Being Mortal: Medicine and What Matters in the End

Review ebook Being Mortal: Medicine and What Matters in the End

(Added a link – 4/18/15 – at bottom) In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality and created a new difficulty for mankind: how to die. Being Mortal is completely irrelevant for any readers who do not have elderly relations, do not know anyone who is old or in failing health, and do not themselves expect to become old. Otherwise, this is must-read stuff. Life may be a journey, but all our roads, however lon (Added a link – 4/18/15 – at bottom) In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality and created a new difficulty for mankind: how to die. Being Mortal is completely irrelevant for any readers who do not have elderly relations, do not know anyone who is old or in failing health, and do not themselves expect to become old. Otherwise, this is must-read stuff. Life may be a journey, but all our roads, however long or short, whether express, local or HOV, whether traversed by foot, burro, bus, SUV, monster truck or Star Trek transporter, converge on the same destination, and the quality of those last few miles is something we should all be concerned about. Old age is not a battle. Old age is a massacre. Atul Gawande, as a doctor, has had considerable exposure to issues of death and dying, but when his father was diagnosed with brain cancer, Gawande was motivated to look into how end of life care was being handled across the board. Being Mortal is the distillation of what he learned.

Atul Gawande – photo by Aubrey Calo – From Gawande’s site

What we have today is the medicalization of old age. It has not always been thus. Instead of embracing the circle of life, we have bent and twisted it until it looks like a Möbius strip. Facing the fact that we are all going to die is certainly not a fun notion, but neither is believing we can extend our so-called lives indefinitely. There really is such a thing as quality of life, and probably should be a thing called quality of death as well. … hope is not a plan, and in fact we find from our trials that we are literally inflicting therapies on people that shorten their lives and increase their suffering, out of an inability to come to good decisions. – Gawande – from the Frontline segmentPeople have priorities besides just living longer.

The percentage of the population that is elderly is rising dramatically as boomers enter their (our) golden years. So how is the medical profession preparing to meet the booming demand for geriatric care? With the same gusto as a Republican legislature faced with a crumbling infrastructure. They are cutting back. I picture a cinematic bandit with a white coat under his bandolier, “We doan need no steenking geriatricians.” The reality is not far from this. Although the elderly population is growing rapidly, the number of certified geriatricians the medical profession has put in practice has actually fallen in the United States by 25 percent between 1996 and 2010…Partly, this has to do with money–incomes in geriatrics and adult primary care are among the lowest in medicine. And partly, whether we admit it or not, a lot of doctors don’t like taking care of the elderly. Gawande tracks the history of late-life care from the poorhouse to the hospital to the nursing home to the range of options currently available, providing information of the benefits and shortfalls of each. Assisted care comes in for a lot of attention. policy planners assumed that establishing a pension system would end poorhouses, but the problem did not go away. In America, in the years following the passage of the Social Security Act of 1935, the number of elderly in poorhouses refused to drop. States moved to close them but found they could not. The reason old people wound up in poorhouses, it turned out, was not just that they didn’t have money to pay for a home. They were there because they’d become too frail, sick, feeble, senile, or broken down to take care of themselves anymore, and they had nowhere else to turn for help. Pensions provided a way of allowing the elderly to manage independently as long as possible in their retirement years. But pensions hadn’t provided a plan for that final, infirm stage of mortal life. There comes a point at which one passes from being elderly to being frail and the range of options narrows. Gawande asks, “What does it mean to be good at taking care of people whose problems we cannot fix?” When does the need for safety leap past a person’s need for independence? There are various levels of care offered at different sorts of facilities. Some people can remain at home for a long time if they have a bit of help. Nursing homes are heavily medical, assisted care facilities more independence oriented. And there are plenty of variations on each. Gawande looks at several variations on assisted living facilities, noting the strengths and weaknesses. I found this extremely interesting. He also looks at some techniques that can make assisted living more tolerable, adding flora and fauna for residents to take care of for example, things like different sorts of physical layouts. One of these reminded me very much of my daughter’s erstwhile college dorm setup. Point being that there is a spectrum and beginning from understanding the patient/resident needs and desires in the context of physical and medical limitations can inform the choices to be made. All too often these decisions are made without considering the impact on or getting input from the person most affected.

Being Mortal looks at trends in the impact of using all available means to keep people alive, and how that affects someone’s final days. When is the right time to stop treatment? How much is too much? When is the right time to die? It used to be that, when it was time, one’s final days were spent at home, with family. These days, they are likelier to be spent in an institution of some sort, and as likely as not, entail the patient being hooked up to sundry tubes, wires and flashing, beeping devices. It is important to identify exactly what it is that a person wants, or fears most, as a basis for decision-making. If your needs are minimal it speaks to one set of decisions. If your needs are more substantial, it speaks to another. One person said that as long as he could watch football and eat chocolate ice cream, life would be worth living. (There is no way he is a Jets fan) Others have a more extensive list of must-haves in order to make life worth living. It does lead one to consider what your list might include. For me, watching baseball would definitely figure in. Being able to read and write, to communicate would be necessary. What if you couldn’t clean yourself? What if you could only have food through tubes? How much pain could you live with, and what measures would be acceptable to ameliorate it? What would keeping me alive cost? And how much is too much? All these questions figure into deciding the appropriate level of care. One fascinating section here had to do with hospice care, which need not take place in a hospice building. That was news to me. And it is a revelation how such care impacts patients.

One of the significant points of the book is that planning is paramount. Have those difficult conversations. Talk about what you want for yourself, if your care is at issue, or what your parent/friend/spouse/relation wants well before one is in a crisis situation. It may be uncomfortable, but it is hugely important. In fact, this book is hugely important.

Being Mortal offers not just a fascinating look at the history of late life care and living options, it not only offers a review of what is happening out there in the field of facilities for the frail and in the theories of how to approach late life care, it not only offers sage advice on planning for eventualities that we must all face sooner or later, it does all these things with humor and clarity, the bookish equivalent of an excellent bed-side manner. It is a fast read, too, useful if time is short. I would strongly suggest adding Gawande’s book to your bucket list, before…you know… it gets kicked. This is must-read stuff.

Published – 10/7/2014

Review first posted – 2/13/15

=============================EXTRA STUFF

Links to the author’s personal, Twitter and FB pages

The book was the basis for a Frontline episode, which is excellent

Here are the articles Gawande wrote as a New Yorker staff writer

An interview with Gawande from Modern Health Care

Interview in Mother Jones magazine

4/18/15 – GR friend Vaidya sent along a link to a wonderful January 2015 NY Times opinion piece by Tim Kreider, You Are Going to Die, on facing what lies ahead. Worth a look. Thanks, V.

5/3/15 – An interesting Op-Ed on futility care

January 23, 2017 – The New Yorker Magazine – Gawande article on the benefits of investment in incremental care in light of investments in heroic intervention – interesting stuff – The Heroism of Incremental Care (The title in the print magazine was Tell Me Where It Hurts)

January 3, 2020 – an update on the state of growth (or lack of same) in the field of geriatricics – Older People Need Geriatricians. Where Will They Come From? – by Paula Span

…more