Not the cheeriest title in the world, for not the cheeriest subject, but of course for now, perhaps until 3-D printers get better, inevitable that all of us living creatures will come to die. Death of course has changed, as has pain or other phenomenon of life, as time and medicine has progressed. The author indeed notes this to start, comparing his grandmother's death by serial stroke at home to the modern stainless-steel dominated hospital ward room where we seem to die most often in the Western World. Retirement isn't what it used to be either. Whereas we couldn't crack open chests of 90 year olds to repair their heart valves just a few years ago, now we can use Da Vinci machines and do just that; however, they might die soon enough after that, or outlive their pensions and health and go into after-retirement frail care. As Kubler-Ross noted, we used to come home from school and find grandma dead on the hall carpet, but now, death is remote, clinical, on some machine, away from the familiar, although most of us would rather die at home.
Woody Allen said he didn't worry about death: he just didn't want to be there when it happened, and so as with most of us, we do not prepare for death unless we absolutely have to, and that might be too late. Surviving a heart attack of any cause within a hospital is a very risky event, outside, virtually deathly. And so Eastwood MD sets about to get us accustomed to the need to prep for doomsday, our own personal one at least. If this is a narrative, then his intention is to get us to own the personal narrative of our death. End of life decisions, assisted suicide, palliative care, quality of life vs survival, heroic interventions and who gives the go ahead for that, and how would families conflict each other in deciding for you when you are unable to guide that from your intubated self.
Determinants of ill health are discussed, with an emphasis on new killers, such as opioids and suicide, that are reducing the life span of white, middle class Americans. Despite assertions of some presidents, the USA is 42nd in the world in terms of life expectancy, 10 years or so behind Monaco, a place few Americans could find on a map. Most European countries are ahead of the USA, so are Canada and the UK, and way up next to Monaco are Singapore and Japan. Despite our program to die which is based in our cells, health care, or at least available health care is the issue in the USA compared to countries like my own, Australia, which have universal free unlimited no-gap health care from cradle to grave. In developing countries, the availability of fresh water and sewage might make a bigger difference, as it did in the West centuries ago.
By now, 20 pages or so into the book, you will realize that none of what you will read in this book is about the emotional load of impending death. It is, rather, all about the arrangements you might want to make to address the medicolegal, ethical, and other more technical aspects of your departure, and avoid the complications around the matter of your dying, rather than what to do to prepare yourself for the switching off of everything, forever.
Certainly, palliative care has its ins and outs, including a lot of technical options, which this book covers by use of vignettes, about what is appropriate care and what may be inappropriate. At the same time, or soon after, he addresses the issue of suicide, either that of physician-assisted, or that of voluntarily stopping food and drink. Whatever the case, the book's underlying principle is that of preserving your autonomy as death looms.
What is clear as well is that the appointment of a health care proxy is necessary to sometimes forestall a conflict in the family, where a partner/spouse may express the dying patient's wishes as they know it, but be contradicted by others in the family, pitting one against the other over the body of the person they profess to love and know well enough to predict their wishes with certainly. The slippery slope of illness can rapidly push a patient beyond capacity, and therefore result in others trying to deduce what their wishes might have been but for the confusion that now reigns. Whilst prior deaths in history were at home, the complications of the life-saving or sustaining devices in the hospital may now supersede, leading most of use to die in a hospital setting. Orders for the physician or similar carer will need to be precise if family confusion and decisional stress are to be avoided.
So: quality of life so sustained can be questionable, and more so, the cost of prolonging live by heroic medical means can be crippling. In a country like the USA, this is true, less so in the personal sense for countries like my own, or another country with free universal health care, but here the burden falls to the state, and at the end of life, is considerable. Quality of life, as with autonomy, is a matter of personal perception, and so again, the burden should fall to the patient to stipulate what that is for them.
Death of course is neither simple nor complex, but that we make it so: what we do know is that for now, until 3-D printers or AI or some phenomenon in genetic therapy changes all that, we are stuck with a probable decline and a certain death. The preparation this book focuses on is the practical and vexing way we exit, given the exigencies of the modern medical and social world, and how to manage the sticky bits. These would include contemplating or simulating in your head how you are most likely to go out, e.g. heart attack or similar way to mum or dad; what in your case does quality of life mean and what are the limits to that which might require some plug-pulling. It is most necessary to appoint those proxies to make decisions for you when you cannot or are judged to be incompetent.
He does leave us with a tiny bit of insight about the emotional side, suggesting we revisit elements that made us smile, nostalgically, knowing we will not go there again, but otherwise he sticks to the practical as an M.D. should.
I know there are things on the internet about what dying patients have regretted doing or not doing, and these are interesting, but the vexing problem about death, from Eastwood's point of view, is not what your death will do to you during the process of dying, not directly anyway, but what it will do to those who are left behind to clean up the legal, ethical, moral mess. This all presumes we are to die via some process, perhaps a bit prolonged, rather than hit by a meteorite or an active shooter, whichever is more remote. Death is more of a process in the modern age, involving others, and not just finding grandmother lying on the carpet, where after she fades away in her own bed. As with most things anxious, the time to work out what you would do is best planned, and not as a default strategy when all is emotive and chaotic, with compelling demands on you and the family which are often at odds with each other. For this, Eastwood has the manual to guide the journey, but preferably, well in advance.
© 2019 Roy Sugarman
Roy Sugarman PhD, Director: Applied Neuroscience, Performance Innovation Team, Team EXOS, Az USA