Being Mortal - Illness, Medicine and What Matters in the End

Atul Gawande (2014), Profile Books, 282 pages, £8.99. ISBN: 978-1-8466 8-582-8

Being Mortal cover image

I have long contended that the primary theme of the Book of Books is life and death – those two words occur about 1,000 times, in a ratio of approximately 60:40.  I have also long contended that a preacher's primary purpose is to get his people into heaven – to live the good life and to die ‘in Christ’ (1 Thessalonians 4:14-16).  Christians should therefore be profoundly aware of our human mortality – there is a deathbed that awaits everyone.  So, a book with the title Being Mortal should fascinate us all.

Moreover, this book is already a huge winner.  It is an international best-seller, it has won numerous prizes and undoubtedly sold millions of copies.  The author is famous too.  He has a string of degrees from Stanford, Oxford and Harvard.  He is now a surgeon in Boston, a professor at Harvard, an award-winning writer and in 2014 he delivered the BBC’s Reith lectures, four highly-acclaimed talks entitled, The Future of Medicine.

Gawande was born in 1950 in Brooklyn, New York.  His parents, both doctors, were immigrants from India, but he has readily adopted the all-American way of life – at least, he has named his children Walker, Hattie and Hunter!

The book’s structure
First, Being Mortal is a jolly good read – I zipped through its 282 pages in about a week, which is high-speed for me.  Gawande writes exceptionally well – the prose flows, the pace is measured and the stories are gripping.  And it is full of learning – I made copious notes in the margins.

Second, Being Mortal is something of a revolutionary book.  Though it examines those ancient themes of life and death, it pulls no punches when it comes to twenty-first-century ageing and dying and death.  His thesis is simple – though medicine generally keeps us alive wonderfully well, in the area of dying it has signally failed us.  Doctors have over-medicalised death.  We have often not allowed the dying to die.  Gawande maintains that (p. 9), ‘The waning days of our lives are given over to treatments that addle our brains and sap our bodies for a sliver’s chance of benefit.’  And he argues that (p. 155), ‘People with serious illnesses have priorities besides simply prolonging their lives.  Our system of technological medical care has utterly failed to meet these needs …’

Third, Being Mortal raises alternatives.  Gawande examines the end goal of medicine and refocuses it.  He claims that good medicine is not about ensuring a good death, but a good life.  In this he echoes Cicely Saunders’ grand palliative care mantra, ‘You matter because you are you, and you matter to the end of your life.  We will do all we can not only to help you die peacefully, but also to live until you die.’

The book weaves these arguments through the stories of several terminally-ill people and their families.  We meet ordinary patients like Nelene Fox and Alice Hobson, but also pioneering carers like Sarah Creed and Keren Wilson, as well as outstanding doctors like Bill Thomas and Edward Benzel.  We travel from homes to assisted living facilities to nursing homes to hospital wards.  For many that road is institutionalised, regimented and anonymous.  Gawande rails against this.  He calls for a coherent and compassionate strategy of medicine to bring about good end-of-life care, whether at home, hospital or hospice.  But Gawande is not content to produce a mere travelogue of medical facilities.  He wants to drill down and deeply challenge our thinking about being mortal.  He is countercultural.

Gawande’s medical insights
Gawande, as a practising and thinking physician, has some profound insights into his trade.  For example, on p. 200, he explains the changing doctor-patient relationship.  First it was ‘paternalistic’.  I’m the doctor and I know what’s best for you – take the red pill.  Then it became ‘informative’.  I tell you the facts and figures about the red and blue pill – which one do you want?  And nowadays the relationship tends towards the ‘interpretive’.  What is it you want most?  Okay, so the red will do this and the blue will do this to achieve your priorities.  This tactic is aimed at a shared decision making.  In addition (p. 207), there is the doctor’s bad news strategy, the ‘ask, tell, ask’ approach.  Gawande describes it as, ‘They [the doctors] ask what you want to hear, then they tell you, and then they ask what you understood.’

Gawande’s pithy sayings   
Gawande is a master raconteur and the book is sprinkled with truisms and aphorisms – some funny, some uncomfortably true.  For example (p. 89), he recognises that for many old people, the keyword is home.  ‘Home is the one place where your priorities hold sway.  At home, you decide … Away from home, you don’t.’  And on p. 130, ‘… the best thing in your life is when you can go yourself to the bathroom [toilet]’.’  And when discussing (p. 187) the sort of cancer surgeon you want, ‘You don’t want Custer.  You want Robert E. Lee, someone who knows to fight for territory that can be won and how to surrender it when it can’t.’

The current problem
Gawande starts at the beginning (p. 17), ‘Elders were cared for in multigenerational systems, often with three generations living under one roof’, he is adamant that, for most Westerners, this traditional role of extended family caring has needfully become wistful thinking.  Global development, personal mobility and employment opportunities have transformed societies so that the extended family has been largely superseded by the nuclear, or even the disintegrated family.  These changes have brought about the veneration of ‘the independent self’.  But they have also created a problem.  Sooner or later self-independence becomes impossible – serious illness or infirmity will strike.  What do we do when independence can no longer be sustained?  New patterns of care are needed.

And we could all benefit from a little lesson in geriatrics (p. 25).  In times past, life for most people ‘would putter along nicely’ until illness hit.  Then the bottom would drop out.  It was like death by ‘walking off a cliff’.  By contrast, modern medicine has caused our decline to be typically characterised by ‘a mountain road descent’, the fall is slowed by numerous medications and therapies.  And nowadays there is a third trajectory.  Increasingly large numbers of people live a full life and simply die of old age with no particular cause of death.  It is more like ‘a long slow fade’.  These differing scenarios have had a profound effect upon medical practice.  Doctors usually excel when faced with a discrete problem, be it a broken leg or a heart attack.  They can apply plaster of Paris or prescribe pills.  But the ‘long slow fade’ is beyond repair and therefore medically less interesting.  The lesson here is that, at some stage, the declining body simply cannot be fixed, but it can be managed.  Gawande summarises this lesson on p. 44.  ‘Decline remains our fate; death will someday come.  But until that last backup system inside us fails, medical care can influence whether the path is steep and precipitate or more gradual, allowing longer preservation of the abilities that matter most in your life.’

The signs of aging
Throughout the book Gawande draws some vivid pictures.  He says, for instance (p. 30) that ageing is a combination of softening and hardening – our teeth and bones soften, while our blood vessels and joints harden.  He says, we are in decline as evidenced by our shoddy handwriting, lack of multitasking and muscle strength.  He says, look at the muscle at the base of your thumb – is it bulging or flat, are you young or old?  But, Gawande insists, this is all natural.

He notes that the elderly tend to fall over.  A fall, ‘that harbinger of unstoppable trouble’, is both a serious threat and an alarm bell.  Falling often results in a broken hip and if that occurs, no one ever regains their former mobility, in fact, 20% never walk again.  Gawande explains the three primary risk factors (p. 40) – poor balance, more than four prescription medicines and muscle weakness.  If none of these factors are present, the elderly have only a 12% chance of falling within a year.  If all three are present then the chance is almost 100%.

Gawande continues to tell it like it is (p. 55), ‘It is not death that the very old tell me they fear.  It is what happens short of death – losing their hearing, their memory, their best friends, their way of life.’

So, we can all agree that the aged need help.  What about a nursing home?  What is Gawande’s view?  He rails against those dismal nursing homes with their Three Plagues of ‘boredom, loneliness, and helplessness’.  He wants to burn them down.  Though he happily recounts an experiment at one such establishment where plants, dogs, cats, 100 birds and even children were introduced – it was a roaring success for the residents and staff.  And he examines your chances of avoiding a nursing home altogether (p. 79).  This is, according to Gawande, ‘…directly related to the number of children you have, and … having at least one daughter.’  At the same time, he highlights that our modern dependence on dual incomes often leads to ‘… results that are painful and unhappy for all involved.’

What makes life worth living?
Here is another probing question that Gawande raises (p. 92).  ‘What makes life worth living when we are old and frail and unable to care for ourselves?’  Is it safety and survival, as the influential American psychologist, Abraham Maslow, asserted in the 1940s?

Gawande paints a more complex picture.  He believes that the young seek personal growth and self-fulfilment, otherwise known as ‘self-actualization’.  But as we age, we narrow in, we reduce our time pursuing achievement and social networks.  So, whereas young people prefer meeting young people and extending their circle, old people prefer the opposite – they focus on being, rather than doing.  And so contrary to expectation, and according to the work of another American psychologist, Laura Carstensen, the elderly find ‘living to be a more emotionally satisfying and stable experience.’  In other words, ageing brings about a greater appreciation of everyday pleasures and relationships – vanity and ambition quietly disappear.  I like that.  But above all, it means that the elderly need simple everyday comforts and companionship – that is the key to helping the aged.  A measure of home help, a little assisted living, is maybe all that is required.  It is also the answer to choosing between neglect and institutionalisation, which Gawande believes (p. 103) is ‘among the most uncomfortable questions we face.’

Drawing on the work of the philosopher, Ronald Dworkin, Gawande agrees (p. 140) that, ‘Whatever the limits and travails we face, we want to retain the autonomy – the freedom – to be the authors of our lives.’  And again on p. 146, ‘As people become aware of the finitude of their life they do not ask for much.  They only ask to be permitted, insofar as possible, to keep shaping their story of their life in the world.’

The paramount chapter
Chapter 6, entitled Letting Go, is probably the paramount section of the book.  Gawande, the great doctor, surveys the aged and the ill and comes to realise that, ‘… making their lives better often requires curbing our purely medical imperatives – resisting the urge to fiddle and fix and control.’  It poses the great question – ‘When should we try to fix and when should we not?’  He quotes (p. 155) from a 2008 Coping with Cancer project, that terminally-ill cancer patients subjected to ‘… intensive care had a substantially worse quality of life in their last week than those who received no such interventions.’  He continues, ‘Spending one’s final days in an ICU [intensive care unit] ... is for most people a kind of failure.  The end comes with no chance for you to have said good-bye or “It’s okay” or “I’m sorry” or “I love you”’.  In other words, there are no last words.

One of the greatest obstacles to ‘letting go’ is the unpreparedness of not only the patient, but also the family – they are unready to confront human mortality.  And if doctors have problems estimating survival times, families invariably overestimate them – the doctor may be thinking of added months, the family is usually thinking of years.  As he has stated earlier (p. 187), ‘Some are deluded by a fantasy of what medical science can achieve.’

Moreover, doctors tend to adopt a battle mode rather than a palliative approach and the family frequently eggs them on.  These relatives know that out of, say 100 terminally-ill patients, one or two may rally after aggressive treatments – it is what is statistically referred to as ‘the long tail’.  Gawande (p. 171) opines, ‘The trouble is that we’ve built our medical system and culture around the long tail.  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.  Hope is not a plan, but hope is our plan.’

The hard conversations
What everyone needs is end-of-life discussions, which Gawande promotes in Chapter 7, Hard Conversations.  What do you want at the end – resuscitation, ventilation, antibiotics, tube feeding?  These conversations that leads to an understanding and acceptance of our mortality are a process, not an epiphany.  And the words matter.  Gawande helpfully quotes (p. 182) the advice of palliative care specialists.  ‘You shouldn’t say “I’m sorry things turned out this way”, for example.  It can sound like you’re distancing yourself.  You should say, “I wish things were different.”  You don’t ask, “What do you want when you are dying?”  You ask, “If time becomes short, what is most important to you?”’

The end of life entails difficult choices.  The hard conversations make decision making easier.  Gawande gives the example of a 74-year-old emeritus professor of psychology facing surgery to remove a cancerous mass in his spinal cord.  The procedure carries a 20% chance of leaving him quadriplegic, but without it he has 100% chance of becoming quadriplegic.  He and his daughter, Susan Block, a palliative care specialist, chat the night before the proposed surgery.  As she drives home, she realises she does not know what her father really wants.  She turns the car round and goes back to the hospital.  She and her father have the agonising conversation.  It transpires that her father is willing to have the operation and its consequences if, ‘I’m able to eat chocolate ice cream and watch football on TV.’  That response shocks his daughter.  ‘He’s never watched a football game.  It wasn’t the guy I thought I knew.’  The operation goes badly wrong and the surgeons want him back in.  What does she do?  ‘I had three minutes to make this decision, and I realized, he had already made the decision.’  The surgeons assured her that he would be able to eat chocolate ice cream and watch football on TV.  So she gave the okay.  The crux was that he had decided.  He lived another ten years, disabled but able to write another two books.

The hard decisions
Eventually, even doctors have to face human mortality, close up and personal.  From p. 194, Gawande begins to recount his father’s dying and death.  ‘My father was in his early seventies when I was forced to realize that he might not be immortal.  His ‘Brahma bull’ of a father began to sink.  ‘Our family was embarking on its own confrontation with the reality of mortality.’

This brings about what Gawande refers to as the ‘breakpoint discussion’.  ‘A series of conversations to sort out when they need to switch from fighting for time to fighting for the things that people value.’  It is the switch from aggressive curative medicine to gentle palliative care.  It is what I have called in my book, The Edge of Life, the ‘crossover point’.  It is a dangerous place.  Emotions can become raw.  But its occurrence is unquestionably beneficial to doctors and family and, above all, the patient.

It happened to Gawande when his father was facing repeated tumour surgery.  ‘He and his neurosurgeon knew what was coming.  But they also knew what mattered to him and left well enough alone.’  Being mortal can be testing, but also manageable. Gawande returns to this thorny ‘fork in the road’ on p. 223.  Thinking about one of his patients he recalls, ‘We were up against the unfixable.  But we were desperate to believe that we weren’t up against the unmanageable.’

Yet doctors are neither infallible nor the captains of their patients’ lives.  As Gawande explains (p. 220), doctors can have an unhelpful and contrary mindset, ‘… the only mistake clinicians seem to fear is doing too little.’  But, he insists, ‘doing too much could be no less devastating to a person’s life.’  Gawande tells the story of Jewel Douglass, one of his cancer patient.  She eventually decided to give up on more and more medical treatment.  He recalls (p. 209), ‘She wanted to be a wife/mother/neighbour/friend again.’  And Gawande got the message.  ‘Only now did I begin to recognize how understanding the finitude of one’s time could be a gift.’  And again on p. 232, ‘… the wise course is so frequently unclear.  But the challenge, I’ve come to see, is more fundamental than that.  One has to decide whether one’s fears or one’s hopes are what should matter most.’

As Gawande clarifies on p. 238, ‘In the end, people don’t view their life as merely the average of all the moments – which, after all, is mostly nothing much plus some sleep.  For human beings, life is meaningful because it is a story.’  And the elderly have priorities beyond being merely safe and living longer – they want to shape their story.  ‘And in stories, endings matter’ (p. 239).

Euthanasia and assisted suicide
The inevitable subject was inevitably coming and, on p. 243, up it crops – euthanasia and assisted suicide.  His argument begins with the well-attested rights of patients to refuse food and water and medications and to have their pacemakers turned off.  And he also draws on ‘the double effect’ of some sedatives and analgesics.  So, according to Gawande (p. 244), ‘All proponents seek is the ability for suffering people to obtain a prescription for the same kind of medications, only this time to let them hasten the timing of their death.’  As a consequence, ‘… only the stonehearted can be unsympathetic.’  And despite his admission (p. 245) that, ‘Our ultimate goal, after all, is not a good death but a good life to the very end’ and that ‘assisted living is far harder than assisted death’, Gawande concludes that ‘Given the opportunity, I would support laws to provide these kinds of prescriptions to people.’  At this point I became substantially less enamoured with Atul Gawande.

The great omission
And I have another quarrel with him.  Despite all the glowing paragraphs and chapters in this book there is one enormous omission, one deep black hole.  There is, apart from a couple of namechecks, no God.  This is surprising for three reasons.  First, there is Gawande’s Indian ancestry and his family’s Hindu background.  Second, there is his almost entire life spent in the ultra-religious USA.  Third, there is the fact that death forces us all to consider ‘the great beyond’.

Yet one can almost feel Gawande’s impotence at this juncture.  Previously (p. 76), he has reported the poor outcomes of sub-standard care and failed communication so typical of those bad institutions.  ‘This is the consequence of a society that faces the final phase of the human life cycle by trying not to think about it.’  And he admits that we never attain the real goal, namely, ‘… how to make life worth living when we’re weak and frail and can’t fend for ourselves anymore.’

Yet Gawande ducks the God issue.  Well, to be fair, he makes a feeble stab at something transcendent.  He mentions, en passant, the work of Josiah Royce, yet another American philosopher, who stated that what makes life worthwhile is seeking ‘a cause beyond ourselves’.  Royce called this ‘loyalty’, which is the opposite of individualism.  This is just philosophical flimflam.  We need something more robust.  We need to be seeking and finding and enjoying the Triune God as man’s highest and deepest chief end.  Perhaps the closest that Gawande comes to anything supernatural is (p. 128) where he says that, ‘Medical professionals concentrate on repair of health, not sustenance of the soul.’  He then rightly assesses, ‘That experiment has failed.’  And he again rightly confirms that, ‘… we seek a life of worth and purpose’.  Yet Gawande’s bucket is empty.  My response to these most evident of human desires is to grasp the biblical assessment of human life, its genesis and its ending, look at Jeremiah 1:5 – and elsewhere – and see the identity, worth and purpose that knowing God provides.  Gawande is clearly missing out.

Some other negatives
Let me try and find something else unfavourable to say about the book, otherwise I might be accused of lacking perspicacity.  It has a largely American context and content – that is hardly Gawande’s fault.  It is also a bit long.  There are probably too many characters and stories – Gawande clearly rehearses his thesis several times.  Oh dear, that’s about it.

The book’s finale
The book ends with the death of Gawande’s father.  Of course, it is a sad affair.  The family cremates the body and spreads the ashes in three places – at his US home, at his childhood Indian village and on the Ganges River.  The Hindu rituals of the latter leave Gawande with a nasty parasitic infection.  Nevertheless, reflecting on helping his father struggle with being mortal was ‘among the most painful and most privileged experiences of my life’ (p. 262).

My conclusions
This is a longer, much longer, review than I ever intended writing.  But Being Mortal is the best book I‘ve read this year – okay, it’s only January.  Yes indeed, we all need to think sensibly about our mortality, the big conversations, the big decisions, what we want at the end of our life, how we can help the dying, what is beyond the grave, and so on.  These are primitive topics.  We only fool ourselves if we seek to evade them.

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