Atul Gawande, Being Mortal (London: Profile Books, 2015)

I was lent the book by a medical friend, and after reading half I bought my own copy. It’s the sort of book you want to keep so you can refer back to it. As my PhD will finish by exploring the assisted dying  issue, I need to start learning about the issues that surround dying. This book helped to inform my own thinking, and introduced some new concepts. It also informed my thinking about ageing, and how people might want to live in the final stages of their lives. This has little to do with my studies, and a lot to do with real life. Whether we are old, or helping elderly parents, this book has practical advice and confronts some difficult issues.

Gawande is a doctor, and he spends some time explaining how in old age, it is very important to keep your feet healthy. People are not able to live independently if they cannot walk. A fall in an older person is dangerous—brittle bones break more easily, and the space inside the skull where the brain has shrunk means it gets a nasty jolt in a fall, which can cause all sorts of problems. Therefore, balance is important, and good balance relies on good feet. If someone is unable to properly care for their feet, they are likely to develop problems with balance. [Note to future self: Do some simple balance exercises every day, and keep lifting feet to where I can touch them. ‘Use it or lose it.’]

The first half of the book deals with the ageing process, and how western societies treat their old and infirm. Gawande is American, with Indian heritage, and his comparison of the two cultures was very interesting. Whilst the ‘traditional Indian’ setting of an elderly person living with the extended family, being helped through their old age by younger members sounds idyllic, Gawande is honest about the problems this can entail. Different problems to our western traditions, but still problems. He then discusses the situation in the US.

One topic he discusses are nursing homes. He doesn’t rate them very highly, and compares them to prisons! (p.73) He explains how nursing homes grew from the need in 1954 to provide hospital beds for the elderly when hospitals were too full—so their medical care was transferred to a purpose-designed home. (p.71.) They were all about medical needs, keeping the patients physically safe, and were run to be clean, efficient and safe. Then, in the 1980s, Keren Wilson tried to build a better model, and built an ‘assisted living’ community—where the aim was to allow elderly people to live independently, with the physical help that they needed. They had locks on their doors, privacy, and autonomy. If they wanted to wear pyjamas all day, or eat food that was bad for them, they could.

This led to the assisted living homes we have today, which tend to be a compromise between the two models. He makes the point that homes for the elderly advertise that they are safe and clean—not that the residents can make their own choices. This is because the homes tend to be chosen by the children, not the elderly—and children want their parents to be safe and clean. He writes that this is because ‘it’s often precisely the parents’ cantankerousness and obstinacy about the choices they make that drive children to bring them on the tour to begin with.’ (p.106) He also remarks that this is partly the fault of the parents, ‘because they disperse the decision making to their children . . . It’s sort of like, “Well you’re in charge now.”’(p.106.) [Note to future self: Don’t dump decisions on my children if I am capable of making them myself.]

He does also describe some excellent care homes, some of which introduce things like plants, or animals, or combine with a school so the residents can help the children. He discusses the motivation for living, and that in the end, being ‘safe’ is not enough. People need a role, something beyond themselves, a purpose. Otherwise it seems they disappear inside of themselves and lose the enthusiasm for life. He writes that ‘death rates can be traced to the fundamental human need for a reason to live.’ (p.123.) He discusses Maslow’s hierarchy of needs (the idea that physiological needs—food and water—are more important that safety, which is more important than love/friendship, which is more important than self-esteem, which is more important than self-actualisation.) Gawande considers that above ‘self-actualisation’ is the need for transcendence—the need to go beyond ourselves and help other living creatures. [Note to future self: Find someone/thing to care for.]

Gawande states that the problem, as he sees it, is that we have put issues of life and death with the medics—and they are not necessarily equipped for this. He describes ‘a still unresolved argument about what the function of medicine really is’. (p.187.)[This is my own view too—I think death should be left to philosophers and theologians, not medical professionals.]

Another modern problem—which affects the States more than the UK is the availability of treatments and the way that insurance works. Therefore medics no longer have to question whether a treatment is ‘worth it,’ either financially or in terms of benefit to the patient. If it’s available, and a patient wants it, then they check the insurance company will pay for it and the patient undergoes the treatment. This has a parallel in the UK with pet medical insurance. If our pets are insured, and if the vet suggests a treatment, it is very hard to step back from this, to take a holistic view and decide whether the treatment is actually in the best interests of the pet. We love our pets, we don’t want to lose them—but sometimes I think they suffer more due to invasive treatments than if we just made them comfortable and helped them to die peacefully. Gawande questions whether most of the money spent in the last months of life actually benefits anyone. He suggests this is particularly true at the very end, when patients are hooked up to expensive machines, their lives prolonged by a few days but with no ability to ‘die a good death.’ (My expression.) Unable to say goodbye, or come to terms with what is happening to them, their last moments are reduced to being a patient. He says that people who are dying have priorities other than living for an extra day or two, and ‘technological medical care has utterly failed to meet these needs’ and the financial cost is massive. (p.155.) He suggests that by putting our faith in modern medicine so completely, we have forgotten ‘how to die.’ (p.158.) [Note to future self: Decide what is important to me in the present.]

Gawande is a great believer in palliative care—help to live your final days as well as you can, rather than suffering intrusive uncomfortable treatments trying to extend life by a few more months. He discusses this in the setting of his own father’s death, which makes the discussion both personal and honest. It’s much easier to have a theory about death when it doesn’t touch you. He also lists some questions—difficult to ask ones—which enable families to help their relatives to die how they want to die. This involves asking the person what they fear most about their diagnosis, and what they want the most. (It might be to continue being able to eat, rather than to have the longest possible life!) He also suggests asking what the person would like in an emergency—do they want to have their heart restarted? Do they want aggressive treatments (such as being on a ventilator)? If the answers are known before the emergency happens, then people are able to make the right choices in a crisis situation. He talks about what the aim should be for a terminally ill person, saying it is not about ‘a good death, but a good life to the very end.’ (p. 245.) For Gawande, this means that assisted dying would be a rarity, not the norm—because so much can be done to help a person optimise their last few days, and very few conditions cannot be managed with drugs. [Note to future self: Communicate my wishes to my children, don’t make them have to guess.]

I am still unsure of my own view about assisted dying, so it’s helpful to hear what others think. I found Gawandes book to be a helpful resource, and I value his insight into the issues surrounding old age and the end of life. Now, don’t forget to take care of your feet!
Thanks for reading.
Take care.
Love, Anne x