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.