aPriL does feral sometimes 's Reviews > Being Mortal: Medicine and What Matters in the End

Many people avoid the subject of what should be done when the elders in their family become too frail or sick or demented to live by themselves or if a family member, whether old or young, is told they have a fatal disease such as cancer. When such news happens, and it will happen, the fraught, sometimes guilty, sometimes extremely distressed, yelling and arguing which follows the diagnosis can produce wrong incompetent rushed decisions that can lead to lifelong regrets and self-recriminations which will hurt everyone involved forever.

Before those emotional conversations occur, I strongly recommend reading 'Being Mortal'. It may literally save you decades of horrific guilt-ridden recollections about how things worked out for a loved one who died. I think I need to emphasize the book does NOT use an approach of standardized lists or a how-to or for-dummies short descriptive set of procedures which should be followed. Instead, Dr. Atul Gawande writes beautifully and sensitively, without sentimentality, of his own observations about his patients and of his personal experience when his father died.

This is a grownup man writing about real situations. The case histories he has included may cover every question the reader may have, but while he demonstrates what people should be prepared for, he makes it clear every person has to decide how to proceed for themselves. His primary conclusion is that the person who is dying not only ought to be allowed to provide the family with guidance, even if indirectly, the family should try to accommodate as much as possible what those wishes are, even if the dying one cannot speak rationally, even if such accommodations shorten one’s life. This is, in my opinion, the right procedure to take. There is no question that a certain amount of personal toughness and a giving up of irrational hopes is required by everyone involved. The one who is dying needs to be cleaned and fed despite whatever wishes they may have, but if the family insists on a surgical procedure (for example, cutting out a cancer, or a third round of chemo and radiation) which provides no benefit of lengthening life expectancy, this is plainly insane and it cries out for some sort of counseling. Unfortunately, patients often cannot depend on their doctors to speak plainly, since as Dr. Gawande makes clear, doctors do not get much training, if any, on telling patients they have a disease which is killing them or that they have aged out of possible medical solutions.

One part of the issue is often the person involved will not discuss what should happen if they are dying or they ask for what is impossible to accommodate. These will not be easy conversations. However, there comes a point when talking it through cannot be avoided. This book definitely helps in what can be a confusing and distressing time. It offers many ways to open the discussion and what sort of things should be discussed. That in itself makes the book an essential read.

However, Death is not as terrible as living ‘independently’ for your last five years. Independence is hellish for many of my neighbors, but there is nothing on earth which will convince them they should have elderly care. I see many visits by adult children who vainly try to convince their parents they need assistance. What I see most often is service calls to cable companies, plumbers, electricians, neighbors, police and family members for help with household electronics and fixtures which inexplicably cannot be made to perform by the older person.

I live in a park of trailer homes which are primarily sold to those who are of age 65+. When we moved here, I actually was too young - I did not meet the age set as minimum (my husband met the qualifications). The cul-de-sac we moved into had mostly empty houses. We didn't know it at the time, but there had been kind of a 'die-off'. It seems most of the former owners were in their 60's when they had bought these trailers - like us - and all had aged to their 80's together. At that point, they all began to 'fail'. Now, I am seeing it happen again before my eyes, since I am one of the youngest owners and most of the people who bought in when we did are now turning 80.

The number one issue I have been seeing is the complete denial that aging problems are multiplying beyond one's personal capabilities. It is not so much they do not have access to care, it is more that they refuse care. In my state, there are almost no remedies to legally force an elderly person to accept care if they are able to prove under a quick brief test (conversation, mostly) they can answer questions logically. This problem of a lack of acceptance of personal frailty is covered by Dr. Gawande in “Being Mortal’ too. Based on the people in my senior park, I’d say it is the predominant problem that younger family members will face when trying to discuss their elder’s growing difficulties in living alone. This issue alone should put this book on everyone’s ‘must read’ stack.

I walk every day so I have met everybody in my neighborhood. I take fewer than four medications a day (a criteria for impairment) so, based on that, I’d have to conclude that I am among the healthiest here.

Most of these folks have trouble walking now for differing reasons (most of them were walking when I moved here ten years ago) and all of them take many many medications. I have watched them deteriorate from walking strong initially, standing straight on firm legs, to now being bent over and walking with unsteady steps, tottering in a very scary manner, obviously needing walkers.

The interiors of houses inevitably become dirtier and dirtier from a lack of cleaning and a growing number of various types of spills and falls and accidents. Seniors lose their abilities to taste, smell, hear, walk, and see. Many cannot hear the birds chirp, or the wind in the trees. I have caught some of my elderly neighbors eating spoiled food. Some have required me to pull them out of chairs from which only a year ago they were able to push themselves up. Bathing is impossible now for most without aids, especially shower chairs. The regular toilet seats are being replaced by puffy, inches-thick seats from which my feet almost dangle above the floor (I now try to avoid using their bathrooms). Others have become incapable of typing or operating a computer mouse because of deteriorating spacial processing and/or weakening, shaking hands. I saw that a neighbor no longer possessed strength to hold a book in her hands.

Many are clearly developing various degrees of dementia. They all are finding the ability to follow instructions harder, so the continuous updates of technology, especially cell phones and cable TV, are requiring a growing reliance on service calls. A few of my neighbors are requesting my husband to visit three or more times a week to fix whatever they have messed up on their remotes, having punched so many wrong buttons the programming on their remotes no longer works. There were only four people besides myself who were able to use computers ten years ago; of those, one is now completely unable to make sense of the monitor screen or Windows operating system any longer.

At least once a month a firetruck and ambulance pulls up somewhere in my park. I have seen several of my nearby neighbors have a firetruck and ambulance pull up to their houses near me, needing medics to put them back on their feet after falls that neither they or their spouses could get up from. I saw one of my neighbors having CPR performed on him. I saw one of my neighbors set herself on fire trying to cook on her stove, shakily picking up a pot while dipping her sleeve into another hot burner. I saw two people burn their hands taking objects from an oven, on two separate occasions, because they each forgot that stuff baked in an oven is hot. Four of my neighbors have died or been moved to Hospice.

At first, I was as startled by all of this as a deer in headlights. It didn’t seem possible this stuff was happening all around me to people I knew.

Old people often fight off all advice and families by tooth and nail, yet the price of leaving them in their own homes could be a shortened life or a serious injury. People dying of a deadly disease may insist on operation after operation, experimental procedure after procedure trying to find a cure. On whose authority should adult care be decided - the elderly or dying adults? The families? The state? Who makes the call enough is enough?

Frankly, I'm now beyond being amazed at how much 'autonomy and independence' society continues to allow the elderly infirm and demented if they refuse to recognize their infirmities. My state is now going to what they call 'Silver Alerts' when old people have disappeared for a few days from their house and someone has noticed. That seems to be the extent of care that my state can provide if someone past 65 refuses help.

What is frightening me is that no one can ‘make’ people stop trying to live as if they were physically as adept as they were ten years ago if they clearly can no longer live unaided, but they are refusing to accept their deficiencies or weaknesses are causing life-threatening incidents. There have been several emergency calls to police caused by various serious, bone-breaking falls, faints and cuts, as I mentioned earlier, but I have learned there is no mechanism in place to force compliance with medical care if the adult has no wish for professional care. Families only have the power of speech and intimidation, unless they resort to legal mechanisms which can take months, when they can be used at all.

I used to think, well, these elderly folks are adults and have rights to live as they please, and Dr. Gawande also argues this viewpoint to some degree. But after having seen the urine and poop everywhere in bathrooms bedrooms and living rooms, not cleaned until a younger person happens to visit whenever, or seeing mostly blind (cataracts, retina issues) adults eat rotten food they can't taste or smell, or seeing adults catch themselves on fire or burn their hands on stoves and ovens because they forgot that things are hot, or my closest friend here, who died this year, walking about on sharp stones barefoot in a bathrobe, when she had always dressed up, or people who repeat the same story in EVERY conversation and visit from neighbors, or my neighbor who fell in the bathroom and lay there for 4 hours calling for her husband, who couldn't hear her because he is almost completely deaf, so when he finally missed her, it took him another 20 minutes to walk 15 feet to the bathroom because he has dizzy issues and must use a walker that he is too weak to use well, after struggling out of his chair, and after finding her calling 911 because it needed three young men to lift her despite her small frame....etc etc etc., I don’t know anymore what the answers are. Yet, many elder-care institutions are nothing but prison cells, and the costs to insurance companies, families, personal savings and taxpayers are ruinous.

I have learned, for example, that a drug-addicted alcoholic 68-year-old woman, bent over now, needing a walker, who broke her hip last year, could hold off the police, fire dept. medics, social service workers and her family for two weeks while she lay in her own filth immobile on her couch! She could answer questions coherently. It wasn't until in a moment of uncertainty she agreed to go to the hospital she finally was taken to have her hip operated on. However, she screamed about having changed her mind all the way to the ambulance! She created so much attitude while in the hospital and so much resistance, that when she checked herself out, called a cab, and moved back into her trailer, people did not try very hard to talk her out of it. We neighbors cleaned her house, but we have no power whatsoever to help her, primarily because she quickly accuses everyone of stealing and abuse. She picks up temporary home helpers by picking them up from grocery store parking lots, and they scare the rest of us. She had a lawsuit against a grocery store because she fell, but she created such misery for her lawyer from dementia-induced conversations, he dropped her case. She takes a cab to a casino regularly, and falls asleep at the slot machines. The employees don't touch her or wake her. She has stayed the night with her head propped up on a machine. (Sometimes she calls my husband to drive her home, which is how we know.) She has two dogs. They poop all over the inside of her house. Occasionally, someone will scoop it up, when they visit, when she asks someone to do it.

This is the worst case so far where I live, but not the only terrible one I see occurring to lesser degrees all around me.

Dr. Gawande makes a good case that the reason elderly people resist being placed in nursing homes is that many institutions for the aged and infirm are too regimented and rule-bound, and rely heavily on stupefying drugs, more for the benefit of warehousing adults than actually caring for elderly people. He argues for providing care which takes the adult individual’s previous life into consideration, making allowances for their desires as much as what is necessary to keeping them alive. Being kept alive is a horror if all pleasure from being alive is erased.

Elderly people, including those with dementia, should be allowed those things which make life worth living - pleasant surroundings, reasonable privacy, pets, personal furniture, plants, etc. If they wish to sleep all day and watch TV all night, it should be permitted. A regimented activity-filled day without any input from the resident is one of the causes behind a lot of the elderly fighting off any efforts to get them out of their increasingly dangerous personal homes.

I'm 100% behind assisted suicide, by the way. It should be obvious to you, gentle reader, that Aging does not mean a quick romantic death, like that often imagined of a healthy adult dropping dead or dying in their sleep after a vigorous happy day, but instead is a protracted, often painful, ugly, ignominious and slow-wasting process. The best health care can't give an aging person back their abilities to walk, hold a book, or clean their own bodies. The person often is aware of their smelly decrepitude, mental losses and physical incapacity, and is ashamed. Here in my state, there has to be two doctors to sign off on giving drugs to die and there must be an estimation of six months to live.

After seeing how old age robs the person of good health, I am alternatively terrified and depressed. I have been seeing typical clues among my neighbors of oncoming death - such as not understanding what is on the TV, but staring at it 24/7, falling on the floor but being content to not call for help despite hours passing, eating spoiled food because the person no longer can judge on any level the condition of their groceries, continual body-waste accidents in one's chair several times a week without asking for help, missing meds even while they insist they took them, trying to walk around inappropriately dressed or attempting to drive, but instead ending up sitting in the car trying to move levers or get the key in the slot, etc. Reading is a lost art to these folks!

I suspect almost no elderly person who had a house will ever completely agree that they needed to be in an assisted living or nursing home. I suspect an older family member who has been installed in an institution will never fully accept that they no longer are competent. I think those of you who are anticipating such a struggle with their own elderly family members (or someone young who has been told they have a life-threatening disease) should definitely read this book. ‘Being Mortal’ will help readers be firmer and more knowing what to expect in that conversation, and be more knowledgeable in what to look for while shopping for a place of elderly care, or for medical care for someone who actually cannot be helped by another operation or new drug despite what the doctor offers.


We treat pet animals better, I think, generally. In America, our ethics are a bit all over the map on this, mine too. This book not only sheds some light on the problems, it also offers some methodology to help cut through the misery and confusion. Ultimately, resources and family input, along with the involved adult must be consulted and information synthesized. No one will be entirely happy with the result, in my opinion. But until the Fountain of Youth is discovered, we are all going to have to accept compromises and the despair of no happy endings, sometimes, of the person we are trying to help.

Something which helps me is reciting, “where you have no power, there is no responsibility.” I think it is VERY helpful in deciding what you can actually do about terrible situations.