by Emrys Westacott
Imagine you are given the following choice:
Option A: You live 34,748 days. Your final four weeks are spent in and out of hospital, alternating between discomfort and semi-consciousness, entirely dependent on family members and health care providers for assistance with every basic function.
You die in hospital or in a nursing home. The cost of home care, hospital services, and medications over this period depletes your estate by thousands of dollars.
Option B: You live 34,720 days–that is, 28 days less. The 28 days you give up are those last four weeks just described. You die at home. The money you save helps put a grandchild (or great grandchild) through college.
To my mind, this is a no-brainer. Option B is clearly preferable. In both cases you live until you are 95, a good long life. Everything significant that you were able to enjoy or accomplish will have happened. All you miss out on if you choose Option B is a few days of humiliation, discomfort (occasionally rising to out-and-out pain), guilt about the burden you are imposing on others, and anxiety about how your final pitiable condition might affect the way you are remembered. I assume most people will share my view that B is the better option. So the question arises: Why do the final days of so many people resemble Option A rather than Option B?
This question was prompted by two very good bestselling books that I read during the recent holidays: Atul Gawande's Being Mortal, and Roz Chast's Can't we talk about something more pleasant? Gawande, a physician, addresses an increasingly important problem. Due to the tremendous progress made in medicine over the last century, dying is often a much more complex and protracted process than it used to be. Doctors today have the know-how and the technology to keep us alive a lot longer after we are stricken with illness or old age. Unfortunately, says Gawande, doctors, other care-providers, and family members, often unthinkingly opt for whatever will prolong life without considering sufficiently whether what is being prolonged is really worth living from the perspective of the person who has to live it.
Our worst nursing homes are luxury hotels compared to the old workhouses and almshouses where people used to spend their final days, but they are nevertheless dreaded. Innovative assisted living arrangements make an honest attempt to eliminate some of most objectionable aspects of nursing homes, particularly the lack of independence granted to the residents. But all the same, loss of autonomy, and the blighting of even small pleasures by continual discomfort, seems to be the fate that awaits many of us if we take our time shuffling off our mortal coil.
In Can't we talk about something more pleasant? Roz Chast, the well-known New Yorker cartoonist, documents in graphic form the final stages of her parents' lives. It's a grim, funny, bitter, honest, entertaining book. Well into their nineties, her parents move into a “nice and clean and sickeningly expensive” assisted living instiution which her father calls a “hellhole.” After her father falls and breaks his hip he is transferred to a “pretty depressing” nursing home, where he spends three weeks depressed, disoriented, developing awful bed sores, and racking up more bills. In July of his final year he says he wants to “pack it in.” His bed sores are so deep that morphine is the only thing keeping him from screaming in pain. He makes regular trips to the hospital to have dead tissue removed—an agonizing procedure. Finally, in mid-October he dies.
Chast's mother, Elizabeth, becomes depressed following her husband's death. (They had been married for 69 years.) She revives a little, though not for long, when she bonds with Goodie, her round-the-clock nurse who helps her with dressing, feeding, and toilet functions. Goodie is wonderful, but the high cost of private nursing is over and above the cost of the assisted living home, and is paid for out of her mother's savings. Gradually Elizabeth's mind starts to crumble. In April the family celebrate her ninety-seventh birthday: she wonder's if she's turning 100. In the month that follow she exists in what Chast describes as a state of “suspended animation,” sleeping most of the time, completely incontinent, doing nothing when awake except lying in bed–and burning through her savings. In July she starts receiving hospice care in addition to the care Goodie provides. By the end of August she hardly ever speaks or opens her eyes. She dies at the end of September.
A refreshing feature of Chast's book is that she's not afraid to voice her concerns about money–not just her worry that her parents' savings will give out, but also her self-interested awareness that the dollars spent on care will be dollars she won't be inheriting. Gawande prefers not to discuss money matters head on, which I think is a weakness of his book, although it is a failing that seems to be common among physicians. But the final pages of Being Mortal connect up with Chast's book since Gawande there describes in poignant detail the end of his own father's life. Suffering from cancer, with a tumor at the top of his spinal column, his father endures pain and the usual frustrations and humiliations that visit anyone whose body starts to fail them. Gawande's father is fortunate, though. His mind remains sharp; he stays engaged with the world; his pain is controlled with medication; and until the final few days the significant pleasures he is capable of experiencing outweigh his sufferings.
To return to my question: Why do so many people seem to end up dying just the way they say they don't want to? Why not choose an induced death in advance of those ghastly final few days or weeks, or in some cases months?
Obviously, cases differ, so there will be various factors at work depending on the circumstances. Some people have religious beliefs that forbid suicide. Usually the rationale for this taboo is that choosing when one dies means “playing God”, for God alone has the right to take away life. Some have secular objections to suicide, seeing it as some sort of moral failure. Some are unable to secure the means to end their life. They may have gone past the point where they are mentally or physicaly capable of doing what needs to be done. If they are capable, they may know of no doctor willing to help, nor have anyone close to them who they can ask for assistance. This is more likely to be the case where assisted suicide is illegal, although the illegality of assisted suicide is not usually an insurmountable obstacle to ending one's life.
But there remain many who have no principled objection to suicide, who have it within their power to provide themselves with the means, but who nevertheless suffer and linger through to the bitter end. Why?
If the choice between Option A and Option B presented above seems like a no-brainer that may be because it is presented in objective terms, as if we have a perspective beyond life from which we are able to survey and compare the two options. But of course that isn't the point of view we have as we approach the end of life. We don't know exactly how soon or how quickly we will lose our independence; we don't know how much pain we will suffer; perhaps most significantly, we may still entertain hope that things will improve, or at least not get any worse. Gawande's book brings this point out forcefully: when hope and evidence arm wrestle, hope usually comes out on top.
Nor should we underestimate the simple will to live. A New York Times article last year by Nina Bernstein told a horror story involving a 91 year old man who, in spite of Herculean efforts by his daughter, spent a desperately miserable final year being shunted between hospitals and nursing homes. Yet he apparently never lost the desire to live, and just a few weeks before he died thanked his daughter for helping to keep him alive.
Finally, there are mighty institutional forces and financial interests that push people into the sort of care that prolongs life without much concern for whether the life being sustained is worth living. Medical personal often have an ingrained preference for whatever sustains life: even Gawande, a physician who clearly has reflected deeply on these matters, reports occasionally finding this default attitude within himself. And of course doctors, hospitals, nursing homes, and pharmaceutical companies, can all make a lot of money keeping people breathing.
For all that, I still I find it surprising that more people don't choose to kill themselves when they get close to the very end. I'm not talking here about avoiding entirely the inevitable decline of one's faculties as one advances into old age, which is what Ezekiel Emanuel has in mind in his provocative article “Why I Hope to Die at 75,” published last year in The Atlantic. Emanuel states his case lucidly:
“living too long . . . renders many of us, if not disabled, then faltering and declining, a state that may not be worse than death but is nonetheless deprived. It robs us of our creativity and ability to contribute to work, society, the world. It transforms how people experience us, relate to us, and, most important, remember us. We are no longer remembered as vibrant and engaged but as feeble, ineffectual, even pathetic.”
But I can understand why someone might not share Emanuel's attitude. At 75 life may still hold the prospect of many important pleasures: time spent with children and grandchildren and perhaps great grandchildren, witnessing their growth and accomplishments, study, travel, the arts, and the simple pleasures of friendship and domestic life.
What surprises me is that more people don't choose to avoid the final unpleasantness of pain, incapacity, and indignity. Even Emanuel says he won't induce his own death; he opposes legalizing euthanasia or physician-assisted suicide. His article simply explains why after 75 he will accept only palliative care, eschewing all curative treatments. His rejection of suicide is surprising since it seems that if he sticks to his policy there is still quite a good chance that he might live “too long” by his own lights, leaving behind just the sort of memories of him that he hopes not to bequeath.
I predict, though, that in the years to come increasing numbers of people will choose to induce death as they approach the very end. Indeed, I believe we are currently in the early stages of a sea change in attitudes, rather like the one that has seen the prejudice against homosexuality diminish to the point where gay marriage is now legal in many countries and most of the US–a reality that virtually no-one would have predicted thirty years ago.
Right now assisted suicide is legal in Switzerland, Germany, Japan, Colombia, and Albania, and in four US states: Montana, and New Mexico, Oregon, and Vermont. In modernized countries the trend is clearly towards expanding this right. The philosophical arguments in favor of granting the right to an induced death are powerful, as are most arguments that rest on John Stuart Mill's harm principle–the rule that individuals should be allowed to do what they want as long as their actions don't harm others. The religious objections will weaken as generations for whom religion is less important enter old age. The traditional stigma attached to suicide will also lessen as we all become familiar with examples of people who, both for their own sake and for the sake of those they love, make the rational decision to shorten by a little a life that is clearly coming to an end.
A 2011 BBC documentary, Terry Pratchett: Choosing to Die, showed Peter Smedley, a retired hotelier, ending his life by drinking a barbiturate in the company of his wife, Pratchett, and two staff from Dignitas, the Swiss organization that helps terminally ill people to die in circumstances of their own choosing. You can see parts of it on Youtube. Needless to say, the documentary was controversial, and of the thousands of comments posted to Youtube, many are critical of both Smedley and Dignitas. Just why the spectacle of assisted suicide arouses such animus is itself an interesting question. Compared to the drawn-out process described by Chast, Peter Smedley's end appears as easy and dignified as death can be.
Suicide has often been described as cowardly or selfish. But those who choose to bring an already complete life to a dignified close so that they avoid a short period of pointless pain and humiliation, cease to be a burden on others (including the medical system), and materially benefit their loved ones, should be applauded for their courage and selflessness. They are an example to us all.
 Nina Bernstein, “Fighting to honor a father's last wish: to die at home” [http://www.nytimes.com/2014/09/26/nyregion/family-fights-health-care-system-for-simple-request-to-die-at-home.html]