Early on Gawande captures the decision that we will all make (ideally) before we grow old: “how to make life worth living when we’re weak and frail and can’t fend for ourselves anymore.” More specifically, he seeks to find out “how [can] people age without having to choose between neglect and institutionalization?” Notably, he acknowledges that the challenge to answering these questions is largely a structural one: “How can we build a health care system that will actually help people achieve what’s most important to them at the end of their lives” instead of the current medical status quo and culture that is is built on chasing the long shot--the “medical equivalent of lottery tickets”--on treatments that likely won’t work but near nothing on preparing the patients for the certainty that the treatments won’t work. Most frightening is his conclusion that for the majority of the medical community “hope is not a plan, but it is our plan.”
Unfortunately not everyone works through all this thoughtfully for themselves, let alone with aging loved ones (i.e., parents, grandparents etc.) early enough or often enough. “Being Mortal: Medicine and What Matters in the End” seeks to fill that gap with not only a lifetime of applicable medical anecdotes and history but also the wisdom gleaned through the surgeon author’s own personal and professional struggles with aging patients, friends and family members.
With the largest living generation (baby boomers) entering into the later stages of life this book is an essential must-read for nearly everyone. “Being Mortal” is a quick read that will challenge your assumptions and understandings about how the medical community treats (and largely fails to treat) its patients as they work through difficult decisions that will directly affect their own quality of life when it matters most.
Most useful are a series of questions that he recommends that families work through together
as loved ones get into their latter years. It's important to revisit these questions since my 50 year-old self might have different answers than my 75 year-old self.
If one’s health is compromised by illness he highlights these questions to consider:
He offers these guidelines for doctors who have bad news to discuss with patients
Ultimately, we want doctors who take time to understand what we care about most which in some cases may be to leave well enough alone. “Whatever the limits and travails we face, we want to retain the autonomy--the freedom--to be the authors of our lives.” A stated objective of hospice care is worth meditating on: “[the] ultimate goal is not a good death but a good life to the very end.”
Key Quotes:
77 what the goal should be: “how to make life worth living when we’re weak and frail and
can’t fend for ourselves anymore
77 was also the goal of Keren Brown Wilson, one of the originators of the assisted
living concept
99 With limited time what people mainly want is comfort and companionship
103 the big question: how do people age without having to choose between neglect and
institutionalization
105 What’s missing from many nursing homes and assisted living facilities is the complete
ignorance of the staff to what connections and joys matter most to the
occupants/patients --and to figure out how to sustain them.
109 the medical system (particularly nursing homes) are designed for safety “but empty of
anything [its patients] care about.”
112 “I was confusing care with treatment.” mistake of young doctor taking over a nursing
home.
116 the three plagues of nursing life: boredom, loneliness, and helplessness
120 “Culture strangles innovation in the crib.”
122/272 Dr. Thomas wrote about his experience bringing animals into his nursing home:
“A Life Worth Living”
139 Central belief of these great facilities: you don’t need to sacrifice your autonomy just because you need help in your life.
140 “Whatever the limits and travails we face, we want to retain the autonomy--the freedom--to be the authors of our lives.”
142 The Pioneer Network--a club dedicated to the reinvention of Elder Care.
https://www.pioneernetwork.net/
155 “How can we build a health care system that will actually help people achieve what’s most important to them at the end of their lives.” Author’s central question.
161 Ordinary medicine vs. hospice care: sacrificing the quality of your existence now for the possibility of gaining time later vs. efforts to have the fullest possible lives right now by focusing on different objectives.
171 Our medical system and culture is built on chasing the long shot--he calls it the “long tail”--the “medical equivalent of lottery tickets”--on treatments that likely won’t work but near nothing on preparing the patients for the certainty that the treatments won’t work.
172 “Hope is not a plan, but it is our plan.”
177 most doctors don’t discuss end of life care with cancer patients (only ⅓). Most of the ⅓ that did, enrolled in hospice care and had a more enjoyable end of life AND their families suffered less cases of depression
178 Cancer patients who saw a palliative care specialist, stopped chemo earlier, entered hospice earlier and lived 25% longer than those who didn’t!
179 4 central questions to ask early and throughout later years--at this time:
Do you want to be resuscitated if your heart stops?
Do you want aggressive treatments such as intubation and mechanical ventilation?
Do you want antibiotics?
Do you want tube or intravenous feeding if you can’t eat on your own?
180 Just having the above discussion brought one hospital’s end of life costs down to half the national average.
182 With terminal illness, most doctors focus on what people want on the treatment and associated options, palliative care specialists help patients to focus on the overall process, their anxieties, their own mortality, and the limits of medicine. There are general rules to do this:
You sit down
You make time
You learn what’s most important to them under the circumstances--you listen
Don’t talk more than half the time
Key Phrases: I wish things were different, I’m worried, If time becomes short, what’s important to you?
Key questions to ask include:
What do you understand the prognosis to be?
What are your concerns about what lies ahead?
What kinds of tradeoffs are you willing to make?
If your health worsens, how do you want to spend your time?
Who do you want to make decisions if you can’t?
187 What’s the actual function of medicine--this is a central question at the heart of all this. At its core it seeks to fight death and disease but death will always win. You want a doctor who knows when to surrender and not fight to an unneeded bitter end.
199 We want doctors who take time to understand what we care about most which is in some cases to leave well enough alone.
201 The best term for what we desire is “shared decision making” or an “interpretive relationship” where the doctor helps us determine what we want. This is almost a counselor role
206 Ask your doctor, what does this information mean to you? Author used the term “I’m worried.”
207 “Ask, tell, ask” when you have bad news to deliver: Ask what they want to hear/know, tell them the information, then ask what they understood.”
208 ODTAA syndrome: one damn thing after another
209 Understanding the finitude, the finality of one’s time can be a gift.
210 Autonomy: “you may not control life’s circumstances but getting to be the author of your life means getting to control what you do with them.”
232 One type of courage with terminal illness is deciding what matters most: one’s fears or one’s hopes.
234 Other good questions:
What are your biggest fears and concerns?
What goals are most important to you?
What tradeoffs are you willing to make?
What tradeoffs won’t you make?
243 In treating the sick and aged, doctors fail to recognize that people have priorities beyond merely being safe and living longer--they want to shape their own story to sustain meaning in life
244 With regard to assisted suicide, there’s a philosphical and real difference between letting people stop the external and/or artificial processes that prolong their lives and giving them the right to stop natural/inherent processes that sustain their lives.
245 “Our ultimate goal is not a good death but a good life to the very end.”
247 the aim of hospice care in theory is to give patients “their best possible day.”
248 the “dying role” is not to be forgotten--the chance for the dying to pass on their memories, wisdom, experiences, and wishes--to establish their legacies.
259 A doctor’s job goes beyond just ensuring health and survival--it must enable well-being--that is, the reasons one wishes to be alive.
When sickness comes, one must ask:
What is your understanding of the situation and its potential outcomes?
What are your fears and what are your hopes?
What are the tradeoffs you’re willing to make?
What is the course of action that best serves this understanding?
I
Early on Gawande captures the decision that we will all make (ideally) before we grow old: “how to make life worth living when we’re weak and frail and can’t fend for ourselves anymore.” More specifically, he seeks to find out “how [can] people age without having to choose between neglect and institutionalization?” Notably, he acknowledges that the challenge to answering these questions is largely a structural one: “How can we build a health care system that will actually help people achieve what’s most important to them at the end of their lives” instead of the current medical status quo and culture that is is built on chasing the long shot--the “medical equivalent of lottery tickets”--on treatments that likely won’t work but near nothing on preparing the patients for the certainty that the treatments won’t work. Most frightening is his conclusion that for the majority of the medical community “hope is not a plan, but it is our plan.”