I read this book a fortnight ago, by my brother's bedside, at a time when both he and I knew he was dying. Any book one reads in such a situation has to be absorbing, perceptive and worth the read. This one was; it was both relevant and pertinent. I read it all.
"We know less and less about our patients but more and more about science."
The author of Being Mortal: Medicine and What Matters in the End is Atul Gawande. He is an eminent American surgeon and author, who conducts research into public health issues. A careful and sensitive analyst, Atul Gawande is often included in lists of top global thinkers. He has delivered Reith Lectures, held the position of director of the World Health Organisation's effort to reduce surgical deaths, and been named a Fellow for his work in investigating and articulating modern surgical practices and medical ethics. His background is partly American, partly Indian, as his parents - both also doctors - followed the Hindu religion. The family were originally Marathi people from the Maharashtra region of India. As a child however, Atul Gawande lived in Athens, Ohio, and studied at Stanford University, then read PPE (Philosophy, Politics and Economics) at Balliol College Oxford, and then did a further degree and Masters degree at Harvard Medical school. Thus both his cultural and educational background provide a diversity of approaches and in-depth knowledge for deciding issues of medical ethics.
Near the very start of the book, Gawande points out that our ideas about death, and the desirability of both aging and the dying experience to be somehow controllable under a medical regime, is a very recent Western phenomenon. In India and many other countries, for time immemorial, it has been accepted that an elderly person is valued and cared for by their family, for the whole of their life.
"In the past surviving into old age was uncommon, and those who did survive served a special purpose as guardians of tradition, knowledge and history. They tended to maintain their status and authority as heads of the household until death. In many societies elders not only commanded respect and obedience but also led sacred rites and wielded political power."
This line of action is not therefore pursued with any sense of condescension, duty or even simple kindness by the young. Rather it is just the way things are; it is a tradition of respect. Conversely to the modern Western ideal, the elderly held supreme power until they died, sometimes preventing younger family members from achieving what they wished, and perhaps resulting in great frustration. But they were the wise elders, they held ultimate control. Gawande gives an example of his grandfather, who rode around his property on horseback every day even after he was a hundred years old, to check that everything was in order. A modern view would hold that this was a reckless and foolish activity for someone so frail. Yet this tiny man in fragile health had all his mental faculties intact, and ruled his family in the same way he always had. The difference in perceptions is startling, and also pertains to highly developed countries,
"Whereas today people often understate their age to census takers, studies of past censuses have revealed that they used to overstate it. The dignity of old age was something to which everyone aspired."
Atul Gawande gives many such examples from his own childhood and early experience, plus a recent overview of how different countries have begun to change their perceptions, not always with good results. Invariably, extending life through medicine is seen to be progress, and often implemented too quickly. Scholars have identified the three stages of medical development which countries go through, which parallel their economic development. In extreme poverty most deaths occur in the home, as people do not have access to any professional help. As a country's economy improves and incomes rise, people begin to turn to health care systems and as a result often die in hospitals. But in the third stage, when incomes rise to their highest levels, people have the ability to become interested in the quality of their lives, and ironically choose to die at home.
Yet medical intervention and treatment so often gets stuck at the second stage. This may result in people's actual choices being impaired, and decisions made without the full knowledge or understanding by all involved. This theme is part of the main thrust of the book.
The author also approaches this ethical conundrum from the other end. He examines what has happened in recent years in the USA in particular, and how the medical establishment has completely monopolised the business of dying, to the extent that earlier long-established ideas and principles common to all humans, are now never even considered. He bravely cites himself as a culprit, detailing how it took him quite a few years as a practising surgeon, to begin to question whether he had the right to ride roughshod over other approaches to the question, "What matters in the end? How can we ensure that an individual really achieves what they want at the end of their life?" Had he made the cardinal error of surgeons; that of being so committed to extending life, that he continued to carry out procedures that in actuality extended suffering, rather than enhancing life itself?
Atul Gawande gives both examples from his medical experience, plus many examples where he has investigated and interviewed those involved. The text is heavy with anecdotes and stories which illustrate his points well, making extremely interesting and accessible reading. It is not always easy to read this sorry catalogue of clinical and domestic details, however, despite Gawande's flowing prose. So often the "experts'" best intentions are frustrated. So often people are provided with choices but not given the information which is most helpful. So often people do not yet know the questions which they should ask; those which would serve them best. The legal phrase, "the truth, the whole truth, and nothing but the truth" springs to mind. Clinicians, and those assessing care for the elderly, may well answer the questions posed. But the answers, particularly those given by doctors, if not understood in their full context, often prove to be misleading and extremely damaging for the lifestyle of the person asking. It is important to distinguish between "person", and "patient" here. Not everything can, or should, be "fixed" and made well.
"We make it possible for them to make it home - weaker and more impaired, though. They never return to their previous baseline."
We are human, not immortal. Dying is a natural, inevitable consequent of living. This sometimes tends to be forgotten. For example, sometimes a person in their desire to be healthy, do not properly understand that a certain operation may be extremely difficult and painful, and that at best it can only provide temporary relief; that they can never achieve the previous physical state which they desire.
"the people who opt for these treatments aren't thinking a few added months. They're thinking years. They're thinking at least they're getting that lottery ticket's chance that their disease might not even be a problem any more."
"Ninety-nine per cent understand they're dying, but one hundred per cent hope they're not ... They still want to beat their disease."
Some people may live longer without an operation. If they are offered careful specialist help to make it the sort of life they would enjoy, they might possibly then choose this option. Even if an operation can extend their life, the quality of life afterwards may not be fully explored, before a decision to commit to the operation is made. In other cases the individuals are not elderly, but merely people who have serious enough conditions to be judged as close to the end of their life. Or perhaps the people are elderly, but not suffering especially from any serious condition, but just "gradually falling apart", as one doctor says. Atul Gawande describes one resident of a care home, who displays a common feeling the elderly have,
"she didn't really want anyone to take care of her; she just wanted to live a life of her own. And those cheerful border guards had taken her keys and her passport. With her home went her control ... How did we wind up in a world where the only choices for the old seem to be either going down with the volcano or yielding all control over our lives?"
He carefully catalogues the development of various types of care homes and hospices, pointing out in which way they are successful, and how they can also be more akin to prisons. He observes,
"The sociologist Erving Goffman noted the likeness between prisons and nursing homes half a century ago in his book "Asylums""
And in the current case study mentioned,
"All privacy and control were gone. She was put in hospital clothes most of the time. She woke when they told her, bathed and dressed when they told her, ate when they told her. She lived with whomever they said she had to."
Such instances are often a result of legal rules; a standardised demand to meet prescribed standards of hygiene and safety. These are designed to protect the people in such care homes, but in fact only increase their institutionalisation, their feeling that they are living,
"A life designed to be safe but empty of anything they care about."
People denied individuality will either give in apathetically, or resist in any way they can, thereby risking appearing ridiculous to those in charge,
"Nursing home staff like, and approve of, residents who are "fighters" and show "dignity and self-esteem" - until these traits interfere with the staff's priorities for them. Then they are "feisty" ... non-cooperation - refusing the scheduled activities or medications. It's a favourite word for the aged."
The author also examines instances where elderly relatives live with their children, which often seems to be seen as a gold standard of care. Yet even when this has been a mutually agreed wish on both sides, he shows that all too frequently it has not really worked out for any individuals involved.
Atul Gawande does not shy away from difficult issues. He briefly enters the debate about assisted dying (also termed "assisted suicide" or "death with dignity") which is legal in countries such as the Netherlands, Belgium and Switzerland, and certain states in the US such as Oregon, Washington and Vermont. But by far the main part of this second half is concerned with the various ways of assisting people to have the old age they would themselves choose, whether in their own adapted home with help, or by moving to a wider community such as an assisted living facility, or
"something of an intermediate station between independent living and life in a nursing home."
He points out that it is a long road,
"there are costs to averting our eyes from the realities. We put off dealing with the adaptations that we need to make as a society. And we blind ourselves to the opportunities that exist to change the individual experience of aging for the better,"
And he charts all the progress made since the 1980's when Keren Brown Wilson, who initially had the concept, first built her home for the aged in Oregon, where they could live with freedom and autonomy, however limited they became by their physical deterioration.
"The key word in her mind was "home". Home is the one place where your own priorities hold sway."
"People can't stop the aging of their bodies, but there are ways to make it more manageable and to avert at least some of the worst effects."
The psychologist Laura Carstensen studied the emotional experiences of a large number of people from a variety of backgrounds and ages over many years. She called her resulting hypothesis the "socioemotional selectivity theory". In essence this derives from the interesting conclusion that how we choose to spend our time depends on how much time we perceive ourselves to have.
"When life's fragility is primed, people's goals and motives in their everyday lives shift completely. It's perspective, not age, that matters most."
Once this has been taken on board, it becomes clear that nobody can accurately prescribe for another, which activities they will choose to follow in extreme old age. Too often assumptions are made about what "old people" will like, and in each individual case, this may not be anywhere near the truth.
In addition there is the temptation to over-protect,
"Many of the things we want for those we care about are things that we would adamantly oppose for ourselves because they would infringe upon our sense of self."
My favourite anecdote from this book is that of Bill Thomas. He was a working class boy who had surprised everybody by going to Harvard Medical school. He worked as a doctor, but was also committed to a self-sustaining lifestyle, growing his own food and using solar and wind power on his homestead. He eventually accepted a position as head of a nursing home because he believed it would give him more time to develop this side of his life, rather than continuing as an Accident and Emergency hospital doctor. Yet he quickly identified the mistaken thinking behind any nursing home's regime, describing "Three Plagues" of nursing home existence - boredom, loneliness and helplessness. His solution, which succeeded beyond anyone's expectations, seems both ludicrous and frivolous in the extreme. He introduced two dogs, four cats and a hundred parakeets into the home; not gradually but all at once, in a chaotic mix where residents and staff alike had to think on their feet. It is extraordinary that he ever managed to get the plans approved by the various authorities! And it is even more startling that the idea was such a phenomenal success. He said to the author that,
"Habit and expectations had made institutional routines and safety greater priorities than living a good life and had prevented the nursing home from successfully bringing in even one dog to live with the residents."
Atul Gawande's description of the episode is a delight from start to finish, pointing up the human components throughout, the stupefaction, the clueless, bumbling incompetence, the lack of experience - but ultimately the teamwork, laughter and joy in life which resulted from this simple ploy where someone just thought outside the box for a moment.
"the effect on residents soon became impossible to ignore: the residents began to wake up and come to life ... The lights turned back on in people's eyes."
There is a fundamental need in humans for a reason to live. In the early 1970's two psychologists, Judith Rodin and Ellen Langer did a study on the difference in a nursing home between residents who were given a plant to care for, and those who were not. The difference was marked. Even such a small responsibility as caring for a plant had a measurable difference in quality of life, with residents becoming more active and alert and living longer.
"the lesson seems almost Zen: you live longer only when you stop trying to live longer."
Gawande concludes,
"Medicine's focus is narrow. Medical professionals concentrate on repair of health, not sustenance of the soul."
He identifies the three types of doctor. Isolating these types I could immediately assign doctors and surgeons of my own experience to the relevant category.
The first is a "paternalistic" approach, where the doctor is a medical authority who is trying to ensure that the patient has the treatment which the doctor believes is the best for them. This is a traditional approach, and there are still quite a few doctors around who act this way.
The second is almost its opposite; Atul Gawande terms it an "informative" approach. The doctor tells the patient the facts and figures. The rest is up to the patient to decide. This is quite a common approach nowadays.
The third approach is arguably by far the best. In this the patient would have all the relevant information, but also much-needed guidance. This is termed an "interpretative" doctor-patient relationship, or "shared decision-making". The key is to determine what is important to the patient. A good question for a doctor to ask would therefore be, "What is important to you? What are you most worried about?" When this is made explicit, the way forward to which facts and figures would be most helpful, and thus the way to proceed, may be a lot clearer. I can personally remember instances where I have been happiest with medical matters, both for myself and for my loved ones, and in each case I would say that the professionals involved were using this "interpretative" technique.
Much of this book is relevant, whatever country you are living in, although many of the examples given of hospices are those in the US. There is ground-breaking work being done in this area, particularly regarding assisted living and ways of assessing what people want and need at the end of their life. It has to be said though, that as I was reading the book, I was heartily glad that I live in the UK, a country with - at the moment - a superlative health service. I have to now qualify this statement, as many professionals involved make it abundantly clear that the service is crumbling. Paramedics, nurses and doctors, have all relayed statistics to me recently which mean that on paper, with the current cutbacks, things just should not work. Yet because of individuals' compassion, dedication to the job, hard work and determination, they do, at the moment. Things are on a knife-edge.
I was relieved that my brother was not a statistic in a book such as this. That we - with assistance from the professionals - had been able to give him the ending to his life which, although it had come too early, was the one he desired. He was able to spend some time in a hospice, a good one too, and from there be sent home to his wonderful sea view, and continue to have dedicated hospice care at home. I was relieved that although he could take no food, and ultimately refused tube feed, the way he decided the end of his life was totally under his control. At every stage he had the choice. He was given oxygen, hydration and painkillers when required to relieve suffering. All his care was extremely kind and respectful, and he died a dignified death. According to everything I read in this book, we got it right.
My brother, after successful treatment for a virulent cancer, had been actively involved on the board of the Royal Marsden - a famous London Cancer Hospital. He had also been on the committee of the Royal College of Surgeons, before his final illness. And when he saw me reading Being Mortal: Medicine and What Matters in the End, knowing of the author's work, and at the tail end of his life with only days to live, he smilingly approved.
Atul Gawande is a caring, compassionate, respectful and intelligent person. Long may he continue his reflections, research, investigations - and continue writing these important books.
"Courage is strength in the face of knowledge of what is to be feared or hoped. Wisdom is prudent strength."
"All we ask is to be allowed to remain the writers of our own story. That story is ever changing. Over the course of our lives, we may encounter unimaginable difficulties. Our concerns and desires may shift. But whatever happens, we want to retain the freedom to shape our lives in ways consistent with our character and loyalties."
"I hope to face the end calmly and in my own way."