a patient’s directives and that even when they did know of them, the doctor and patient failed to discuss what the patient wanted or how to carry out those wishes. Out of 4,804 patients, a mere 22 had directives that specifically addressed the use of life-sustaining treatment in the patient’s current condition, and even in these cases, half the patients still received unwanted medical care.
Advance directives are ignored not because doctors are overzealous or because hospitals don’t care. They are ignored largely because a generic statement made in better times has little bearing on the complex and emotionally wrenching choices that arise when a life is in the balance.
A standard living will, for example, directs a physician to withhold or withdraw treatment that, in the typical words of the document, “serves only to prolong the process of my dying if I should be in an incurable or irreversible mental or physical condition with no reasonable expectation of recovery.” But what does that really mean? If there is a slim chance that a person will get a little better, is that a “reasonable expectation”? If a person stands to regain some level of consciousness, but no other abilities, is that considered a recovery? Indeed, when is someone even considered to be dying? If a patient is in the early stages of a disease that will eventually be fatal, but maybe not for some time, is that person dying?
Even if the language were more precise, how is one to know what a person was thinking when he or she signed such a document? Did he mean that no life-sustaining treatments should be used at all, under any circumstances? If your father has heart disease and a stroke leaves him partially paralyzed, should he be given antibiotics to treat a life-threatening but treatable infection? If your wife has emphysema and has stated that she doesn’t want to be put on a ventilator once death is near, does that mean that you shouldn’t even try the intervention for a day to two, just to see if it might get her through a temporary crisis? Did your loved one consider a blood transfusion or dialysis to be an “extraordinary measure”? What was the signer’s intention? Why did she want to avoid these treatments? What are you to do?
Because of this confusion, experts often say that a power of attorney, also known as a health care or medical proxy, is the form to have. But most people acting as proxies have only a vague idea of what their loved ones would want. All they know is that this person didn’t want to be “kept alive” or didn’t want “anything heroic.” My own father, a doctor who dealt with dying patients all the time, offered this useful bit of guidance: “When I’m decrepit, take me out with the garbage.”
Advance directives are absolutely worth having. They offer a layer of protection, legally documenting your wishes and tipping the scales when there is debate or confusion about what to do. But they cannot, by themselves, change the way we die.
Hospice programs, which would seem to be just what the doctor ordered, have not had the impact one might hope for either. Hospices operate under the philosophy that death is a natural event and that at some point, rather than fighting vigorously to fend off death, all efforts should be focused on making the most of life—largely by keeping the person as comfortable and involved as possible. Hospice care is sometimes provided in a special hospice building or in a wing of a health-care facility, but usually it is offered within the patient’s own home with the help of the family. Doctors and nurses focus on pain and symptom control, while social workers, counselors, clergy, and other staff members help patients meet any personal goals they might have, repair torn relationships, and find spiritual and psychological peace. Hospice workers also guide family members through the day-to-day work of caregiving and provide them with much-needed encouragement and counseling. (For more on hospice care, see pages 145–48.)
Yet, with all they have to offer, hospice programs serve only about 15 percent of the people who die each year—only a small fraction of those who could benefit from such services. Furthermore, those who hook up with a hospice typically do so very late in the game, on average within one month of dying, and often just days, or even hours, before death. At this point, patients are so sick that they cannot communicate or gain much from counseling, and pain has rooted itself so deeply that it is difficult if not impossible to treat successfully. This late in the process, all that hospice workers can do is provide what Carolyn Cassin, the former president of Hospice of Michigan, calls “brink-of-death care.”
“At that point, we are literally managing the dying process. We are not managing the dying experience, which should take place over weeks and months, when a person can think and talk,” she said. “It’s a travesty. When you see it done right, when someone has the time to say good-bye, to leave whatever legacy they want…. It is not macabre and horrible. It’s wonderful.”
Physician-assisted suicide raises all sorts of fascinating legal, ethical, and medical issues, but when it comes down to it, few people want to kill themselves, even when they are terminally ill. We might think we would choose such an option, we might swear that we would take that route, but for most people, when they are standing on the edge of an abyss looking into the darkness below, a loud voice screams out, “Hang on!” even if the plan all along had been to jump. In Oregon, where physician-assisted suicide is legal, fewer than 0.1 percent of dying patients have killed themselves.
Dr. Kathleen Foley, a neurologist at Memorial Sloan-Kettering Cancer Center who is one of the most widely respected authorities on end-of-life care, says that when patients ask her about suicide, she tells them, “I can help you live. I can allow you to die. But I can’t give you a drug and say take it whenever you want. That’s just not who I am.” Hearing this, these patients still stay with her. “They are comforted by the fact that you say, ‘I value your life. I don’t mind taking care of you. You are not a terrible burden, or if you are a terrible burden, I’m still going to take care of you. I am not going to abandon you,’ ” Dr. Foley explains.
Experts in end-of-life care contend that if suicidal patients were treated for depression and offered comprehensive palliative care (which is aimed at comfort rather than cure), and if their families were given adequate support, the idea of suicide would be not only unpopular, but almost unimaginable. So while physician-assisted suicide is an intellectually absorbing proposal, if it were broadly legalized it would probably not affect the way the vast majority of us die.
Finally, there is improved doctor training, which means teaching doctors how to care, both physically and emotionally, for patients who are going to die. This effort holds the greatest promise, for if doctors were better guides, this trip would not be so torturous. Most doctors have no idea how to deal with dying patients and their families; they desperately need training and role models in this incredibly difficult aspect of the job. But even better trained doctors won’t completely solve the problem.
The reasons this and other efforts can’t drastically change the way we die are numerous. But one obstacle stands out above the others, an obstacle that must be addressed if we are ever going to find a more peaceful dying. That obstacle is us.
We can blame the doctors and the hospitals, the legal system and the insurance programs, but we, the patients and family members and loved ones, hold a great deal of sway in how we die. No matter what forms have been signed or promises made in advance; no matter what excellent guidance a doctor might offer; no matter what services are available, the fact is that when life and death decisions arise, most of us falter. We are not prepared to stop life-sustaining treatment; we are not ready to switch from hospital to hospice care; we are not open to hearing a doctor’s dim prognosis, no matter how sensitively it is delivered.
Standing at the bedside of a loved one, we freeze up, unable to think clearly, to digest all that must be digested, and to do what we might even know in our hearts should be done. We never expected it to come to this, or for it to be like this. The choices are more complicated and the emotions more acute than we ever anticipated. We aren’t sure what the patient was thinking when she signed her advance instructions. We don’t feel that it is quite time for hospice care. We don’t want to forgo some chance of survival, no matter how slim. And, in all honesty, we aren’t ready to let go. With a loved one lying there, still warm to touch, the decisions are too monumental. Maybe a ventilator would be okay. Maybe dialysis isn’t such a bad idea. Maybe resuscitation should be attempted. Maybe this person I love can hang on just a little bit longer because my heart is breaking into a zillion pieces and I don’t want to let go. As one woman said when her husband lay in an intensive care unit with advanced cancer, severe infection, and respiratory failure, “He wouldn’t want this, but I cannot bear to lose him.”
In all our outrage over how miserably people die, we forget that we, the patients, but particularly the family members, play a difficult but decisive role in how each death occurs.
“We take our cues from the patients,” says Dr. Michael Jacobs, a professor of medicine at Stanford Medical Center, repeating a line I have heard countless times. He leans back in his chair and offers a story that most doctors can repeat in one version or another. He had a patient, he says, a woman in her mid-thirties, who was diagnosed with metastatic colon cancer—the cancer had spread to other parts of her body and was considered fatal. “It was clear in the beginning to everyone involved that she wasn’t going to be cured, but she and her husband didn’t want to hear that at all,” Dr. Jacobs said. The couple wanted to pursue treatment, any treatment. Even when the cancer had taken over the young woman’s lungs, her liver, and other areas of her body, they continued to seek out specialists, aggressive procedures, experimental treatments, and alternative therapies. Just weeks before the woman died—her belly swollen, her appetite gone, her exhaustion visible, and her lungs laboring for each drop of air—her husband was investigating experimental gene therapy. Three days before she died they convinced an oncologist to start her on an extremely toxic experimental chemotherapy.
“For me to say, ‘Listen, now, you’re dying, and we must talk about the fact that you’re dying. This is stupid for you to do this,’ that’s not my role,” Dr. Jacobs says. “My role is to listen and to be as sensitive as I can be to the patient first, and to the family. This woman and her husband were of the mind-set that somehow she was going to be cured.”
Perhaps there is something Dr. Jacobs could have done or said. Perhaps somewhere along this awful trip, there was some way that he could have helped them to see the futility of their efforts, the needless pain they were enduring. Or perhaps there is something he did say—some vague comment or hopeful aside—that led them to believe that they could still rescue this dwindling life. It’s hard to say. The cues are subtle and the dance is complex. When the subject is terminal illness, people hear what they want to hear, and say things that aren’t what they mean. The doctor, the patient, and the loved ones all play a role in this confusion. Clearly, this patient and her husband had definite ideas about how they wanted to handle her illness, and Dr. Jacobs was not in a position to force them to take another course. He had to respect their views, their needs, and their way of coping.
Dr. Kenneth Prager, chairman of the medical ethics committee at New York Presbyterian Hospital, gets annoyed when people place all the blame on doctors. “Of the cases referred to my hospital’s medical ethics committee concerning inappropriate care of hopelessly ill patients, by far the greatest percentage involve situations in which the family or the patient, not the doctor, insists on heroic and costly treatments,” he said. “If you were to walk around intensive care units and look at people who are—quote, unquote—kept alive inappropriately, you would find that nine times out of ten it is because the patient and family want it that way, not because the doctor does.”
Walking around an intensive care unit as Dr. Prager had suggested I do, I came upon a semiconscious 85-year-old woman with a thick ventilator hose blocking her mouth, intravenous lines in her arm and chest, a blood pressure monitor on her finger, and assorted lines running under the sheets to her legs, crotch, and belly. Her eyes were closed. She did not move. A cardiac monitor overhead recorded the steady rhythm of what remained of her life: beep … beep … beep … beep … beep. A nurse outlined her medical history for me. She was old and weak, with numerous organs in decline—heart, lungs, kidneys. She had been brought in initially because of massive internal bleeding, and then, having sucked blood into her lungs, she was treated for pneumonia. With that attended to, she was now being treated, quite frankly, for death. That is, all of her systems were failing.
It is not difficult to see how one thing had led to the next, but why was she still here receiving all this invasive care? Why didn’t her family and the doctor let her go? The nurse shrugged. “Her daughter said, ‘I don’t want to hear about anything bad. I want you to do what you can to fix her.’ So we do a little of this and a little of that. We can keep people alive, but we can’t necessarily make them better.”
We think this won’t happen to us, that we wouldn’t do that to our loved ones or that they wouldn’t do it to us. We know better. But when we are there ourselves, the story often doesn’t play out according to our plans. Quite often, even patients and families who have sworn that they wouldn’t accept invasive care end up getting it simply because when it is time to say stop they aren’t ready to do so, they don’t know how to do so, or they don’t see it as an option.
“If people have never been through an experience of someone dying, then they don’t have a clue about any of these things. Not a clue,” says Dr. Foley. “Even the most intelligent people say they never had a clue what was going on, never caught on. One, they never knew the person was dying even though the signs were all around them. Then, when they were dying, they didn’t know what to say, what to do, they didn’t know how to feel. They were just numb, and then it was over.”
John McGuirk is a lawyer who has drafted hundreds of advance directives for clients. He thought he understood what the legal papers and the issues they cover were all about. He thought so, until his own father lay in an intensive care unit, “wired,” as he puts it. “I walked past his room. I didn’t even recognize him. He looked like this ancient man. He had tubes all around him. He weighed about 90 pounds.”
It wasn’t clear what was wrong with him, but John and his siblings knew that their father was dying. And yet, they didn’t know. They weren’t certain. “The problem is, it’s not all that defined, and things happen quickly,” John explains. “It’s not black and white. No one said he was terminal, but we were thinking it. In your heart of hearts you know. But you’re not prepared…. Maybe if I’d known more about what ‘life-sustaining treatments’ were…. The whole thing is shocking.”
Joann Owen has stood in that place too. In 1984, Joann’s mother, Violet, had surgery to remove a second brain tumor, and in the years that followed the procedure she repeatedly told her family that if anything were to happen, she did not want to endure “that sort of thing” again. “She would say, ‘I’m tired. I’ve had enough. If anything else comes up, I don’t want any more,’ ” Joann said. Violet never signed an advance directive, but her family felt that her wishes were clear. Then one afternoon, Violet went to the emergency room because she didn’t feel well and her heart was beating rapidly. She stayed in the hospital for a few days while the doctors did some tests, and during that time she had a heart attack. Faced with a medical emergency and no clear instructions on what to do, the doctor put her on life support in the intensive care unit. She remained there, semicomatose, for a week, until she died. To this day, her daughter is pained by the memories.
In the ICU, Joann said, there was no room for intimacy or conversation and physical contact was all but impossible. During the rare moments when her mother was alert, she was alarmed to find herself in the hospital. “Because of all the tubes and this and that, you feel like you can’t physically help, and it’s hard to stroke someone or be near them. And you can’t even imagine saying good-bye because it’s like they are not even there. You’re an observer. It was the equivalent of being at a wake. Everyone is just sitting there, marking time. It’s like a death watch. I look back and wonder, ‘What were we thinking? What happened here?’ ” Joann laments, “but the whole thing just snowballed.”
At 78, Violet Owen had endured heart problems for some time, but for whatever reasons, her heart was not of primary concern. “I think she understood that we wouldn’t do anything extraordinary, but I think she was thinking in terms of an operation. She was thinking in terms of her brain surgery. I don’t know. She didn’t ever spell it out,” Joann said. “She had had angina for years, but that wasn’t what we considered to be her problem.”
If anyone had ever talked with Violet about what she meant by “nothing extraordinary,” and “I’ve had enough,” and then had discussed her wishes with the doctor, perhaps he would have known not to intubate her. Had the family known more about the medical system and the options available and what their mother wanted and what she didn’t want, perhaps they would have asked that the ventilator be removed so that her dying would not be prolonged and so that they could say good-bye to her in peace. But little was known or discussed ahead of time. They weren’t prepared to handle this moment, and so they saw no alternatives and made no decisions.
“We assumed we were pretty savvy. We felt that we knew what was going on. But we were stunned,” Joann said. “Every one of us kept saying, ‘Why are they doing this? Why can’t we stop this?’ Not one of us thought that we as individuals could stop it.”
The point is, we die tethered to machines and enveloped by pain not simply because doctors aren’t trained and palliative services are limited, but also because we, the patients and families, are simply not prepared to, or in some cases are not willing to, talk about death, much less allow it to happen. We acknowledge the horrible deaths of others and say that we want something else for ourselves and our loved ones, but then we blindly follow the same arduous path. We follow that path because it is there, it is well-worn, it is routine. We follow it because most of us don’t know of any other path. And we follow it because when death draws near we are stymied by grief, disbelief, and ignorance. In a state of total devastation, we cannot begin to accept that someone we love is dying; we certainly cannot take action that will allow that process to happen.
This response is not all that surprising. Millions of years of evolution have instilled in humans a tremendously powerful—and at most times, very useful—instinct to live. We are programmed to keep fighting and screaming for help even when the saber-toothed tiger has us securely in its jaws. If we are on the sidelines and not running for our own lives, we wildly hurl any sticks and rocks that we can find at the beast. We are built to survive and to keep our loved ones alive. It is in our chemistry, in the core of our being. We don’t want death to happen under any circumstances. In the past, we struggled and either we escaped or the tiger had a tasty meal; we survived the fever or we died. Nature called the shots and people knew how to respond. But all that has changed.
Over the past century—and especially in the past couple of decades—two things have happened. One, medicine has presented us with choices that we never had before, choices about when we will die and how we will die. Two, because it now usually takes place in an institution staffed with professionals instead of in the home, we have lost our familiarity with death and so we don’t know the rituals and behaviors that should accompany it anymore.
These recent developments have put us to a bizarre test. Our most primal instincts tell us to fight to stay alive and to keep those we love alive; and yet, in this modern world we are supposed to make a carefully thought out decision about whether or not to allow death to happen, and, in many cases, when and how to let it happen. We are expected to say, “All right, we will allow this death to occur. We will skip this treatment or stop that treatment, and let this person we love depart from this world and from our lives.” Unless there’s been a fair amount of forethought and experience, it is extremely difficult to do such a thing. Unless we are ready, and truly determined, our instincts will almost always win out, or we will simply look on with horror and, by virtue of making no decision, continue to press on toward the ending we dread.
And so, rather than using medicine’s new powers to our benefit—to ease the pain of death or to buy a little time when there is something important left to do—we let them be used to our detriment because not just the doctors, but we ourselves, are distanced from the reality of death and naïve about the decisions we must make at the end.