Posted by: cochinblogger | July 18, 2015

How to Die

old man.jpg

I know nothing about you, and I’m not an astrologer; nevertheless, I can tell you a few things about your future. You will either die young, or you will grow old and die. If you live to a ripe enough old age, even if you escape a serious disease, you will slowly lose the bodily and mental functions you once took for granted, until you will eventually need assistance to get dressed, eat, move around, go to the bathroom, etc. If you have to combat a serious disease in addition to old age, your problems will, of course, be compounded. Please don’t think I’m picking on you; everything I’ve said about you naturally applies to me as well.

Old age, disease, death are subjects we instinctively avoid. However, as Atul Gawande shows in his latest book, Being Mortal, that avoidance is a serious mistake. Why? Because it is better to think through problems before they arise than have life-and-death decisions thrust upon us when a critical, and perhaps incapacitating, illness is sprung upon us. In the worst case, we may not even be conscious, or may drift into a coma, in which case decisions about our fate that we will be powerless to veto will be made by well-intentioned others (or even not-so-well-intentioned others).

In the book, a daughter asks her father, who is faced with a dangerous operation that could lead to paralysis: “What is the minimum quality of life you can accept in terms of functional impairment?” He says if he can watch football on TV and eat chocolate ice cream, that’d be a life worth living, a surprisingly philistine answer, coming as it does from an academic. His daughter is surprised; her father, an emeritus professor, a towering intellectual, satisfied with watching football on TV and chocolate ice cream?

As it happened, after the operation, bleeding began in the spinal cord, and the surgeon told her daughter he would need to go in again to save her father’s life, but the risk of severe disability was high, he warned. The daughter remembered what her father had told her and asked the surgeon if in the worst case, her father would be able to watch football on TV and eat chocolate ice cream. Yes, he said. The daughter asked the surgeon to go ahead.

As it happened, despite his post-surgery handicaps, her father lived on productively for another ten years, even writing a couple of books and a dozen scientific papers on his subject of expertise before he died. If the daughter had not asked her father the hard question — what is the minimum you would accept — she would have vetoed the follow-up operation on the grounds that life with a severe disability would not be worth living for her professor father — and her father would have died within a few months. This is an anecdote from the book that has stuck in my mind.

It is a question we should be asking ourselves: What is the minimum quality of life we would accept as we grow older and become increasingly more feeble in body and mind? The answer should be shared with those who would likely be charged with taking decisions on our behalf when we are no longer able to. There are many similar questions to be considered: Who should I designate as the decision maker if I were to go into a coma? Would I want the doctors to prolong my life come what may? At what point should I ask for treatment to stop? When do I stop fighting and accept the inevitable? Should I be looking at old age homes, retirement homes, or assisted living facilities to prepare for the time when I will no longer be able to live independently? Should I consider hospice care at any stage? Would I prefer to die at home or in a hospital? As you can see, there is much to think about, and difficult as it is, this kind of thinking is best done in advance — not when the crisis is upon us. But we turn away from distasteful subjects like old age, disease, and death; we’ll cross those bridges when we come to them, right? Wrong.

Gawande shows that even those who are most often charged with solving the problems of the elderly at a professional level — the doctors — avoid the burning issues of that stage of life. This is a pity because doctors are the people who are most familiar with death and the process of dying, whereas their patients are handicapped in that respect:

People die only once. They have no experience to draw on. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come — and escape a warehoused oblivion that few really want.

Unfortunately, few doctors are willing to have these hard discussions. Their training has ingrained in them the notion that death is the enemy, an outome to be deferred as long as possible. The idea of an accommodation with death goes against their grain. The medical problems of the elderly require a different approach on the part of doctors — but again, their training hasn’t prepared them for this. It’s easier for them to stick to their standard protocols, and the result is, more often than not, havoc in the lives of their elderly patients. Here is how Gawande puts it:

Those of us in medicine don’t help, for we often regard the patient on the downhill [an elderly patient with the typical afflictions of that stage of life] as uninteresting unless he or she has a discrete problem we can fix. … We’re good at addressing specific, individual problems: colon cancer, high blood pressure, arthritic knees. Give us a disease, and we can do something about it. But give us an elderly woman with high blood pressure, arthritic knees, and various other ailments besides — an elderly woman at risk of losing the life she enjoys — and we hardly know what to do and often only make matters worse.

Wait a minute, isn’t there a branch of medicine, geriatrics, that deals with the medical problems of the elderly? Indeed there is. Unfortunately, we are in the process of strangling geriatrics in its cradle. Over to Gawande.

Several years ago, researchers at the University of Minnesota identified 568 men and women over the age of seventy who were living independently but were at high risk of becoming disabled because of chronic health problems, recent illness, or cognitive changes. With their permission, researchers randomly assigned half of them to see a team of geriatric nurses and doctors — a team dedicated to the art and science of managing old age. The others were asked to see their usual physician, who was notified of their high-risk status. Within eighteen months, 10 percent of the patients in both groups had died. But the patients who had seen a geriatric team were a quarter less likely to become disabled and half as likely to develop depression. They were 40 percent less likely to require home health services.

These were stunning results. If scientists came up with a device — call it an automatic defrailer — that wouldn’t extend your life but would slash the likelihood you’d end up in a nursing home or [be] miserable with depression, we’d be clamoring for it. We wouldn’t care if doctors had to open up your chest and plug the thing into your heart. We’d have pink-ribbon campaigns to get one for every person over seventy-five. Congress would be holding hearings demanding to know why forty-year-olds shouldn’t get them installed. Medical students would be jockeying to become defrailulation specialists, and Wall Street would be bidding up company stock prices.

Instead, it was just geriatrics. The geriatric team weren’t doing lung biopsies or back surgery or insertion of automatic defrailers. What they did was to simplify medications. They saw that arthritis was controlled. They made sure that toenails were trimmed and meals were square. They looked for worrisome signs of isolation and had a social worker check that the patient’s home was safe.

How do we reward this kind of work? Chad Boult, the geriatrician who was the lead investigator of the University of Minnesota study, can tell you. A few months after he published the results, demonstrating how much better people’s lives were with specialized geriatric care, the university closed the division of geriatrics.

“The university said that it simply could not sustain the financial losses,” Boult said from Baltimore, where he had moved to join John Hopkins Bloomberg School of Public Health. On average, in Boult’s study, the geriatric services cost the hospital $1,350 more per person than the savings they produced, and Medicare, the insurer for the elderly, does not cover that cost. It’s a strange double standard. No one insists that a $25,000 pacemaker or a coronary-artery stent save money for insurers. It just has to maybe do people some good. Meanwhile, the twenty-plus members of the proven geriatrics team at the University of Minnesota had to find new jobs. Scores of medical centers across the country have shrunk or closed their geriatrics units.

Doesn’t this make your blood boil? Mine did. This is a paradoxical situation, with geriatrics departments being shut down even as the population of the elderly is increasing worldwide owing to the rising standards of health care! Gawande’s examples are from the United States, true, but I wonder if it’s any different anywhere in the world, including Europe. I wonder if any hospital in Cochin, for example, even has a department of geriatrics. Part of the problem, I think, is that geriatrics as a branch of medicine repels most doctors, both from the point of view of money and clinical interest. Gawande the doctor explains:

What geriatricians do — bolster our resilience in old age, our capacity to weather what comes — is both difficult and unappealingly limited. It requires attention to the body and its alterations. It requires vigilance over nutrition, medications, and living situations. And it requires each of us to contemplate the unfixables in our life, the decline we will unavoidably face, in order to make the small changes necessary to reshape it. When the prevailing fantasy is that we can be ageless, the geriatrician’s uncomfortable demand is that we accept we are not.

In other words, geriatrics is not sexy. Doctors strain at the leash, panting for “discrete problems” they can fix; they seek to use their specialized skills and hone marketable skills. Geriatrics is about maintenance. There’s no money in it, no glamor in it. Which doctor worth his salt would specialize in geriatrics? And, as Gawande points out, we, the lay public, are culpable because we do not value geriatrics.

We want doctors who promise to fix things. But geriatricians? Who clamors for geriatricians?

Supply is a function of demand, and we do not demand geriatrics, we do not clamor for geriatric services, in large part, because of human nature: we avert our eyes from unpleasant subjects like age-related ailments, illness, and death. Which brings me back to to where I started. It’s a vicious circle. No clamor, no glamor. No glamor, no clamor.

mortal cover.jpg

Being Mortal opens with a vivid portrait of Gawande’s grandfather, a self-made farmer who lived an independent life to a ripe old age in the bosom of a typical Indian joint family consisting of his sons and their families. Running through the book are the stories, some heart-warming and some tragic, of several elderly patients and their medical dilemmas, and how they and their families coped with them. One of those elderly patients is Gawande’s father, who was diagnosed with a cancer in his spine, and his story gives this book a poignant personal edge. The book ends with Gawande on a boat in the Ganga, sprinkling the ashes of his father in the sacred river to the accompaniment of chants by the priest.

At the heart of this book is an admission — remarkably brave in that it comes from a doctor — that we laymen instinctively understand: medical procedures often make matters worse. It’s sometimes better to not intervene at all. Doctors are trained to offer procedures; however, all too often, they have not thought through the possible outcomes, from the point of view of the patient’s expectations regarding his quality of life after the procedure. So, that is one dilemma an elderly patient (and not just an elderly patient; this aspect of modern medicine is age agnostic) faces: to go ahead with a proffered procedure or to decline it. A more complex dilemma is when more than one procedure is offered. And compounding the problem is the new trend in medicine: doctors do not tell you what to do; instead, they offer you a menu of options and leave it to you to choose. There is an incredible scene in the book where Gawande’s father, his mother, and Gawande himself (doctors all!) are discussing treatment options for the spinal tumor with an oncologist. Gawande admits that a point was reached where they just could not follow the oncologist: the array of treatments, side effects, drugs, and surgeries on offer was bewildering. If doctors themselves get confused about medical choices, imagine the plight of the poor layman.

One option for the elderly in dire health straits is the hospice. In the United States, a doctor has to certify that the patient has a life expectancy of less than six months. Patients have to sign a form stating that they understand their disease is terminal and that treatment for the disease would be halted. Gawande says the hospice is not very popular because of its association with terminal illness. I have seen this reluctance to use hospices for myself here in Cochin. I’ve read that Kerala has excellent palliative care centers, but I do not know of any relative who has used the service. The norm is to spend the last days in a hospital, often in an ICU. The hospice is tainted with the stigma of impending death and so doesn’t have many takers — and yet, as Gawande, shows, it is a serious option for those who wish to spend their last months/days at home in relative comfort and meet death on their own terms. But the prerequisite is the acceptance by the patient and his or her loved ones that he or she is at death’s door.

The examples that Gawande gives of the way hospices in the United States work are impressive. Trained nurses come home and examine the patient’s environment, lifestyle, medications, and general condition. They then make changes to make the the patient more comfortable and lessen the chances of injuries due to, for example, falls. An emergency nurse is on call around the clock, and an on-site nurse is stationed if necessary. All the hospice stories in the book are unqualified successes; Gawande’s father too chose hospice support, and so Gawande could see how it worked first hand. His respect for hospices and the amazing professionals who work in them shines brightly throughout the book. But this knowledge of the effectiveness of hospice care came to him gradually. Eve he, a doctor, had to deliberately set out to learn about hospices. It surprises me that the average doctor knows so little about what hospice care entails. One day, Gawande accompanies a hospice nurse from his hospital on a house visit. I give an excerpt from his description of the visit.

Outside, I confessed that I was confused by what Creed was doing. A lot of it seemed to be about extending Cox’s life. Wasn’t the goal of hospice to let nature take its course?

“That’s not the goal,” Creed said. The difference between standard medical care and hospice is not the difference between treating and doing nothing, she explained. The difference was in your priorities. In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now — by performing surgery, providing chemotherapy, putting you in intensive care — for the chance of gaining time later. Hospice deploys nurses, doctors, and social workers to help people with a fatal illness have the fullest possible lives right now. That means focusing on objectives like freedom from pain and discomfort, or maintaining mental awareness for as long as possible, or getting out with family once in a while. Hospice and palliative-care specialists aren’t much concerned about whether that makes people’s lives longer or shorter.

Like many people, I had believed that hospice care hastens death, because patients forgo hospital treatments and are allowed high-dose narcotics to combat pain. But studies suggest otherwise. In one, researchers followed 4,493 Medicare patients with either terminal cancer or congestive heart failure. They found no difference in survival time between hospice and non-hospice patients with breast cancer, prostate cancer, and colon cancer. Curiously, hospice care seemed to extend survival for some patients; those with pancreatic cancer gained an average of three weeks, those with lung cancer gained six weeks, and those with congestive heart failure gained three months. The lesson seems almost Zen: you live longer only when you stop trying to live longer. When Cox was transferred to hospice care, her doctors thought that she wouldn’t live much longer than a few weeks. With the supportive hospice therapy she received, she had already lived for a year.

Another topic that is dealt with at some length in the book is assisted living services (these range from glorified old age homes to nursing homes to hostels to gated communities to supervised living in apartments) for the elderly who are no longer able to live independently and who have no family support to fall back on. A diverse range of such support facilities is described in the book. However professional the support provided to the elderly who live in such establishments, keeping them happy is a formidable challenge. Nobody likes to be uprooted from their own homes and move into a regimented environment where they cede control over their lives to strangers, however well-meaning they may be. Gawande met Karen Brown Wilson, assisted living pioneer, who explained why assisted living is harder than it may seem:

First, to genuinely help people with living “is harder to do than talk about” and it’s difficult to make caregivers think about what it really entails. She gave the example of helping a person dress. Ideally, you let a person do what they can themselves, thus maintaining their capabilities and sense of independence. But, she said, “Dressing somebody is easier than letting them dress themselves. It takes less time. It’s less aggravation.” So unless supporting people’s capabilities is made a priority, the staff ends up dressing people like they’re rag dolls. Gradually, that’s how everything begins to go. The tasks come to matter more than the people.

In one experiment, the pioneering director of one such facility introduced dogs, cats, and birds into the premises. He was delighted to see that even the most withdrawn and passive inmate came alive and responded to the pets, with many taking an active part in their care. But such creative out-of-the-box thinking is rare. Naturally, very few wish to leave the comfort and security of their own homes and move into a community living space, because they know that’ll spell the end of whatever little autonomy they enjoy. But if they can no longer manage by themselves and no family member is willing to take them in, what is the alternative? Gawande here mentions that it is daughters rather than sons who help their parents in their twilight years. One such daughter in the book is Shelley, who looks after her father, Lou, who can no longer live alone. So she moves him into her house, though there’s barely enough space for her own family, comprising her husband and a son. And to add to the stress, they’re not very well off.

This arrangement, however, begins to fall apart as Lou becomes more and more dependent on Shelley for day-to-day tasks. Sometimes he needs to be taken to the hospital. And Shelley has a full-time job to hold down. Reluctantly, she tells her father she’s going to look for a suitable assisted living facility for him. She can no longer look after him at home. She can see in his eyes the unspoken plea: “Give up your job and look after me.” She breaks down crying and says she can’t. It’s a touching story, and there are many more life stories like this in the book. I remember one wife who looked after her bedridden husband herself. She didn’t want a nurse; she learned everything she need to know from the hospice nurse. Another cancer patient was a fighter and was encouraged by her family to fight almost until the end; in spite of one chemotherapy treatment after the other failing, their eyes were on the next fix to try, until her system could take it no more. She was so weakened by the aggressive treatments that she could hardly breathe, and she and her family had to accept that nothing more could be done. But … the unspoken thought is that an earlier acceptance of the inevitable and transition to hospice care would have almost cut out unnecessary suffering and made for a relatively peaceful end.

mortal back.jpg

Let me step away from the content of the book for a moment now. Did you notice the moth on the cover of the book (see the previous photo)? It’s there on the back cover as well. I hardly gave it a thought first when I began reading the book, but photographing butterflies, moths, dragonflies, etc., is one of my hobbies, and it wasn’t long before I took a closer look at the moth on the cover. It was, of course, a large moth; that much I knew. Why was it on the cover? It’s a pretty moth, and so I thought the reason was ornamental: eye candy. One day I was watching a wildlife TV program on a naturalist in China. He trapped an Atlas moth, the largest moth in the world, and described some of its characteristics. I hadn’t known that the Atlas moth didn’t have a mouth; it’s lifespan was about two weeks, and it existed only to reproduce.

It was then that the symbolism of the moth on the cover dawned on me: moths are proverbially short-lived, which underscores the “Mortal” in the title. I then, of course, had to identify the moth on the cover. I just typed “large moths” in Google and looked at the images. It was a name in a Wikipedia article that triggered a distant memory of having seen the moth before: Luna moth. I clicked on the link, and sure enough, there it was! It’s the Luna moth, which belongs to the same family as the Atlas moth. It lives just for a week and has no mouth. This is the logic of mortality carried out to its remorseless conclusion. A moth without a mouth. Or maybe we have got it wrong, and the moth is merely a mouth without the “u.” πŸ™‚

In a book about chess grandmasters from the erstwhile Soviet Union called Russian Silhouettes, author Gennady Sosonko, a grandmaster himself who fled the Soviet Union for Holland in the early 1970s, quotes a sentence written by the former world champion Mikhail Botvinnik, who died in 1995 at the age of 84: “In recent years I have understood what old age is. It is when your friends depart, new ones do not appear, and all that remains is to remember those who have departed.” About another chess player, Spassky’s coach (Vladimir Zak), whose family had moved him to an old age home in Moscow soon after he turned 80, Sosonko writes: “He had embarked on the very last period of life, ‘when everything is left behind — even old age, and all that remains is senility and death’.” These words are almost cruel in their bitter truth. Being Mortal is about these two phases of life — and their termination — which many of us will have to pass through. The book is a masterpiece, beautifully and thoughtfully written, and packed with information on a taboo subject we need to inform ourselves about. It’s a practical book that will get you thinking about your own attitudes to aging, illness, medicine, nursing, dying, and death, so that when you are yourself put to the test, you will hopefully be better equipped to take decisions that will meet your needs. There are only two shortcomings of the book that I can think of. One, the emphasis on physical diseases means that the psychology of growing old is given short shrift. And two, Lou, one of the characters in the book, at one points states “The Japanese have the word karma.” Gawande should’ve pointed out that it’s the Indians who have that word, not the Japanese. Yes, I agree: that’s a niggling complaint. πŸ™‚ You can sample a long article by Gawande that has found its way in the book, here: What Should Medicine Do When It Can’t Save You.

The Russian poet Nekrasov, in the throes of his final illness, wrote in his journal “You asked for an easy life from God, when you should have asked for an easy death.” Being Mortal can help you and me think about what we need to do to ease our passage to the hereafter.

Finally, a note about the photo on top of this post. I shot it in a reflex action while seated inside a moving auto. He is despair personified. Something about him seemed familiar, and then I remembered. He is the same person I’d photographed over a year ago, again from a moving auto: see Thy Staff and Thy Rod, They Comfort Me. There’s the same staff, the same plastic bag, the same saffron mundu. It’s great to see him again, and I now think he’s taking the pause that refreshes. He may not be plunged in despair. He seems to walk great distances despite his age. Scratch that earlier comment about despair personified; I’d like to think he personifies the resilience of the elderly.

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  1. Thanks for this very detailed review of the book. I am currently reading, on the recommendation of another friend, and would highly recommend it too.

  2. A friend of mine (age 89) has been raving about this book. I think I (age 64) need to read it.

    • I think everybody needs to read it as it’s as much about modern medicine as about growing old.

  3. Thank you!

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