Being Mortal: Illness, Medicine and What Matters in the End by Atul Gawande

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

Atul Gawande

Profile Books, 2014

Atul Gawande is an American doctor whose parents came from India. His book discusses, in detail, the current state of Western medicine with regard to the end of life. We read it because of its extreme relevance; each of us has lived through, or is currently living through, the death of a family member or close friend from different kinds of terminal illnesses.

These days, doctors and nurses are (highly) trained to do things. They identify what is wrong and see what can be done to fix it. They are not trained to cope with death, or to discuss the subject of death, still less to relate to patients on a personal level.

According to Gawande (p. 166), more than 40% of oncologists admit to offering treatments that they believe unlikely to work. And the doctor-patient relationship is increasingly miscast in retail terms: “The Customer is always right”. Sick people want to be “better”, to regain the life they had before; doctors are hesitant to trample on patients’ expectations and are not trained to explain to them just how little hope there is of recovery, for example, or just how little time they may have.

Gawande shows that this often results in terminal patients being subjected to drastic operations, chemotherapy, etc., but not being shown realistically what their situation is or what is the best that can be hoped for.

He also looks at all sorts of initiatives that are being set up to implement a different approach to terminal illness and end-of-life care. This includes a very good description of what a Hospice does, pp. 161 & 165. It raised the question of “Ars bene moriendi” – the art of making a good death, a mediaeval theme encouraging a consideration of what would constitute a good death. In the 20th and early 21st century, overwhelmingly, people who are asked “How would you want to die?” say they would like death to be so sudden that they knew nothing about it.

However, in practice a death like that is often devastating for those who are left behind, who have had no chance to say goodbye, let alone resolve unfinished issues, forgive or seek forgiveness, and so on. Endings matter (p. 239). A traditional Roman Catholic prayer was “From a sudden and unprovided death, O Lord, deliver us.”

Gawande focuses on the importance of having time to talk (p. 177) and even recommends paying doctors to take time to talk, not just perform (p. 187).

He has arrived at a set of questions that can help terminal patients arrive, sooner or later, at a real understanding of their situation, and that can enable them to make the best decisions on their treatment options (p. 183).

“What is most important to you?”

“What goals are most important for you now?”

“What trade-offs are you willing to make?”

“What sacrifices are you willing to make now for the possibility of more time later?”

“What are your worries?’

“What are your biggest fears and concerns?’

He also says to patients, “I am worried” (This means both “this is serious”, and “I’m on your side”).

What is needed is to help people to negotiate the overwhelming anxiety, about death, anxiety about suffering, anxiety about their loved ones, finances and process (p.182). People die only once, so they have no experience to draw upon (p. 188).

The book covers a very wide set of issues, impossible to cover adequately in a blog post like this. One point he makes is that in the case of elderly people, it is normally their children who make the choices for them, and they choose safety over quality of life every time, sometimes leading to dire results for the elderly person's happiness and well-being.

We stop the healthy from committing suicide because we recognize that their psychic suffering is often temporary (p. 244).

For the terminally ill who face sufferings that we know will increase, only the stonehearted can be unsympathetic (p.244). But assisted living is far harder than assisted death (p. 245). If you only read about this book and don’t read the book itself, you could assume that, with his emphasis on making the last stages of life as good as they can be, Gawande would naturally support the “assisted suicide” or “assisted dying” proposals. He does not. One of his 2014 Reith lectures was quoted in a letter urging “assisted dying” from a large group of VIPs, published in The Daily Telegraph on Monday December 29, 2014: “we are heartless if we don’t recognise unbearable suffering and seek to alleviate it”. They used this quotation in support of their urge to legalise “assisted dying”, a.k.a. euthanasia for terminally ill people.

But they were misquoting him by taking one sentence out of context. In fact, on pp. 244-245 of Being Mortal, Gawande looks at the Netherlands, where euthanasia has been legal for some years, and sees that palliative medicine in the Netherlands lags far behind palliative medicine in other countries such as the UK and America.  While he talks about medication to end unendurable pain, it is clear that what he has in mind is precisely what the Catholic Church has always taught: it is not wrong to provide pain-killing medication for the purpose of reducing or ending suffering in a patient with a terminal illness, even when it is foreseen that the medication will have the effect of shortening their life. What is wrong is to end one’s own or someone else’s life in order to escape suffering which can be relieved by medication.

Twelve Years a Slave by Solomon Northup

Solomon Northup, Twelve Years a Slave

1853; new edition with supplementary material and notes, edited by Sue Eakin, Eakin Films & Publishing, 2013.

We read this simply because the film had come out in the UK; otherwise, like so many people, we would never have heard of it. The book itself is fascinating. For those who had read Uncle Tom’s Cabin by Harriet Beecher Stowe, the story was horribly familiar – it confirms in a factual account what Stowe had written as fiction.

The Eakin edition is well worth getting, though some would recommend reading the narrative first and then the introduction, notes, appendices etc. Northup did not write the book himself, though it is told in the first person. As is explained by Eakin, Northup told his story to David Wilson, who wrote it up for publication. I say “wrote it up” and not “wrote it down” because the style and ornamentations are almost certainly all Wilson’s, not Northup’s. Still, the narrative does not lose the enormity of this story, the emotions and the pain undergone by Northup and the other slaves. You are sucked right in, and feel exasperated and agonized by what they experience. The book was written in a very short space of time to ride on the back of the success of Uncle Tom’s Cabin, as well as possibly to identify Solomon’s two kidnappers via those who read his story.

The book was written for a white audience, telling them the story of a slave’s life from kidnap or purchase from the slave-pen, to cotton-picking, sugarcane-cutting, labouring and trying to avoid minute by minute, every day and night, the cruelty of a master who could whip them for no reason and at any time.

We spent a lot of time discussing how people could treat slaves as they did. (Not all slave-owners were cruel, but very many of them were.) In the dialogues between Epps (Northup’s owner) and Bass (the abolitionist who eventually rescued him), it is made clear that slave-dealers and slave-owners convinced themselves, helped by the social acceptance of the practice, that slaves, “people of color” (and another word which is no longer printable), were simply not human beings. Many people in Louisiana and the rest of America believed slaves were an inferior species, little higher than an animal, with speech and limited intellect, and no rights. This is exactly what the Nazis and other twentieth-century abusers thought about their prisoners; and it is what pro-abortionists think about unborn babies. It is the only way that any of them can justify what they do. Slavery was legal then, as abortion is legal now; and as Bass tells Epps (chapter 19), the law said Epps had the right to hold slaves, “but, begging the law’s pardon, it lies.”

Epps and Tibeats, as well as the brief comment about Epps’s son (chapter 18), show the effects of the slave system on the people in it. The fact of being given unlimited power over others, and being allowed to inflict suffering on others without ever being called to account or punished for it, inevitably brings out the worst extremes of brutality in some (not all) people. The story of Epps’s dancing sessions (chapter 13) is hideously reminiscent of the behaviour of some of the Nazis in occupied Poland, the ghettoes and the concentration camps.

Some notes from chapters:

  

Chapter 6

The separation of Eliza from her children is heart-wrenching and difficult to read whether the reader is a mother or daughter. However, it is uncertain whether all of the “free” audience, who were the book’s target, could appreciate that a mother’s love and family ties were experienced by “slaves” in the same way.

Chapter 8

Northup/Wilson gives a history of plantations: land was cheap, and owners were rich. There was a huge drive to cultivate the land. Slaves were mortgaged and therefore worth a lot when alive, so that however much the planter or overseer wanted to whip them it was against their interests to kill them. Ford believed they were an investment worth looking after, and not to be ill-treated. He devised a Code of Conduct of Slaves, also known as the Plantation survival code: without slaves, crops could not be raised, no income generated to pay off the money borrowed by the planter. This was a society of debt and credit (as Bass says in Chapter 19)

Chapter 12

A description of slave life: planting cotton and tilling over 4 weeks, with the lead tiller whipping them if they lagged behind him. One of the most accurate accounts of the process ever recorded for that time. It also revealed how long they worked – in the field from the crack of dawn until dark, then the cotton had to be weighed (a separate chapter on being beaten if you did not collect a sufficient load) and dried.  Then the slaves had to go and make their dinner for that night and lunch for the following day, before they were able to sleep.

Chapter 15

The benefit of Solomon’s ability to play the violin – it gave him money to buy shoes, and also to witness how other rich plantation masters lived. Christmas time was the only time when slaves were free and did not have to work – for 3, 4, or even 5 days, depending on their master’s decision.

The education Solomon Northup had received from Sabbath School as a boy was at the insistence of his father, himself a freed slave.

Chapter 19

The discussion of slavery between Epps and Bass was another eye-opener for the readers on the attitudes of that time. This is a brilliant chapter which could form the basis for school discussion on the topic today.

The Hare with Amber Eyes: A Hidden Inheritance by Edmund de Waal

The Hare with Amber Eyes: A Hidden Inheritance. Edmund de Waal, Vintage, London, 2011.

Readers’ reactions to the book differed widely according to their past experience, among other things.

The writing is good, although the beginning in particular seems slow-moving and quite hard to get through. The author tends to write in short, terse sentences, with plenty of historic-present-tense verbs. Quite easy to parody, but basically well crafted and sustains interest. An interesting note in the preface explores the author’s reasons or motivations for writing and especially what does not motivate him (p. 15).

It is a book about a journey, or rather journeying: both that of the netsuke collection, and EdW’s own. For the netsuke there is a process of attachment and detachment along the way, being acquired, owned, valued or not valued differently, and passed on to someone else. The author takes you with him on his journey. He does not know where the journey is going to lead him, and neither do you. A totally enjoyable process, even for those who generally like books with a plot. There isn’t one, but by the end of it the reader has acquired a fair amount of meaningful historical information and has been on a journey of discovery; the netsuke are the thread that holds the whole thing together.

The author’s journey takes him notably to Tokyo, Paris, Vienna, Kovecses (Hungary) and Odessa, in the process of journeying into the lives of his family’s past members. It is not a travel book, because of the tremendous sense of place.

It is a book that needs to be re-read to get the most out of it as there is so much to take in. Not only to read again but to study and discuss. It is a fantastic angle on the history, especially the social history, of Europe in the 19th and early 20th century, and Japan in and after World War 2.

Eileen, an artist herself, enjoyed the beautifully crafted writing, and the rich masses of information about different artistic styles and movements in the course of the book. You identify with EdW’s appreciation of this little work of art that is a netsuke, so fine and small, over which a craftsmen had spent ages: they are objets d’art and worth studying for themselves. The value of a thing is all the human effort that has gone into making them. He spends time on the tactile value of the netsuke, to others and to him as a craftsman himself. This was especially interesting to Eileen because of her mother’s belongings: she bought things carefully, individually, planning what she was going to buy and whom for – a Wedgewood dinner-service she wanted her son to have, etc.: “This is beautiful,” she would think, “and I want it for so-and-so…”

Readers can appreciate Edmund de Waal’s sensitivity; this appears to be a tendency inherited from his ancestors and family, and he wants his children to have the netsuke; at the end of the book he installs a vitrine for them at home. All of this is in stark contrast to our current pervasive throw-away culture. The book makes one realise how unpleasant and alienating this culture is; and to want things that can be valued. Carelessness breaks and spoils things; the approach of the artist helps everyone to re-learn a love of things that have value and meaning. Costly and beautiful and material things have a meaning. There are so many reasons for valuing an object: De Waal really explores what happens when people value an object; just as an artist he didn’t want the things he had made to be lost or thrown away.

The story of the netsuke takes us to World War 2 Europe, and how the Jews – in this case the Ephrussi family of Vienna – were forcibly detached from their prized possessions. It is an effective introduction to what used to be called “the Jewish question”: why the Jews were disliked by so many members of their host countries: the book does not explain it so much as exploring it. It was particularly helpful to readers who had already seen Simon Schama’s programmes “The Story of the Jews”, especially the one about the Enlightenment. EdW’s family were assimilated Jews – Charles Ephrussi in 19^th-century Paris; Viktor and Elizabeth in Vienna – they professed no religion, but what mattered was the clan, the family.

Other readers may find that there is no character in the book that they sympathise or can identify with in any way. The human angle is deliberately undeveloped, the relationships are dealt with from a historical angle. One may miss the fleshing-out that a historical-fiction approach would have brought; EdW restricts himself to appreciative history with a minimum of speculation.

A Street Cat Named Bob by James Bowen

A Street Cat Named Bob, James Bowen, Hodder 2012

A fun, easy read, not great literature. The book was actually co-written with Garry Jenkins, who is acknowledged on the inside and at the end of the book, though it doesn’t say this on the cover. The unpretentious style contributes to the sense of honesty that is a keynote of the book, and is one of the things that make it so attractive.

Readers – all of whom live and work in London – learnt a lot about London from this book, and about a different side of London life. The homeless become real people; you started to think about the different causes of homelessness. The same with The Big Issue sellers, and what it’s like for them. One of the bookclubbers has a friend who comes from the part of London in which part of the book is set, which makes it particularly vivid for them. You also learn how The Big Issue scheme works, and about Drug Dependency Units and prescription methadone.

It’s a very good book for young people who are just about to leave home as it has values, and it shows – and explains – clearly, how hopeless doing drugs really is. It would be equally good for people who are not very well educated but need a lift – it’s easy to read, as stated above – and for people who have jobs and money, to make them realise how the other half live. It is really frightening to see the lengths people can go to, in order to numb their feelings and avoid facing reality, avoid facing who they are.

In the book, James comes across as totally honest, without making a song and dance of it. Even when he seems to be on the verge of self-pity, when explaining the effects on him of his parents’ divorce (instability, being bullied at school, and dropping out), or the way that as a busker or Big Issue seller he is ignored by most people and beaten up by a few, he never falls into self-pity. His writing is by turns resigned, common-sensical, and determined. This is more remarkable as he started off, as a teenager, by being very angry indeed, and understandably. Another aspect of his character is the way he instantly falls into panic and fears the very worst, as soon as anything goes wrong – e.g. the times when Bob was frightened and ran away from him, and when he was accused of cheating when selling The Big Issue. A couple of bookclubbers watched a TV interview by Jeremy Vine with James Bowen and Bob. James is jerky and febrile, presumably an aftermath of his addiction; Bob was as cool and composed on screen as he is in the book.

With all of this, nothing in the book is written to give offence, and it is very easy to imagine how it could have been. It is obviously not written for children, but the grittiness of life as a drop-out, addict, busker, and Big Issue seller is depicted realistically enough to bring it home to the reader, yet without making you feel that you are having your nose rubbed in the dirt – although he has been angry, he does not write angrily. Instead, step by step, he dwells on the way his life and attitudes change as he takes in Bob and gets to take responsibility for him – and then as he sees what Bob is doing for him. It is not only the fact that people give far more money to him when Bob is there; it is the fact that James loses his “Harry Potter invisibility cloak” (p. 77), and begins to become a person again, because people look at him, talk to him, and treat him like a human being. And by the end of the book, p. 186, he realises that “Bob brought back my faith in human nature,” because he finds people being kind, going out of their way to help, and keeping their promises.

This book made an excellent contrast with our last read, The Sisters of Sinai – they had a huge amount of money and were extraordinarily well-educated; James had nothing and had a raw deal from the start. It is notable that while Bob alone made him a success as a Big Issue seller, it was the Internet – technology – that made him famous.

Sisters of Sinai, Janet Soskice

Janet Soskice, Sisters of Sinai: How Two Lady Adventurers Found the Hidden Gospels, Vintage Books, 2010.

This book was a chance suggestion that turned out to be one of the most successful books we have read so far in terms of enjoyment, discussion and “reader engagement”. Book-club members did various forms of research on the writer and on the subjects of the book and all of this was brought up at the meeting.

The two “lady adventurers” were the twins Agnes and Margaret Smith of Irvine, Scotland, born on 11^th January 1843. They were brought up as Presbyterians and both of them firmly believed and practised their faith all their lives. In a way their Presbyterian faith could be said to be what drives and inspires – rather even than simply guides – their whole lives. They inherited a large fortune, and as Soskice explains, their Presbyterianism told them that this was for a purpose: they could neither give it away, nor spend it on themselves. So they travelled, researched ancient manuscripts, endowed  a Presbyterian college (Westminster College) at Cambridge, and started the Boys’ Brigade.

So many puzzling features of their lives now made sense. Their money, for instance – never unwelcome, but what was it for? Giving it all away, St Francis-like, had never been a Presbyterian option. Riches (especially riches, like theirs, acquired almost accidentally) must be intended to play some part in the providential plan.

Now it was clear that they did have vocations, and ones for which their life experiences entirely suited them. (p. 252)

Some people found the book rather heavy going at the beginning, but soon became engrossed in the story. Agnes and Margaret’s father (their mother died two weeks after they were born) promised them that for every new language they learned, he would take them to visit the country where it was spoken. They made the most of their amazing gift for languages (and their capacity for serious study and hard work) to learn modern European languages and then went on to more exotic ones, Greek, Arabic, Syriac, and more. It was notable that they had no mother to teach them a woman’s place in the nineteenth-century world, i.e. to hold them back and limit their horizons...

The book covers the whole of their lives, but dwells especially on their journeys to St Catherine’s Monastery in the Sinai Desert. They went there because they had been told by a friendly professor at Cambridge (where they had settled) that he had visited the monastery and seen a manuscript there which might prove to be extremely important, but had been unable to examine it. While they were there, Agnes discovered a battered old chunk of pages all stuck together, and realised it was a palimpsest of the Bible – a palimpsest being a manuscript whose original writing had been scraped or washed off and something else written on top. With careful examination and sometimes special treatment, the original writing can be made out. It turned out to be an extraordinarily early manuscript of the whole Bible in Syriac. Agnes and Margaret, helped by the monk-librarian, started to photograph the whole manuscript page by page. They had to come back a year later, this time accompanied by more scholars, to complete the work of making a good copy of the whole manuscript.

The whole story is fascinating and it takes a book to do it full justice. In addition, we hear about the travelling conditions for European visitors in the Middle East at that time. The story is told with no dramatization, but very clearly and vividly, and the difficulties they had to tackle all the way are very real, so much so that it is quite distressing. They quickly got used to riding on camels – and how the sisters got on with the Greek Orthodox monks. They were of course totally ignorant of this form of religion, and one Sunday when the monks were going by in solemn procession Agnes thought that she ought to shake hands with the Prior. Read the episode on p. 139! They were, nevertheless, open-minded and respectful despite their complete inability to understand. 

Another interesting feature that comes up in this extremely rich and eventful story is the terrible way that some academics treated others – nothing has changed in this respect, alas! Obviously there were also some who were kind, generous and helpful, though. Plus the atrocious plundering of manuscripts that went on – again, plus ça change...

As for the twins themselves, there is a lot more we would like to know about them but don’t, simply because the twins didn’t write about it. You get a real sense of their self-restraint, privacy, – from their point of view even decency – in that they don’t let it all hang out, or go in for either navel-gazing or self-advertising. That itself tells you a lot about them.