Friday, November 7, 2014
Public conversations about death have always been crowd-pullers. In the last few weeks though, the tone and tenor of these conversations have changed
Death, it seems, is ‘trending’ right now. Perhaps it is the times we live in, bereft of irony and filled only with the certainty of entitlement, one that makes the application of a freshly-minted verb to a timeless eventuality not just acceptable, but even appropriate. Public conversations about death have always been crowd-pullers, but in the last couple of decades, eager as we have been to live on, consume on and get a bucket list of activities and achievements accomplished, they have largely been limited to who and how. These reports — of suicidal IIT students or adventure seekers swept away by a suddenly swollen river — have mainly been consumed with morbid fascination, fuelled only by the relief that it happened to someone else, when it could so easily have been oneself.
Suddenly, in the last few weeks though, the tone and tenor of public conversations about death have changed.
The first jolt was when it popped up on our Facebook walls. It seemed jarring that in an ecosystem built around preserving the photo of every moment of our existence and every random thought that pops up in our head, a 29-year-old was talking about death. If you have been a user of the internet in the last few weeks, it is likely that you too stumbled upon the story of Brittany Maynard. At 29, Maynard is too young to die. She is also, as some commentators have pointed out, too pretty to die.
Both of which are the reasons why her story has gone viral. In January this year, Maynard’s headaches were diagnosed as a malignant brain tumour. She was given five to 10 years to live. But in April, further tests confirmed that she was at stage four of the cancer and that her health was likely to deteriorate drastically. She had only about six months of quality life ahead of her.
Maynard immediately took control of her death. She moved to the state of Oregon, where she is allowed to legally choose her death; established a new home; got a new driving licence as well as access to medication that would help her die. Then she went about trying to finish as many things on her bucket list as she could. All the while, she continues to campaign for more states to pass laws that would allow the terminally ill to die with dignity. If she sticks to her plan, then today, November 1, 2014, would be her last.
Shocking as Maynard’s decision is, determining the point at which life becomes untenable is something the medical community is just about starting to think over. In his latest book, Being Mortal, Atul Gawande, who is a general and endocrine surgeon in Boston, US, says that the medical profession’s focus on keeping patients alive at any cost is counterintuitive. “I learned about a lot of things in medical school,” Gawande starts his book, “but mortality wasn’t one of them. Our textbooks had almost nothing on ageing or frailty or dying. How the process unfolds, how people experience the end of their lives, and how it affects those around them seemed beside the point. The way we saw it, the way our professors saw it, the purpose of medical schooling was to teach how to save lives, not how to tend to their demise.”
Yet, demise is inevitable. And even though we are the only species to be aware of this inevitability, we are often the ones least prepared to deal with it. Through case studies, research and anecdotes, Gawande proposes a radically different approach to looking at death — by assessing how one wants to live. Patients must ask themselves what is important to them — the ability to be mobile, or use the bathrooms themselves, to be conscious, to be able to talk, to attend a wedding over the weekend, to see a child who is on his way back from a place far away — and then decide if the risks of the medical procedure are worth giving up any of these goals.
It isn’t, of course, as easy as it sounds. Ageing itself is a slow process of losing control over things that matter. As more and more decisions of what is important to you are handed over to other people — spouses, children — it becomes increasingly hard to decide on a goal, much less prioritise it. The process of caring for geriatrics is intrinsically one that infantilises them. Gawande sits in with a doctor at the geriatrics clinic of the hospital he works in. After going through the list of problems and the medications the patient was taking, the doctor embarks on a close examination of the feet of the patient. The biggest risk that the elderly face is that of falling. In the US, of the 350,000 people who fall and break their hip every year, 40 per cent end up in a nursing home and 20 per cent are never able to walk again. Even if a patient seems fine for their age and the number of medical conditions they have, the feet often tell a different story. The patient who was examined while Gawande was sitting in, came in well dressed and looked like she maintained herself very well. Yet, her feet were swollen. The toenails were unclipped. There were sores between her toes and the balls of the feet had thick, rounded calluses. The most significant advice the doctor had for her was to direct her to a podiatrist once a month, so that her feet were better taken care of.
It isn’t just feet care. Like in babies, even something as basic and essential as swallowing is challenging for the elderly. Over time, the lordosis of the spine tips the head forward. In terms of the angle of the throat, looking ahead is akin to looking up. Choking is common. Older people have to be reminded to look down while eating, so that food can pass through the throat. It is then normal for family members and caregivers to assume that a person who isn’t capable of eating on her own is incapable of deciding on what kind of medical treatment is appropriate for them.
Home and away
Caring for the elderly is a particularly complex problem in the Indian context. Traditionally, the joint family system provided an in-house support system, with children, their spouses, and grandchildren pitching in — some happily and voluntarily, some grudgingly. As urban and semi-urban India moves rapidly into a system of nuclear families, caring for the elderly becomes an acute problem. They are often dragged across geographically and forcibly introduced to new and alien environments as it isn’t professionally possible to always insist on staying close to ageing parents. Depression is common among these geriatrics, as is a sense of uselessness and helplessness. The real estate market is the first to recognise senior citizens as a credible customer base. Townships fitted with medical and housekeeping help are increasingly coming up in suburban India. As large numbers of young Indians seek work outside the country, these become a relatively safe option for their parents.
While the number of assisted-living facilities is growing, the immense societal judgment of ‘abandoning one’s parents’ prevents the vast majority from opting for them. So people continue to care for the elderly even though they don’t often wish to. It isn’t surprising then that a survey by HelpAge India reported in June this year that 50 per cent of the elderly were abused in their home. This is up from 23 per cent last year. The survey covered 1,200 elderly in Tier I and Tier II Indian cities. Among Tier I cities, Bangalore reported 75 per cent of polled elders facing abuse, while Delhi reported 22 per cent. Verbal abuse (41 per cent), disrespect (33 per cent) and neglect (29 per cent) were ranked the most common types of abuse. Sons and daughters-in-law were the abusers and most elders said they suffered this because of emotional and economic dependence on the abuser. Despite the fact that Indians laud ‘family values’ in public, truth is in a large number of homes, the elderly are stripped of love, dignity and a desire to live.
Reason to live
In the US, hospice care is an increasingly attractive option, where patients are made comfortable, their pain is managed, but no new course of treatment is offered. On paper, hospice care, and assisted-living facilities for the aged, may seem like a sort of easing into death, a way of candy flossing the morbid. But it doesn’t have to be so. If done right, it is a way of finding new things to live for. Being Mortal tells the story of Bill Thomas, a 31-year-old physician who took charge of Chase Memorial Nursing home, an assisted-living facility with 80 disabled and elderly residents. The home was running well, but Thomas saw despair in every room. In a particularly inspired experiment, he managed to introduce two dogs, four cats and one hundred birds into the facility. It wasn’t without problems. But when the teething troubles were over, the results were evident. It changed the place around, bringing in birdsong and life to the residents’ lives.
Researchers studied the effects of this programme over two years, comparing a variety of measures for Chase’s residents with those of residents at a nearby nursing home. The study found that the number of prescriptions required in Chase fell to half that of the control nursing home. Psychotropic drugs for agitation decreased in particular. The total drug costs fell to just 38 per cent of the comparison facility. Death fell 15 per cent. The study couldn’t say why. But Thomas thought he could — “I believe that the difference in death rates can be traced to the fundamental human need for a reason to live.”
Part of life
What then is a reason to live? When all ambition is exhausted and there is no energy to create more, perhaps that is the point when finding a reason to live becomes difficult. In a charming essay in The Guardian last month, legendary editor Diana Athill says the idea of death has never been alarming. The process of death is another matter. “Death is the inevitable end of an individual object’s existence — I don’t say “end of life” because it is a part of life. Everything begins, develops — if animal or vegetable, breeds — then fades away: everything, not just humans, animals, plants, but things which seem to us eternal, such as rocks. Mountains wear down from jagged peaks to flatness. Even planets decay. That natural process is death.”
In another much-shared essay in The Atlantic in September, Ezekiel Emanuel, the director of the Clinical Bioethics Department at the National Institutes of Health, US, wrote why he wouldn’t want to live beyond 75. He wasn’t advocating euthanasia, merely listing the reasons why a life beyond that age holds no charm. It is the tail end of a productive life, creativity diminishes, activities are harder and less joyful and chances of active contribution to society are significantly reduced. “Once I have lived to 75, my approach to my healthcare will completely change. I won’t actively end my life. But I won’t try to prolong it, either. Today, when the doctor recommends a test or treatment, especially one that will extend our lives, it becomes incumbent upon us to give a good reason why we don’t want it. The momentum of medicine and family means we will almost invariably get it,” Emanuel writes.
Although all of Emanuel’s arguments are well constructed and he provides data to prove most of his hypotheses, the comments on the essay are almost entirely written in a tone of outrage. Everyone, it seems, knows someone who is 80 or 90 and just as productive and creative as they have always been. These people may well exist. But their numbers are small, which is perhaps why the commentators themselves find them exceptional.
The arguments that detail the outrage though are more often spiritual than scientific. But then it is inevitable that people hide from death behind god. Despite centuries of medical advances and scientific progress, death remains, even today, the ultimate mystery. It can be viewed as a chasm to fall through, a lonely and frightening journey, or it could be viewed simply, as the end. Haemorrhaging after a miscarriage, Athill once nearly died. She writes, “I was not in the least alarmed as I dimly wondered if I had the strength left to think some suitable Last Thought, concluded that I hadn’t, and said to myself the words: ‘Oh well, if I die I die.’ I was sure, then, that nothingness was just that.”
(This article was published on October 31, 2014)