by waiting, we often miss the boat
Repeatedly people have said to me that they don’t need to question the value of aggressive or experimental treatments, they don’t need to consider hospice care, they don’t need to think about, much less do anything about, legacies or wills or comfort care or apologies or forgiveness, because they have not crossed that line. They are not at that point. They are not there, not yet.
Along with balancing hope, we must also be careful not to wait to be “there”—that place where we recognize and respond to the likelihood of death—for such a moment, such a clear turning point between fighting illness and preparing for death, rarely occurs. We must not wait because by the time we determine that we are “there,” at that magical border, we have, quite often, missed our chance.
A small circle of doctors, medical trainees, and nurses are standing beside the nurses’ station in a hospital intensive care unit. They are discussing whether or not to put a 77-year-old woman with end-stage emphysema and a weak heart on a ventilator. They are facing the woman’s room, separated from her only by a large glass window. But they do not look at her. Instead, they listen intently to each other, study their notepads, and glance occasionally at a computer screen that holds her medical history and statistics from the machines that monitor her body’s operations.
The woman’s bed is in an upright position, but she is slumped down, her frail body sunken into the fold of the bed. Her head hangs to one side, too heavy for her to hold up. She appears small and much older than her years. Her white hair is wispy and disheveled, her face aged by sickness, pain, and exhaustion. A chalk-blue hospital gown falls loosely on her bony shoulders, revealing the upper part of her chest, a translucent map of veins and liver spots. Her thin arms, embedded by intravenous lines and monitors, shake and tremble wildly as she struggles to breathe. She cannot hear the discussion that is going on, but she stares at the group of men and women in white coats before her, her eyes frightened and searching for help.
According to the machines, she is getting enough oxygen, but the sensation of not getting enough air, of not being able to draw in a full breath, is making her panic. With some effort, she lifts her head and looks frantically at the doctors, waggling one shaky finger in a futile attempt to get their attention as they mull over her future.
Several members of the team are reluctant to intubate her because they doubt that she will ever get off the ventilator once she is put on it; such patients often become dependent upon the machine and then have trouble breathing on their own. One doctor explains that if she could only calm down she would not need “the vent.” It is fear, not a shortage of oxygen, that has her in this state. But, he goes on, they cannot give her sedatives to calm her because the drugs would further jeopardize her ability to breathe. Other members of the team argue that she should be hooked up immediately “to ease her suffering.” Keeping her off the machine is cruel. Who knows, they say. She might get off the vent at some point, and maybe even back home. It’s not probable, they concede, but “in theory,” it is possible.
The woman has a Do-Not-Resuscitate order in her chart indicating her wishes to be allowed to die should her heartbeat or breathing stop, but neither have stopped, and according to her nurse, intubation is not addressed; only manual chest compressions are specifically forbidden.
A member of the team says that when the woman’s children were asked what should be done, they said not to intubate her. (There is no family member here at this time; they have been contacted by phone.) But when the patient herself was asked about being put on a ventilator, she said yes. One doctor and a nurse from the group feel that this is all they need to go on. She wants it, give it to her. The others aren’t sure what to make of her response because she is confused and says yes to almost every question put to her.
The discussion goes on until a decision is made to not make a decision. They will wait. They will hold off on the ventilator for another day and then decide. Twenty-four hours later, the group reconvenes, but there is no new information to help them. The woman is the same, only more exhausted and more anxious. And so they decide to wait another day. No one even suggested that someone might simply sit with her, hold her hand, and offer gentle reassurance.
Was this the time to stop the fight and let her die peacefully? Was she “dying”? Should her children have come rushing in to say goodbye? Should a local hospice have been called? Or not? This scene, which is not uncommon, raises a number of issues, but the point is that managing death is not a simple thing, primarily because we don’t know when to start that process. The words we use to describe our cut-off point, words like “hopeless,” “beyond recovery,” “futile,” and “dying,” are often meaningless when such a decision must actually be made. In most cases, illness and treatment decisions do not involve such absolutes. The prognosis is largely guesswork. Further treatment holds some promise, however remote. The patient’s competency is questionable. And what will best confer comfort—life support or some other measure of care—is a matter of opinion.
We think, as we put ink to our living wills or make promises to our loved ones, that we won’t end up on machines, lingering on the edge of life. We won’t continue brutal treatments that hold little hope. We look at other people’s horrific deaths and insist that we will never end up like that. Our loved ones won’t die like that. We’ve signed the papers or voiced our wishes or made our promises. We know what we will do when the question is put to us: “Do you want to drag this out with some painful, invasive procedure that is essentially futile, or do you want to let her die peacefully?”
The problem is that the question is rarely so black and white. Dying is a complicated affair that involves multiple shades of gray. As medicine has developed more weapons, more ways of battling disease and keeping people alive, and more ways of fighting disturbing side effects, the question of when to stop has become more and more confusing. Quite often, there is no definitive moment when invasive procedures should be abandoned for palliative care, no unmistakable border between beneficial and futile, no turning point when a person goes from “living” to “dying.” Today, people can live for years with terminal illness, suffering occasional scrapes with death and then rebounding.
As a patient inches his way across this uncertain terrain of illness and disability, there is usually some chance, however slim, that a treatment will help in some way, that the person will get a little better, or at least get worse more slowly. There is often some experimental treatment or alternative therapy that offers hope. And there is almost always some success story, some unusual patient who beat the odds, recovered, came back to life, spoke again, walked, lived longer than others.
Patients and families expect clear markers. We want to be told when it is time, without a doubt, to stop and switch tracks. But medicine doesn’t have any such answers. Better statistical tools and computer programs have helped some, but still, doctors don’t know when death will occur and they often don’t know for sure whether further treatment will be of any use. They can give pretty good timelines with cancer, but not with many other life-threatening diseases. They can talk only of past experience and probabilities. And those probabilities are anything but simple.
In a paper describing how doctors might better predict survival times and then relay that information to patients, the authors, who were part of the large SUPPORT study, presented this scenario: Mr. Jones has lung disease and has made it clear that when death grows near, he doesn’t want to be put on a ventilator. So the doctor sits him down to give him some information. He explains that, given his current condition, Mr. Jones has a 50 percent chance of dying within two months, a 10 percent chance of living for six months, a 1 percent chance of living a full year, and a 10 percent chance of dying in the next ten days. In light of these statistics, would Mr. Jones want to be hooked up to life-sustaining equipment if he becomes short of breath?
Obviously, this is not the sort of question poor Mr. Jones expected.
The crazy percentages involved reveal only part of the predicament, because tossed into this statistical stew are real people with real emotions. We are analyzing the probabilities and making decisions, sometimes for ourselves but usually for a loved one, when our hearts are heavy, our disbelief is paralyzing, and our instinctual desire to hang on is at full throttle. Imagine it. Your 74-year-old father is lying in a hospital bed, extremely ill. You’ve never had as close a relationship as you wanted, but you love him dearly and you aren’t ready to give up your quest for some resolution or understanding. You need time with him. You don’t want to let him go. Or maybe it’s your wife lying there, or your sister. She’s only 40 and she has young children at home. Or maybe the person in that bed is a child, your child, a tiny, sweet-faced boy whom you adore with every cell of your body. What are you going to do when the doctor says that a particular treatment has a 70 percent chance of extending life several months, but that it might cause unpleasant side effects, like nausea, cramping, infections? Would you agree to it? What if the treatment had only a 20 percent chance of prolonging life and the side effects were more severe? What if the treatment might extend life only another few weeks, rather than months? What about using a treatment that is so new that the probabilities and side effects are unknown? How far are you willing to go? How much pain is acceptable? What odds are worth pursuing? At what point would you say stop?
As long as a treatment holds some hope of doing something, as long as one statistic seems favorable, as long as there is one example of someone who beat the odds, how does a person ever say no? How do you ever stop treatment? The fact is, most of us don’t. We push ahead, pursuing one treatment after another, waiting to come upon some proclamation that “nothing more can be done.” But instead, the odds just get slimmer and the costs more burdensome, and we keep on fighting because we are not “there.” Not yet.
Although we say that we don’t want “extraordinary means,” by most any definition, that is what we get. We forge ahead and then either the patient dies during the course of treatment, or the family finally seeks palliative care, but only after the patient has suffered terribly and is no longer nearing death or preparing to die, but is actively dying. He is bedridden, dependent, and only partially conscious. Now there will be no closure, resolution, or legacies. There will be little more than heavy narcotics to see him through the end.
We wait because it is too painful to accept that someone is dying, and because we don’t want to miss out on a treatment that might, just possibly, prolong life. And we wait because we never anticipated the questions, never understood the issues, and never prepared ourselves to call such difficult shots. Suddenly, standing beside someone we love, minuscule odds and physical suffering seem better than no chance at all. And saying “stop” when we’ve had no preparation to do so is nearly impossible.
Obviously, we cannot wait to be “there,” at some neat boundary between “living” and “dying.” We have to accept that we are already “there” as soon as we or someone we love has a potentially terminal disease. We are “there” throughout an illness, focusing on life but also preparing for the possibility of death. We are “there,” making choices and taking actions that affect how we will live and how we, or our loved ones, will ultimately die.
Even if a person is still seeking a cure, and certainly when no cure is possible, we need to have our visits, write our notes, open our hearts, and be with him. We need to be aware, always, that we simply don’t know what’s going to happen, or when. And therefore, we can’t wait. Certain things must not be put off, for there may be no second chances.
People worry that addressing problems in a relationship or expressing one’s love or thanks casts undue gravity on the situation (If I do that he will think that I think that he is going to die). The fact is, the situation is serious, even if it is not fatal, so a little gravity is all right.
If we are going to avoid this waiting game, we also need to realize that each time we make a decision about drugs or scans or radiation or surgery, we are charting a course. With each decision we gain something and give something up and we affect the final outcome. With each incremental step, we need to ask difficult but critical questions: Why are we doing this? What are we trying to achieve? What are we losing in the process? When will we stop? And how can we prepare ourselves for what lies ahead? We must ask these questions because they are pertinent. We must ask them because we are “there.” We must ask them, as people never have before, because although medicine has not beaten death, it has transformed it. Drastically.
We are in a new era in which we must decide not simply whether to quit, but when to quit. We are not just deciding whether or not to prolong death, but how we might make the most of the end of life. We are not simply deciding whether or not to keep a dying person on a ventilator, but whether we will accept the ventilator in the first place, whether we will proceed with a treatment, or whether we will even call an ambulance when things get rough. In other words, we are no longer deciding simply whether life is sustainable, but whether it is desirable.
Now that medicine can take us further than ever before, it is up to us, as individuals, to decide how far we want to go. We have to ask the questions and then decide: When do the burdens of a treatment outweigh the benefits? What level of pain is bearable? What degree of confusion is tolerable? What sorts of disabilities are acceptable? When do we want to stop treatment and instead make the best of whatever life remains? Rather than waiting for the point of zero return to switch tracks, we have to actually look for opportunities, for openings, to make death peaceful. We have to look for moments when we can still find comfort and make death more gentle.
Will we be haunted by doubts if we opt for palliative care before invasive care is deemed “futile?” What if we had kept going? What if we had pushed harder? What if we had chosen the surgery, the chemotherapy, the ventilator? Of course we will. Until we get used to this new assignment, until we fully understand and accept what death is today and how we might influence it, we will wonder. But we also have to consider what we might have lost if we had kept on pushing the envelope, opting for more treatment, more days in the ICU, more pain.
None of this is going to be easy, but then no one said it would be. Medicine has brought us to a new place, and we have to respond by asking difficult questions, weighing confusing options, and making excruciating decisions that people have never had to consider before.
rosemary’s story
It is late January in New York City and the air outside is cold and cheerless. The air on the seventh floor of Lenox Hill Hospital, where I have spent much of the afternoon, is stale and smells vaguely of urine and antiseptics. The hallway is cluttered with meal carts, linen carts, wheelchairs, and blood pressure machines, so it takes a lot of maneuvering to stay out of the way of the nurses, aides, and orderlies who brush by. I am waiting here in this hallway because a family is about to talk with a doctor about their mother’s diagnosis and treatment options. It is one moment in a lengthy illness. It is a conference that occurs many times a day in every hospital in this country. Five siblings file quietly into the hospital’s “family lounge” ahead of me.
Their mother, whom I will call Rosemary for the sake of privacy, is 73 years old. She has been failing here and there for more than a year—cataract surgery, headaches, inexplicable abdominal pain, foot pain, forgetfulness, loneliness, and a declining interest in life. Over the past year, she sold her summer cottage, signed a will and advance directives, bought long-term care insurance, and squirreled herself away in her uptown apartment.
A few days prior to this meeting, she became delirious, fell and broke her pelvis, and was hospitalized. Several days of tests revealed that she has a rare disease called multiple myeloma, a cancer of the blood plasma that cripples the immune system, decimates bones, and wreaks havoc in the kidneys. It seems that the cancer was responsible for her previous headaches and foot pain, as it can cause tumors in the bone. The doctors suspect that she also had a stroke, leading to her current state of confusion.
Now her children sit on toothpaste-blue vinyl chairs, facing one another uncomfortably, as a young doctor glances at his notes and outlines the facts, most of which they already know. Rosemary’s cancer is stage three, advanced. While there is no cure, chemotherapy might slow the progression of the disease. The news, while expected, is devastating nonetheless.
The doctor recommends a type of chemo that is given through a portal, or permanent opening, in her chest. The drug combination is milder than most and shouldn’t cause the usual hair loss and nausea, but it does require that she come into the hospital for four days each month. He drones on, reeling out statistics and opinions, flipping pages in his notebook back and forth. Clearly, he wants to help, to say the right thing, but he is desperately awkward and uncomfortable here, in the midst of all this silent despair. The average life span, with treatment, he says, reciting from his notes, is two to five years. Without treatment, people live an average of 15 months. Of course, these statistics include people much younger and healthier than Rosemary, so the time frame is likely to be shorter for her. In any case, the cancer eventually leads to infections, bone fractures, and kidney failure. In addition to all of this, Rosemary’s pelvis is not healing well and it is not clear how much mobility she will regain, if any. And her confusion, which now has her drifting along the edges of lucidity, is not likely to improve significantly.
On the face of it, the choice seems obvious: the family feels that they should at least try the chemo, to see if it will help. No one has presented any other choice, and various consulting doctors have expressed some surprise that the treatment hasn’t been started already.
But the siblings don’t want to rush into anything. Some don’t want to miss out on a valuable treatment—indeed, they are asking about experimental treatments and more aggressive approaches. She was well just the other day; there must be some way to return to that place. Others are concerned because they don’t want to make their mother suffer needlessly, and they don’t want to subject her to something that she wouldn’t want. Rosemary has stated quite clearly in the past that she would not want chemotherapy if she had terminal cancer. But no one is sure why she didn’t want it. This treatment shouldn’t cause the side effects that may have scared her in the past. It does require, however, that she return to the hospital each month, which, given her current state, seems like a formidable task.
As the siblings contemplate all of this, their mother lies in a “semi-private” room down the hall, her skin grayed, her eyes dulled, her hair limp, and her movements slow and deliberate. She recognizes visitors, but then watches with little expression as the conversation in her room goes on without her. It’s not clear how much, if any, of it she grasps. “Let’s go upstairs to my room where we can be alone,” she mutters suddenly. “My room is empty.” Later she talks about a party she’s going to, a walk she’s taken, a new house she’s moved into—none of which has happened or is about to happen. Perhaps she is delirious; perhaps she is aware of the trip she has embarked on here.
On the one hand, she still finds joy in being with her children and grandchildren and her confusion seems to have her, while not in this world, at least in a happy place. On the other hand, she is bedridden, incontinent and disoriented, headed, it seems, toward only more disability and discomfort. Is chemotherapy the right option if it promises only to keep her in this state for a little longer than she might otherwise?
The children think their mother should decide about the chemotherapy for herself, but there is some question as to whether she is lucid enough to make such a decision. She has named her son as her health care proxy, but no one can agree upon whether that power has passed into his hands yet. One doctor says she is not competent to make decisions for herself; another says that perhaps she is. And, indeed, at times she is and at times she isn’t.
The children wait until a more lucid moment and put the question to her. But both because of her exhaustion and because of her nature, she tells them to decide. “I guess I should have the chemotherapy,” she says wearily, and then adds, “What do all of you think? You decide.”
And so, they are back to where they started, conferring over their mother’s future, asking questions about treatments, weighing the quality of life against the quantity of life. If the chemotherapy gives her an extra few months or even a year, what will that time be like? If she is so confused that she doesn’t know where she is, if she can’t get up much less out, if she can’t read the books that she loves, if she needs 24-hour care from strangers, what kind of life will they have given her? Will she be in pain? Will her bones become so brittle that they break at every turn? Will she need dialysis? Will living in the hospital for four days of every month be bearable? Is there some point at which she might have to be in the hospital for longer stretches? In the end, will the chemotherapy give her more life, or will it only give her more days of discomfort, devouring precious time with its toxicity?
They don’t know what to do. But they do recognize that they are “there,” trying to give their mother the longest life, but also the best possible death. They do not want to plunge forward with treatment, waiting blindly for some future moment when the answers are obvious and the opportunities gone. They are “there,” making horrendous decisions that people never had to make before, but that are becoming common in our time.