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Below Extinction’s Alp

Seamus O’Mahony

Being Mortal: Illness, Medicine and What Matters in the End, by Atul Gawande. Profile Books, 288 pp, £15.99, ISBN: 978-1846685811

Atul Gawande is the most influential living medical doctor. Dr Phil may have the daytime TV audience, Deepak Chopra the flaky celebrities, but Gawande has a series of bestselling and critically acclaimed books, the ear of the president and the 2014 Reith lectures. An American of Indian origin, Gawande works both as a surgeon at the Brigham & Women’s Hospital in Boston and as a staff writer at The New Yorker. Like his fellow contributor at the magazine Malcolm Gladwell, he is good at explaining complex ideas in clear, simple English.

Now the world’s top doctor has tackled what for many is the most pressing existential issue of the age: how we care for each other in old age and at the end of life. The title Being Mortal is a little misleading: more than half of this book (147 of its 263 pages) concerns itself with the harsh realities of growing old and losing one’s independence rather than death and dying as such. Much of the second half of the book is an elaboration of a long piece he wrote for The New Yorker in 2010 called “Letting Go”. This, along with a moving account of his father’s illness and death, occupies the second half of the book, and concerns itself directly with death.

For a European reader, pretty much all of what Gawande has to say is uncontroversial. What makes him remarkable is the fact that he is the product of the American medical educational system and practises in what is undeniably the most dysfunctional health system in the developed world. Furthermore, he works in a “hard” specialty (surgery), and not a touchy-feely area like geriatrics, psychiatry, general practice or palliative care. Letting Go is a blistering attack on modern American medicine, and, in particular, oncology (cancer treatment), which seems to offer many patients a toxic combination of false hopes and a bad death.

Gawande employs his tried and tested technique of exploring complex issues by telling the stories of individual people. His conclusions must make for uncomfortable reading for his colleagues. Most patients with terminal cancer never get to discuss end-of-life care with their doctors, and are routinely offered expensive, dangerous and futile treatments. Ordering another scan or giving more chemotherapy is always an easier option than having the Hard Conversation. The emotional climate is one of histrionic pretence:

We’ve 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.

Scientific medicine had a golden era lasting from about 1940 to 1990. Prior to that, medicine was largely useless. “Medicine used to be simple, ineffective and relatively safe,” wrote the paediatrician Sir Cyril Chantler. “Now it is complex, effective and potentially dangerous.” The spectacular advances during the golden era planted the idea in the public imagination that medicine was invincible, and that any disease could be beaten, particularly if you “fought it” hard enough. So all-conquering was American medicine during this period that Richard Nixon officially declared War on Cancer in 1971, predicting total victory by 1976.

But things are slowly changing in the US; hospice care has emerged as a major success story, and Gawande presents persuasive evidence that patients with incurable cancer, and, indeed, other incurable diseases, do better in every conceivable way if they are treated by hospice (palliative) doctors and nurses.

A landmark study from the Massachusetts General Hospital had even more startling findings. The researchers randomly assigned 151 patients with stage IV lung cancer, like Sara’s, to one of two possible approaches to treatment. Half received usual oncology care. The other half received usual oncology care plus parallel visits with a palliative care specialist … The result: those who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives – and they lived 25 percent longer … if end-of-life discussions were an experimental drug, the FDA would approve it.

The US medical insurance companies – usually the baddies in such stories – emerge with credit, encouraging and funding hospice care for patients with incurable diseases. Now, nearly half of all Americans die in a hospice: the comparable figure in Ireland is four per cent. And the costs are not exclusively financial: yes, patients who embrace hospice care are far less likely to receive expensive hospital treatment near the end of life, but they save in other ways too: their quality of remaining life is better; they get the opportunity to spend time with their families and to settle their affairs.

I suspect Gawande was prompted to extend his long essay “Letting Go” into a full-length book after his father was diagnosed with a spinal tumour. Gawande senior emerges as a game old party: still practising urology and playing tennis in his seventies, he had endowed a school for the poor Indian village where he was born. He was clearly inordinately proud of his son. The tumour was initially slow-growing. Gawande junior arranged for his father to see an eminent neurosurgeon at the Brigham & Women’s Hospital, an encounter that didn’t go so well:

The neurosurgeon at my hospital didn’t much like my father’s questions. He was fine answering the first couple. But after that he grew exasperated. He had the air of the renowned professor he was – authoritative, self-certain, and busy with things to do … When the doctor finished, my father didn’t ask any more questions. But he’s also decided that this man wasn’t going to be his surgeon.

His father’s encounters with various doctors prompted Gawande to contemplate what we want – and need – from doctors in the twenty-first century. Clearly, the days of the patriarchal doctor-knows-best type are over, but his replacement, the customer-friendly, “informative” doctor, who emerged when the doctor-patient relationship became recast in a quasi-commercial mould, is ultimately no better. Raymond Tallis, the great physician/philosopher has labelled these “consumer-friendly” doctors, and has argued that the emergence of this species is the end result of over-regulation, litigation, and the medical profession’s current failure of nerve. The “informative” doctor offers the patient a menu of options, making no value judgements; she is merely a supplier of up-to-date information. Well-trained in communication skills, she views herself, Tallis argues, primarily as a service-provider, and will flinch from those difficult (and unpopular) decisions which may be in the patient’s best interest. What both patients and the medical profession need, suggests Gawande, is a third-way type of “interpretive” doctor, as exemplified by Dr Edward Benzel, the neurosurgeon at a Cleveland clinic he took his father to see after their disillusionment with the eminent man in Boston.

Benzel saw himself as neither the commander nor a mere technician in this battle but instead as a kind of counsellor and contractor on my father’s behalf. It was exactly what my father needed.

Benzel reluctantly operated on Gawande Sr, but made it quite clear that the surgery was palliative, not curative. The operation bought a little time, but the tumour eventually made its presence known again, and radiotherapy was the next therapeutic option. The radiotherapy doctors lacked Benzel’s empathy, subtlety and championing of his patient’s best interests:

Pressed, he accepted. But how foolish these predictions would turn out to be. Unlike Benzel, the specialists had not been ready to acknowledge how much more uncertain the likelihood of benefit was. Nor had they been ready to take the time to understand my father and what the experience of radiation would be like for him.

The radiotherapy was of no benefit and came with a cost of serious side effects. Gawande Sr was then sent to an oncologist, who predictably offered various forms of chemotherapy (“the only thing she did not offer or discuss was doing nothing”), and even suggested that the now dying man would be “back on a tennis court this summer, hopefully”. Gawande Jr was shocked: “I couldn’t believe she’d really said that.”

If his father’s radiotherapists and oncologists emerge as cynical dealers in deluded hope, the distinctly low-tech and unglamorous community hospice nurse who visited him at his home emerges as a hero:

This wasn’t Boston. The agency was called Appalachian Community Hospice, for God’s sake. The nurse blew me away, though … She figured out he’s been taking his pain medications haphazardly … And she told him that he needed to no longer attempt to get up or around with someone helping him … In the days that followed, it astonished me to see the difference the hospice’s two simple instructions made.

These simple interventions allowed the ailing man to get strong enough to attend his son’s graduation address to Ohio University. This reader – to use Macaulay’s phrase – could scarce forbear to cheer:

I helped him to stand. He took my arm. And he began walking. I’d not seen him make it farther than across a living room in half a year. But walking slowly, his feet shuffling, he went the length of a basketball floor and then up a flight of twenty concrete steps to join the families in the stands. I was almost overcome just witnessing it. Here is what a different type of care – a different kind of medicine – makes possible, I thought to myself. Here is what a hard conversation can do.

So what happens during a hard conversation? Gawande is tutored in this by a self-appointed expert in hard conversations, a palliative care specialist called Susan Block. It boils down, apparently, to four simple questions: What is your understanding of the situation and its potential outcomes? What are your biggest fears and concerns? What goals are most important to you? What trade-offs are you willing to make, and what ones are you not? Gawande argues persuasively that addressing these questions to his father, and to his terminally ill patient Jewell Douglass, dramatically improved their quality of life as the end approached, as it clarified what really mattered to them: “if end-of-life discussions were an experimental drug, the FDA would approve it”.

Unfortunately, my own experience over many years is that there are several obstacles to having the hard conversation: families, the techno-juggernaut of modern acute medicine, sometimes the patients themselves. The path of the lie is so much easier. Gawande concedes that the hard conversation is, well, hard:

This business of deliberating on your options – of figuring out your priorities and working with a doctor to match your treatment to them – was exhausting and complicated, particularly when you didn’t have an expert ready to help you parse the unknowns and ambiguities.

Although Gawande is critical of US cancer care, individual oncologists emerge with credit. Dr Paul Marcoux, a lung cancer specialist, explains the difficulty of creating realistic expectations for his patients:

I asked Marcoux what he hopes to accomplish for terminal lung cancer patients when they first come to see him. ‘I’m thinking, can I get them a pretty good year or two out of this?’ he said. ‘Those are my expectations. For me, the long tail for a patient like her is three to four years.’ But this is not what people want to hear. ‘They’re thinking ten to twenty years. You hear that time and time again. And I’d be the same way if I were in their shoes.’

The first half of this book, which deals with losing one’s independence in old age, is much duller. Many now face an old age of incarceration in nursing homes: half of all Americans spend their last year of life in these institutions. There are several societal reasons for this: increased longevity, the demise of the multi-generational extended family, the modern obsession with safety. Nursing homes, Gawande explains, have several priorities which they consider to be greater than the well-being of their residents:

We end up with institutions that address any number of societal goals – from freeing up hospital beds to taking burdens off families’ hands to coping with poverty among the elderly – but never the goal that matters to the people who reside in them: how to make life worth living when we’re weak and frail and can’t fend for ourselves anymore.

Old people understandably view the prospect of leaving their homes for these institutions with dread: “… most consider modern old age homes frightening, desolate, even odious places to spend the last phase of one’s life.” Nursing homes offer a life of regimentation and safety, characterised by the “three plagues” of boredom, loneliness and helplessness. Can we do any better? Gawande tells the story of Keren Brown Wilson, the pioneer of the concept of “assisted living”. Wilson was inspired by the appalling experience of her mother, who was admitted to a nursing home after a stroke, and constantly begged to be taken home. Wilson opened her first “living center with assistance” for the elderly in Portland, Oregon in 1983:

The services were, in most ways, identical to the services that nursing homes provide. But here the care providers understood they were entering someone else’s home, and that changed the power relations fundamentally.

Wilson’s company expanded rapidly, and by 2000, it operated 184 care homes in eighteen states. It didn’t last:

But a distressing thing happened along the way. The concept of assisted living became so popular that developers began slapping the name on just about anything. The idea mutated from a radical alternative to nursing homes into a menagerie of watered-down versions with fewer services … It became part of the now widespread idea of a ‘continuum of care’ which sounds perfectly nice and logical but manages to perpetuate conditions that treat the elderly like pre-school children. Concern about safety and lawsuits increasingly limited what people could have in their assisted living apartments, mandated what activities they were expected to participate in, and defined ever more stringent move-out conditions that would trigger ‘discharge’ to a nursing facility. The language of medicine, with its priorities of safety and survival was taking over again.

Wilson was forced to resign as CEO of the company she had founded. “Assisted living,” she remarked, “isn’t really built for the sake of older people so much as for the sake of their children.” But there are still a few pioneers who are trying to create a better life for the frail elderly. Among them is Bill Thomas, medical director of Chase Memorial Nursing Home, who established what he called The Eden Alternative, which introduced plants, animals and children into the lives of the residents. A study comparing health outcomes of Chase Memorial residents with another local nursing home found lower mortality, and fewer prescriptions for sedative drugs at Chase. Thomas told Gawande: “I believe that the difference in death rates can be traced to the fundamental human need for a reason to live.”

Gawande reminds us repeatedly that old people have priorities besides safety and prolonging their lives. I was sharply reminded of this on a recent ward-round. A very elderly man was admitted under my care from a nursing home. At the request of the nursing staff, a speech and language therapist assessed his swallowing, and instituted a regimen of “thickened” fluids, with the intention of preventing choking: his tea, after the addition of this thickener, had the consistency of gloopy jelly. “Would you drink this?” he asked me bitterly. “We want autonomy for ourselves,” remarks Keren Brown Wilson, “and safety for those we love.”

Food, as Gawande points out, has become a battleground in this environment. In the US, over one-third of nursing home residents are tube-fed – mainly for economic reasons: tube-fed patients attract a higher rate of remuneration from the insurance companies, and it is much easier (in terms of staff costs) than spoon-feeding. Increasing regulation, the safety obsession, and hysterical media coverage can only worsen the quality of life for old people in nursing homes. Keren Brown Wilson’s vision of an environment which values autonomy, meaning and joy has been replaced by one which values safety, continuous surveillance and regimentation.

If indeed old age homes frightening and desolate places to spend one’s last days, what are we to do? Gawande gives us shining examples of excellence and humanity, such as the Eden Alternative and NewBridge, but it is clear that these are the exceptions. The core problem is this: old age has been medicalised. Doctors, by the way, didn’t ask for this: it was what society wanted. Ireland has a long and ignominious tradition of medicalising social problems: the late Mary Raftery showed how Irish psychiatric hospitals were used, in the mid-twentieth century, as dustbins for all sorts of societal problems. The current so-called “A&E crisis” also has its roots in this medicalisation of old age. For many years, I have witnessed at first hand the abandonment of old people in acute hospitals. A frail old person is admitted with an acute problem. The acute problem is fixed. The family decides that their parent can no longer live independently, thus beginning the long, inhumane process of ‘placement’. The hospital is given the task of solving what is essentially an existential, not a medical, problem.

There have been several nursing home scandals in Ireland over the last few years , which have led to demand for tighter regulation and surveillance of these institutions. The use of hidden cameras is now routinely proposed, on the grounds that inspections by bodies such as Hiqa are toothless, as the staff are pre-warned of inspectors’ visit. The people who work in nursing homes – commonly poorly paid, uneducated immigrants – will find themselves under constant scrutiny. The surgeon and memoirist Henry Marsh observed how working in a long-stay dementia ward when he was a student taught him “the limits of human kindness”. Lees Cross and Áras Attracta have demonstrated these limits, yet we are outraged when the poor and uneducated strangers to whom we have sub-contracted the unglamorous work of caring for the old and the intellectually disabled are found wanting.

We will never return to a world where frail old people are cared for by their extended families. Gawande is unsentimental about this:

We think, nostalgically, that we want the kind of old age my grandfather had. But the reason we do not have it is that, in the end, we do not actually want it. The historical pattern is clear: as soon as people got the resources and opportunity to abandon that way of life, they were gone.

Now only 10 per cent of Europeans over the age of eighty live with their children. As longevity increases and the birth rate falls, this rate will decline even further. Rather bravely, Keren Brown Wilson attributes some of the blame to the elderly: “Older people are in part responsible for this because they disperse the decision making to the children.” If there’s one practical lesson from Being Mortal it’s this: take control of your own life – particularly your old age and your dying. Gawande is a strenuous advocate for advance directives, or living wills. He describes the experience of such directives in the Wisconsin town of La Crosse. Here, nearly twenty years ago, it became routine practice for all patients admitted to a hospital or nursing home to sit down with “someone experienced in these conversations” and complete a questionnaire which comprised four questions:

1.         Do you want to be resuscitated if your heart stops?
2.         Do you want aggressive treatments such as intubation and mechanical ventilation?
3.         Do you want antibiotics?
4.         Do you want tube or intravenous feeding if you can’t eat on your own?

By 1996, 85 per cent of La Crosse residents who died had filled in this form (previously the figure was 15 percent). Inappropriate interventions, such as intensive care admission for people with advanced cancer, fell dramatically. In Ireland, legislation for advance directives is being prepared. Willie Molloy, professor of geriatrics at University College Cork, has started a pilot programme of advance directives in nursing homes called “Let Me Decide”. Early data show dramatically lower rates of referral to acute hospitals from nursing homes which routinely use advance directives.

Gawande makes a passionate case for the expansion of geriatrics, or gerontology, as the specialty is known in the US. He visits the outpatient clinic of Juergen Bludau, the chief geriatrician at his hospital, and is treated to a somewhat stage-managed performance. Gawande observes Bludau’s encounter with an elderly lady: he asks detailed questions about her breakfast habits, and does a careful examination of her feet: “When he got her socks off, he took her feet in his hands, one at a time. He inspected them inch by inch – the soles, the toes, the web spaces.” I read this wondering how many patients Dr Bludau managed to see at an average outpatient clinic.

Although Bludau is a little sanctimonious, geriatrics works. Gawande quotes a study from the University of Minnesota, which showed that frail elderly people who had seen a geriatrics team were twenty-five per cent less likely to become disabled, and just half as likely to develop depression as those who had not. They were forty per cent less likely to require home help services. These results, Gawande concludes, are “stunning”. Within a few months, however, of the publication of this study, the University of Minnesota closed its department of geriatrics: “What geriatricians do – bolster our resilience in old age, our capacity to weather what comes – is both difficult and unappealingly limited.” Compared to say, cardiologists and radiologists, geriatricians’ income in the US is modest; dealing every day with elderly people who are frequently deaf and demented requires patience and empathy – many doctors simply don’t like old folk. Graduating doctors are not attracted to geriatrics: only three hundred geriatricians complete their training every year in the US, a tiny figure given the population. Gawande wonders what can be done:

I asked Chad Boult, the geriatrics professor, what could be done to ensure that there are enough geriatricians for the surging elderly population. ‘Nothing,’ he said. ‘It’s too late.’ … Yet Boult believes that we still have enough time for another strategy: he would direct geriatricians toward training all primary care doctors and nurses for the very old, instead of providing the care themselves.

“Assisted dying” has become a major societal debate in Britain, and Lord Falconer’s Assisted Dying Bill is slowly working its way through the legislative process. A group of seventy-four prominent people wrote recently (December 29th, 2014) to the Daily Telegraph in support of the bill, and quoted Gawande’s remark that “we are heartless if we don’t recognize unbearable suffering and seek to alleviate it”. This gave the impression that Gawande is a supporter of their cause, but not so:

But the fact that, in 2012, one in thirty-five Dutch people sought assisted suicide at their death is not a measure of success. It is a measure of failure. Our ultimate goal, after all, is not a good death but a good death to the very end. The Dutch have been slower than others to develop palliative care programs that might provide for it.

Gawande appears to view this entire debate on assisted dying/euthanasia as a distraction:

I am less worried about abuse of these powers than I am about dependence on them … we damage entire societies if we let providing this capacity divert us from improving the lives of the ill. Assisted living is far harder than assisted death, but its possibilities are far greater as well.

We are at a unique time in human history. “To die of age,” Montaigne observed in the sixteenth century, “is a rare, singular, and extraordinary death.” Now, survival into old age (at least in the developed world) is the norm, not the exception. The baby boomers are now heading into old age, and seem to believe that the immutable laws of nature don’t apply to them; rich Americans have come to half-believe that death is optional. Advertising bombards them with images of marathon-running, disco-dancing octogenarians. Decline and death, they seem to say, is for pussies. The boomers are the first generation in history to buck against Montaigne’s imperative to “make room for others, as others have made room for you”. Wealthy Americans spend a lot of time and money maintaining their health, postponing death. Dinner party conversations centre on colonoscopies, drugs for high cholesterol and new dietary fads. Many lay people subscribe to the New England Journal of Medicine. I have noticed a similar trend in well-off, older acquaintances of mine: health, and its maintenance, has become their hobby. All quite laudable, but let’s take this trend to its logical conclusion. What are the consequences for society if average life expectancy rises to one hundred, or even more? We have already seen radical changes to pension provision, as life expectancy rises and the birth rate (among white Europeans) falls. We face the prospect of an army of centenarians cared for by poorly paid immigrants. The children of these centenarians can expect to work well into their seventies, or even eighties. The world of work will alter dramatically, with diminishing opportunity for the young.

Although average life span has increased dramatically, maximum life span (one hundred and ten to one hundred and twenty) is static. Many “immortalists” believe that the biotechnology which will dramatically increase the human life-span – or even make us immortal – is just around the corner. But until that happens, “we just fall apart”, as the gerontologist Felix Silverstone tells Gawande. Human beings fail the way all complex systems fail: randomly and gradually. James F Fries, a professor of medicine at Stanford, coined the term “compression of morbidity” in 1980. This theory states that rising life expectancy will be accompanied by less – not more – disability as we age. Old age in the future will be a period of vigorous health, with a short, final period of illness, followed by a swift and relatively painless death. Even Raymond Tallis is a fervent believer in this, and for the American baby boomers, who desperately want it to be true, it is sacred writ. But it is wrong. Study after study has shown that increasing age is accompanied by increasing disability and dependence. The American bioethicist Ezekiel Emanuel (older brother of Chicago mayor Rahm) wrote a controversial essay for The Atlantic in September 2014 called “Why I hope to die at 75”. This is no pro-euthanasia polemic, but rather a well-argued diatribe against what he called “the American Immortal”:

I reject this aspiration. I think this manic desperation to endlessly extend life is misguided and potentially destructive. For many reasons, 75 is a pretty good age to aim to stop. Americans may live longer than their parents, but they are likely to be more incapacitated. Does that sound very desirable? Not to me.

Gawande quotes Philip Roth’s bitter observation that “old age isn’t a battle: it’s a massacre”, and tells us several stories of people losing their independence in old age, and then enduring the nursing home curses of loneliness, boredom and helplessness. These include Gawande’s grandmother-in-law, Alice Hobson, who chose not to summon help when she fell suddenly ill at her nursing home, and died alone and in pain; Felix Silverstone and his wife, Bella, and the widower Lou Sanders. What are we to do? We will not see a return of the pre-industrial extended family; the future is urban, atomised and medicalised. But the elderly have two powerful commodities: money and political power. We have witnessed U-turns on social provision for the elderly after concerted political action. The baby boomers are the richest generation in human history, and the first to see their children poorer. If the boomers could ditch their obsession with safety and longevity at any cost, they have within themselves the power to fashion a new model of old age and coping with loss of independence.

Much of this book is aimed at doctors. Gawande admits that his training ill-equipped him for the complexities of dealing with old and dying people. He is pleasantly surprised to observe that caring for patients you can’t cure – the dying – is a source of professional satisfaction:

I never expected that among the most meaningful experiences I’d have as a doctor – and really, as a human being – would come from helping others deal with what medicine cannot do as well as what it can. But it’s proved true, whether with a patient like Jewell Douglass, a friend like Peg Bachelder, or someone I loved as much as my father.

All doctors, he argues, must learn the skills of hospice physicians: “no separate specialty required”. Humane care of the dying should be at the heart of what medicine does, but our approach has been all wrong:

Over and over, we in medicine inflict deep gouges at the end of people’s lives and then stand oblivious to the harm done … We’ve been wrong about our job in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. But whatever we can offer, our interventions, and the risks and sacrifices they entail, are justified only if they serve the larger aims of a person’s life.

The book closes with an epilogue, in which Gawande describes a trip to the holy Hindu city of Varanasai to spread his father’s ashes on the waters of the Ganges. The ceremony requires Gawande to sip some of the river water, which gives him a Giardia infection, a price worth paying, he concludes, for being part of the ritual, and for accompanying his father on the way to death, for being his amicus mortis:

When to shift from pushing against limits to making the best of them is not often readily apparent. But it is clear that there are times when the cost of pushing exceeds its value. Helping my father through the struggle to define that moment was simultaneously among the most painful and most privileged experiences of my life.

Given Gawande’s profile, Being Mortal is likely to be a huge success. Which is good: the hard conversation is long overdue.

Seamus O’Mahony is a consultant physician and a regular contributor to the Dublin Review of Books.