Fostering hope in the face of death

Hope for a meaningful quality of life

Modern medicine is driven overwhelmingly by the goal of staving off death. We all know that we will eventually die. But we want our doctors to do everything in their power to push that death as far as possible into the future, and the medical establishment has gotten remarkably good at accommodating our wishes. Aided by advances in sanitation and nutrition, people born in the United States in 2013 had a life expectancy of 78.8 years, and the ability of medical professionals to sustain life only figures to improve. ⁷ Against this backdrop, it is perhaps not surprising that when clinicians think about encouraging hope in their patients, it is the hope for a cure of their afflictions that is most often in view.

However, the idea that sustaining life should be the primary aim of medicine comes into question the moment we acknowledge that merely sustaining our biological existence is not what we most want from our medical professionals. While reflection on the manner in which we avail ourselves of medical services shows that living longer is certainly one of our goals, I think it also shows that we want medicine to help us engage in the sorts of activities that make our lives worth living in the first place—activities associated with interpersonal relationships, work, and intellectual and recreational pursuits. Runners seek the help of physicians to relieve their knee pain; people who love reading may be very concerned about the health of their eyes; and many of us fear conditions which undermine the cognitive capacities necessary for nearly all kinds of meaningful activity. None of these problems may be immediately life-threatening. But they certainly threaten our quality of life, and so we seek the assistance of health care providers in their mitigation.

If we hope for a good quality of life in these ways when we are not facing imminent death, then there is no obvious reason why such a goal should not be important when death is more clearly in view. In other words, when battling potentially fatal conditions, we might think that the most important goal is to cure them and thereby forestall death. But since we don’t merely want to forestall death when we are not battling potentially fatal conditions, it is unclear why forestalling death should be our only concern when we find ourselves in the midst of such a fight.

Indeed, empirical research suggests that forestalling death is not, in fact, what patients most want as they deal with potentially fatal medical conditions. As Atul Gawande has recently pointed out, “Surveys find that their top concerns include avoiding suffering, strengthening relationships with family and friends, being mentally aware, not being a burden on others, and achieving a sense that their life is complete.” ⁸ Vegetative life is not sufficient for accomplishing any of these goals (and, indeed, in some cases is not even necessary). One can certainly be alive and not be mentally aware. And strengthening relationships with family and friends requires more than the continuance of one’s biological existence; one also has to engage in various activities that serve the goal of strengthening interpersonal relations.

If, therefore, individuals want more than to forestall death when they are facing life-threatening conditions, it seems reasonable that they would to seek the assistance of the medical establishment in helping them achieve their goals. A cure for their condition may no longer be possible, but the tools of medicine may still be of tremendous value in making their remaining days as good as they can be. In the same way that the orthopedist may help the runner continue to pursue an activity she enjoys, a palliative care specialist may be able to help a cancer patient continue to read books she enjoys and discuss those books with friends by minimizing the sort of pain that can make concentrating on literature exceedingly difficult. The cancer may ultimately take her life, but caregivers can still help her engage in meaningful activities for as long as possible.

I think this pursuit for a meaningful quality of life opens important space for hope, even when patients are facing death. For if a certain quality of life is what patients most desire when battling serious illnesses, then they will also hope to achieve that quality of life. And if caregivers are able to help patients improve their quality of life in such circumstances, then it would seem correspondingly appropriate for them to invoke the language of hope in discussing various treatment options. For example, a physician might be clear in stating that a cure for a patient’s disease is no longer possible but that there is nevertheless reason to hope that the patient might still have some good days (or weeks or months) left—time in which they might engage in some of the activities they value.

These goals need not be grandiose, and what one person hopes to get out of their remaining time can differ quite markedly from what someone else wants, in addition to what they are willing to endure in order to get it. Gawande thus quotes Jack Block saying that “if I’m able to eat chocolate ice cream and watch football on TV, then I’m willing to stay alive. I’m willing to go through a lot of pain if I have a shot at that.” ⁹ The hope to engage in these modest activities was, in fact, enough to keep Block going and served as a template for how his physicians treated his spinal cord tumor and the complications that resulted from surgery. They aimed for a full cure of his condition, but when a cure proved to be unattainable, they turned their attention to improving his quality of life in line with his hopes.

In some ways, employing the language of hope when the possibility of a cure has receded into the background may be even more important than nurturing one’s hope for that cure. To begin with, evidence that remaining optimistic in the face of serious illness produces better clinical outcomes is actually somewhat mixed. ¹⁰ Despite what many people think, it may not really be the case that remaining hopeful for a cure makes it more likely that one will be cured. And given that fact, it is plausible that our focus in the wake of various diagnoses should always be on the quality of our remaining lives rather than a decisive cure of our ailments. In other words, if our prospects for a cure do not depend on our ability to sustain a hope to be cured, then perhaps we will be better off directing our attention more immediately to our quality of life in the wake of serious diagnoses.

I don’t mean to deny that we will almost always want to be cured of what ails us, and to that degree, we may not be able to avoid hoping for a cure entirely. Moreover, for some people, the pursuit of a cure may itself provide an important sense of meaning and purpose in their lives. In this way, nurturing the hope for a cure may also be helping to improve one’s quality of life. Nevertheless, many of the putative psychological benefits that arise from hoping for a cure would also seem to result from hoping for a meaningful quality of life: it can surely help to stave off depression, and given the toll that depression takes on the immune system, it could potentially have a number of other benefits as well. If our prospects for a cure are not improved by hoping for a cure, and if the benefits of hope can be secured by focusing on other sorts of goals, then perhaps the hope for a cure should not play as prominent a role in clinical contexts as it seems to play.

Moreover, there may be a further benefit in directing our hopes toward improving our quality of life—one which distinguishes it in interesting ways from the hope for a cure. Paradigmatically, we might hope for a cure largely because we want to be able to continue living as we have been living. That is, we want to avoid death or be rid of some condition so that we do not have to change our priorities and can instead go on living as we always have. To be sure, some people will be jarred by the possibility of death into reconsidering their priorities and realize that what previously mattered to them no longer does. But others will regard their affliction as nothing more than an inconvenient obstacle in the pursuit of their long-held goals. “Cure me, doc, so I can get back to business as usual.”

The hope for a meaningful quality of life, on the other hand, pressures us to give some attention to what we care about—to define in concrete terms what it means for us to live well so that our treatment might be organized around achieving that goal. Perhaps this kind of reflection will lead us to endorse the things we have cared about and the goals we have pursued. In these cases, getting back to business as usual may be exactly how to fill out our notion of meaningful activity. Others will revise their conceptions of meaningful activity, or be forced to do so in cases where certain possibilities are no longer available to them. If the avid runner can no longer run, she may have to revise her conception in line with her new limitations. However, no matter the outcome of this process, there seems to be an important value in directing our thoughts to such matters—what we most care about and what we are able to do without—and hoping for a good quality of life perhaps facilitates such reflection more readily than hoping for a cure.

While a focus on patients’ quality of life may also have policy implications for how to allocate scarce medical resources, that is not a point I wish to press here. John Harris has thus criticized the use of the Quality Adjusted Life Year (QALY) measure when it is invoked as a tool for determining “which group of patients to treat, or which conditions to give priority in the allocation of health care resources.” ¹¹ According to Harris, invoking QALY—which, roughly, “takes a year of healthy life expectancy to be worth one, but regards a year of unhealthy life expectancy as worth less than 1”—is immoral when deciding which patients to treat because it licenses doctors to value the lives of some individuals over others. ¹² As he puts it, even if everyone

would prefer to have, say, one year of healthy life rather than three years of severe discomfort … it does not follow that where the choice is between three years of discomfort for me or immediate death on the one hand, and one year of health for you, or immediate death on the other, that I am somehow committed to the judgment that you ought to be saved rather than me. ¹³

But even if Harris is right on this point, it doesn’t follow that focusing on the quality of the life that one has remaining is not a legitimate aim for particular patients or that clinicians should not work with patients to maximize the quality of life they have remaining. As Harris himself notes, “QALYs might be used to determine which of rival therapies to give to a particular patient or which procedure to use to treat a particular condition.” ¹⁴ And in these cases, “the one generating the most QALYs will be the better bet, both for the patient and for a society with scarce resources.” ¹⁵

As I see it, then, the benefit of shifting the focus of our hopes accrues primarily to individual patients. As Gawande thus frames the issue, we have “created a multitrillion-dollar edifice for dispensing the medical equivalent of lottery tickets—and have only the rudiments of a system to prepare patients for the near certainty that those tickets will not win.” ¹⁶ Most people don’t win the lottery, and individuals who plan their lives on the assumption that they will defy the overwhelming odds against them might be unprepared for the reality that most likely awaits them. Fostering hope is not the same as fostering blind optimism, and a health care infrastructure that encourages patients to continually chase the possibility of a cure no matter the likelihood that it will be successful does patients a disservice by setting them up for crushing disappointment. Directing our hopes to more tractable ends is thus an important way to better serve the interests of those who find themselves in seemingly hopeless circumstances.

Hope for a good death

No matter the course of a patient’s treatment, whether it has focused on the hope for a cure or the hope to improve one’s quality of life, there often comes a time when the reality of death will loom larger—a time when a cure is no longer possible and when it becomes increasingly difficult to engage in meaningful activities. While it may seem that there is no longer any place for hope in these circumstances, I want to suggest that there are nevertheless valuable ways for patients to turn their hopes toward death itself.

Drew Gilpin Faust has argued that soldiers in the American Civil War “were better prepared to die than to kill, for they lived in a culture that offered many lessons on how life should end.” ¹⁷ Central to this culture was the notion of the good death—a death which, as James McPherson characterizes it, “occurred at home in bed surrounded by family and friends who provided every comfort during the last hours of life.” ¹⁸ Though the ideal of the good death had explicitly Christian underpinnings—including, as it did, a readiness to “depart in peace and to meet again in the afterlife”—soldiers of a wide variety of religious persuasions were committed to the idea that there was an important art to dying. ¹⁹ Faust thus notes that “the shared crisis of battle yielded a common effort to make the notion of a Good Death available to all” regardless of theological heritage or denominational affiliation. ²⁰

The particular vision of the good death that was embraced in the 1860 s is not as important for my purposes as the fact that there was such an ideal. For though I suspect many people today are still attracted to the idea of dying surrounded by family and friends, the notion of a good death per se does not play a prominent role in our culture. As I have suggested, death is now regarded as the consummate evil—something to be avoided and fought against with all the resources at one’s disposal. Saying that one hopes for a good death sounds too much like saying that death is a good thing. Moreover, because death is now a highly medicalized process that often takes place in the sanitized confines of a hospital or nursing home, we are far less familiar with it than at perhaps any other moment in our history. ²¹ We know that people are dying behind those doors, and that we would like to avoid going through them if at all possible. But beyond knowing that dying is not something we want to do, we don’t think much about how we want the process of dying to go when it (inevitably) happens to us. Death is the ultimate failure, and there is something odd about giving too much attention to how we want our failures to go.

Fortunately, we don’t have to think that death is a good thing in order to think that there are better and worse ways that our deaths might play out. To begin with, most of us would prefer some causes of death over others. Given our druthers, we would probably rather die peacefully in our sleep from cardiac arrest than as the result of a violent machine accident on a factory floor. Some notion of the cause of our deaths may, therefore, be included in our conception of the good death, and hoping for some causes to prevail over others seems correspondingly appropriate.

However, in the sorts of clinical contexts where the significance of hope is most often discussed, the likely cause of a patient’s death has usually been identified: the affliction for which they are being treated and of which they might hope to be cured. In these cases, reflection on one’s own good death will primarily concern the manner in which an individual will navigate the time she has left. Does she want to fight her malady until the bitter end, even knowing that a meaningful cure is no longer possible? Or does she instead value a more resigned and palliative approach? Does she want to confront her fate stoically? Or does she think that a more emotionally effusive posture is appropriate—whether that emotion be sadness, anger, or even joy? Are there any particular things that she wants to do in the course of her death—rituals in which she wants to engage or places she wants to be—or people she wants to be around (or not be around)? Answering all of these questions will go some way to refining her conception of what it will mean to die well in her circumstances.

Given that most of us would agree that there are better and worse ways to die, it seems entirely appropriate for caregivers to discuss these matters with their patients. As long as we have a future left to live, we can think about how we want that future to go. Clinicians need not shrink from helping us think about how we want to approach our final moments or how we want our life stories to end. In the same way that expectant mothers often formulate birth plans that express the manner in which they want childbirth to unfold, perhaps it is worth formulating death plans that indicate how we want our final moments to unfold.

This parallel between birth and death plans is instructive, since both sorts of plans can only be provisional. Patients may want things to go a certain way, but unforeseen developments can often make the satisfaction of those desires exceedingly difficult. As Gawande puts it, very often “the arrow of events refuses to follow a steady course,” and the ends we desire may not always come to pass. ²² This uncertainty does not undermine the legitimacy of having desires regarding the end of life as much as it highlights the importance of using the language of hope in such contexts. By being explicit that certain ends are what they hope to accomplish, caregivers can also be explicit that they are unable to make guarantees.

I think that nurturing the hope to die well is important for at least two reasons. First, it gives patients something on which to focus even as they know the end is approaching. So much of our day-to-day life is organized around accomplishing things that I suspect it can be helpful to continue to live in a goal-directed way when one’s ability to pursue many other goals has been undermined. One might no longer be able to work toward the advancement of one’s career or even engage in a favorite hobby—the sorts of pursuits that give our lives a sense of purpose. But they can still hope to achieve one last goal: dying as well as possible.

There is, of course, the danger of becoming so wrapped up in achieving the goal of a good death that one pushes other things of value to the side. For example, it would not be good to neglect important relationships because one is maniacally focused on dying as well as possible. But given that many people would include relationships in their idea of a good death, it does not seem that having pursuing a good death is necessarily subject to this kind of distortion.

Indeed, this concern for relationships furnishes a second reason why the hope to die well may be important, namely, the significance that such a death has for those who survive. We may desire to write a good ending to our life stories, but it is others who must carry those endings with them after we are gone. ²³ Achieving a good death can thus give survivors a lasting memory that is at least marginally positive. We may not always be able to cure our afflictions. But we can pay our loved ones a valuable service by leaving them with a good death.

Invoking the importance of dying well to those who survive can, perhaps, furnish some guidance on how we conceive of a good death. Thus, a dying person’s loved ones should certainly take into consideration the desires that that person has concerning their own death. For example, if there are particular people that I do not want around me at my death, then it seems that people should take that into consideration when judging whether my death is a good one. And if my conception of a good death includes having my wits about me as much as possible, then that preference should carry some weight in others’ judgment of my death, even if it troubles them to see me in physical pain that could be alleviated with various medications. By the same token, the recognition that others will have to live with our deaths after we are gone may lead us to alter our hopes so that they fall more in line with their wishes.

I think that explicit reflection on what it means to die well also has the potential to focus the reflection of patients who are contemplating whether or not to pursue physician-assisted death (PAD). ²⁴ Individuals who feel that they can no longer engage in any sort of meaningful activity may be inclined to consider PAD as a way to pre-empt a meaningless existence. For some, it may therefore appear better to end their own lives than persist with a life of unacceptable quality. Others may regard PAD as an important aid in their pursuit of a good death. Perhaps the nature of their particular condition renders PAD the least bad among various bad ways for their lives to end.

I think these conclusions are plausible, as far as they go. There clearly are times when the quality of life a patient is able to obtain no longer allows meaningful activity. Physical and mental abilities may deteriorate to the point that individuals are simply unable to do any of the things they believe to make their lives worthwhile—even pursuits as mundane as watching football on TV. Facing these scenarios, it is hard to fault patients who see death as preferable to playing out the string of an existence they regard as meaningless.

However, other factors seem relevant to whether such a decision is appropriate. Is it possible to mitigate the patient’s pain and discomfort? What degree of mental awareness is the patient able to maintain? What sort of demands does the patient’s care place on others? How do the patient’s loved ones feel about the possible ways in which the end of her life might play out? And here, we are clearly asking questions about what it will mean for various patients to die well in their circumstances.

Enlisting the help of a physician in ending one’s life is one way to avoid some of the undesirable possibilities raised by these questions: pain and discomfort, living with a frightening lack of mental awareness, being a burden on family and friends. But in at least some cases, other options are available which can mitigate the direst of these scenarios without adding the psychological and procedural baggage often associated with PAD (whether or not that baggage is justified). Palliative care continues to improve and such measures are often able to help patients manage their pain and discomfort in ways that patients regard as acceptable. Taking this approach thus allows individuals to pursue a good death without having to end their own lives.

My point here is not to deny that the best death available in some circumstances might involve PAD. The medical possibilities available to some people may make PAD the best of a number of bad options. Nor do I want to overly moralize the issue. The contention is not that people who opt for PAD in the face of other possible course of action are thereby bad people or that they have necessarily done something morally wrong. My point is rather that just because PAD is one way of achieving certain aims in the face of death, it does not follow that it is the only way.

Conclusion: Virtue at the end

I have argued elsewhere that particular hopes are virtuous insofar as they are courageous, promote realistic beliefs about the world, and encourage solidarity with others. ²⁵ In conclusion, then, I want to very briefly suggest that such a view provides a framework for seeing how the sorts of hopes in the face of death that I have discussed here can be regarded as virtuous. As I've said, the decision to give up hope for a cure is often judged harshly, as though it illustrates a form of weakness in one's character. But if the view I have outlined above is plausible, then not only will giving up hope for a cure not warrant such criticism; exchanging that hope for others may be the best way for some patients to respond to their circumstances.

For example, acknowledging that a cure for one's affliction is no longer possible generally requires taking a serious look at one's predicament. Shifting focus to a meaningful quality of life thereby encourages a realistic assessment of the available options. By the same token, coming to grips with that reality is likely to elicit a certain amount of fear in most people such that persevering the face of that fear will constitute an admirable form of courage. And to the degree that evaluating what we care about draws us closer together with our family, friends, and community, pursuing a meaningful quality of life can likewise promote solidarity with others.

Similarly for the hope for a good death. Reflecting on the manner in which we want to approach death forces us to confront the reality of that death in a very explicit way---one which most of us will find at least marginally unsettling if not outright terrifying. Cultivating the hope for a good death will, therefore, not allow us to persist in the belief that death is not something we will have to face. Because facing that reality will likewise require facing our own fears about death, any sustained thought about how we want our deaths to unfold will require no small amount of courage. And since many people will want to be surrounded by loved ones in their final days, pursuing a good death has the chance to draw us together with others, even as we prepare to leave them.

The point here is not intended to be a moralistic one about which decisions are right or wrong in our final days. I do not want to replace the sometimes onerous demands of hoping for a cure with another set of equally guilt-inducing ideals. Rather, my aim has simply been to show that if hope is part of a flourishing human life, then there is room for individuals to exercise such hope even as their death approaches. And to the degree that clinicians and caregivers are able to foster these hopes, they have an important role to play in enabling patients to live well until the very end.