Being Mortal (book)
🔗Connect
🔼Topic:: medicine 🔼Topic:: Death 🔼Topic:: Wellbeing (MOC)
✒️ Note-Making
💡Clarify
🔈 Summary of main ideas Four things that are essential to our quality of life:
- Autonomy - control over our life is critical for our well being. Being able to preform the most basic tasks of life, like eating, going to the bathroom, a not being dependent on others is essential for our self esteem and worth. Preferably, advanced tasks such as walking, leisure activates and mental sharpness are also very beneficial. Autonomy
- Ownership - we need to feel ownership of our environment. That we are not items to be sorted, but rather people that their consent, opinion and preference is needed. A feeling of home, of belonging, is priceless.
- Meaning - At those stages, there is hardly any internal meaning that keeps us going, like something we want to achieve in life. Rather, we switch our focus to others. Having a responsibility over someone or something, that we contribute to an external goal, that we help life exist, could imbue our lives with meaning.
- Social ties - Loneliness is a disease in itself. We need a feeling of friendship, community, family as an integral part of our lives. Human is a social being
🗒️Relate
⛓ Life lessons, action items
- Focus on quality - When it is clear that the end is near and unavoidable, we should focus on quality of life, rather than prolonging it, since it is not only better for our quality of live, we might even live longer. exploration vs exploitation.
- don't run from hard conversations - at some point we have to ask ourselves what do we want out of life, what are our fears and hopes, and what is important for us given our limitations
🔍Critique
✅ by following this method, what will happen?
- Inner peace - you and your loved ones will have an easier and better end of the story if you focus on what matters instead of pointless prolonging.
❌ the logical jumps, holes or simply cases where it is wrong...
- Clarity of mind - how can one make tough decisions under pain, and with a severe knowledge gap from his doctor? Who can really say no to what his doctor is recommending him? Who can demand independence when knowing what a burden that will pose on your family.
🧱 Implementations and limitations of it are...
- Limited - we are not left with a lot of options and tools to prevent the bad decisions presented in the book, besides making the tough conversations, but perhaps that's all there is to it.
🗨️Review
💭 my opinions on the book, the writers style...
- This book is as much a goodbye story to his father as it is a message about medicine and accepting death. In that sense, it is not a regular non-fiction book, but rather a true life story with a purpose.
- Since this is a book by a doctor, the content is rather very technical and descriptive of exactly the type of problems people face near the end, and I preferred to skip those, since it is both non-contributing to anything, and also can be a bit TMI to hear.
🖼️Outline
📒 Notes
Intro
Death has transformed from a social issue to a medical problem to be solved. It has been marked as the enemy to be dealt with at all cost, including that of the wellbeing of the patient itself.
Medicine, in the process, has turned into a something that deals with absolutes, biological riddles to be solved, while failing the patients themselves along the way.
- scientific advances have turned the processes of aging and dying into medical experiences, matters to be managed by health care professionals. And we in the medical world have proved alarmingly unprepared for it. (Location 104)
- Death, of course, is not a failure. Death is normal. Death may be the enemy, but it is also the natural order of things. (Location 126)
- For a clinician, therefore, nothing is more threatening to who you think you are than a patient with a problem you cannot solve. (Location 136)
- You don’t have to spend much time with the elderly or those with terminal illness to see how often medicine fails the people it is supposed to help. (Location 149)
Chapter 1 - the Independent Self
We used to host elderly with the family, to rely on them for wisdom. Now we have industrialized and foreignized the process. Elderly are more accurately "thrown" into hospice care without hearing their opinion, being treated medically but without the emotional care they need.
- In contemporary societies, by contrast, old age and infirmity have gone from being a shared, multigenerational responsibility to a more or less private state—something experienced largely alone or with the aid of doctors and institutions. (Location 251)
- At one time, we might have turned to an old-timer to explain the world. Now we consult Google, (Location 267)
- Our reverence for independence takes no account of the reality of what happens in life: sooner or later, independence will become impossible. (Location 325)
Chapter 2 - Things Fall apart
In the past, health was either black or white, either healthy, or on death bed. Death came fast and unstoppable, like a slippery slope. Nowadays with modern medicine, this slippery slope has turned into a very slow decline, one that we as society try to ignore as hard as we can.
We as society have focused too much on each individual problem, rather than treating the person as a whole. That is what geriatrics is for, and it is highly underused. holistic
For example, instead of looking at each disease separately, focus on the greatest risk to overall health, like falling.
- The progress of medicine and public health has been an incredible boon—people get to live longer, healthier, more productive lives than ever before. Yet traveling along these altered paths, we regard living in the downhill stretches with a kind of embarrassment. (Location 378)
- there are costs to averting our eyes from the realities. We put off dealing with the adaptations that we need to make as a society. And we blind ourselves to the opportunities that exist to change the individual experience of aging for the better. (Location 478)
- The job of any doctor, Bludau later told me, is to support quality of life, by which he meant two things: as much freedom from the ravages of disease as possible and the retention of enough function for active engagement in the world. (Location 567)
Chapter 3 - Dependence
Nursing home as developed as an extension of hospitals, focused solely on "managing" the patients and their disability, seeing them as a means and not an end. Nobody focuses on the hopes, preferences and wellbeing of the elderly in those places.
- most of us will spend significant periods of our lives too reduced and debilitated to live independently. We do not like to think about this eventuality. As a result, most of us are unprepared for it. (Location 765)
- That was the beginning of the modern nursing home. They were never created to help people facing dependency in old age. They were created to clear out hospital beds—which is why they were called “nursing” homes. (Location 991)
- Nursing home priorities are matters like avoiding bedsores and maintaining residents’ weight—important medical goals, to be sure, but they are means, not ends. (Location 1046)
- We end up with institutions that address any number of societal goals—from freeing up hospital beds to taking burdens off families’ hands to coping with poverty among the elderly—but never the goal that matters to the people who reside in them: how to make life worth living when we’re weak and frail and can’t fend for ourselves anymore. (Location 1073)
Chapter 4 - Assistance
Although nursing homes are not a good solution, the alternative is not so easy as well. If a person stays with the family, the difficulties of combining both work and care while also perhaps being a parent yourself is simply overwhelming.
Even the family is having trouble with seeing the elderly as a person entitled to opinions and preferences, even if they are against his medical well-being.
- Taking care of a debilitated, elderly person in our medicalized era is an overwhelming combination of the technological and the custodial. (Location 1185)
- as people grow older they interact with fewer people and concentrate more on spending time with family and established friends. They focus on being rather than doing and on the present more than the future. (Location 1304)
- how we seek to spend our time may depend on how much time we perceive ourselves to have. (Location 1353)
Chapter 5 - A Better Life
In nursing homes, the three main dangers are boredom, loneliness and helplessness. All solvable by providing meaning to their lives, by giving them responsabilities over living things. Plants, pets and children bring wonders in well being and medical conditions.
Meaning, is it turns out, relies on having responsibility of something. Similarly, autonomy is not autonomy for it's own sake. Absolute freedom doesn't matter if we don't have anything to do with it. To be autonomous is to be able to be active, the writers of of our life, influential.
Beside responsibility, environment is also crucial. Having a personal space that resembles a home, while having a shared space that will facilitate social interaction is the best solution. Elderly should feel like owners, not items put on shelfs. Environmental design
- Three Plagues of nursing home existence: boredom, loneliness, and helplessness. To attack the Three Plagues they needed to bring in some life. (Location 1601)
- The only way death is not meaningless is to see yourself as part of something greater: a family, a community, a society. (Location 1773)
- Medicine’s focus is narrow. Medical professionals concentrate on repair of health, not sustenance of the soul. Yet—and this is the painful paradox—we have decided that they should be the ones who largely define how we live in our waning days. (Location 1789)
Chapter 6 - Letting Go
when the disease is terminal, we have to switch our thinking from "how can we prolong it", to "how can we make the most of what's left". Losing autonomy, mental clarity and even consciousness for a few months more to live would be to waste entirely what we have left.
Instead we should focus on reduce pain and maintain independence as much as possible.
The more surprising result is that trying to prolong our lives is not only hurtful to our quality of life, but we even live shorter than if we would have focused on quality. The law of reverse effect. Those who focus on happy life, with family and friends while abandoning the toxic medication live better and longer.
- People with serious illness have priorities besides simply prolonging their lives. Surveys find that their top concerns include avoiding suffering, strengthening relationships with family and friends, being mentally aware, not being a burden on others, and achieving a sense that their life is complete. (Location 2166)
- These days, swift catastrophic illness is the exception. For most people, death comes only after long medical struggle with an ultimately unstoppable condition (Location 2186)
- The lesson seems almost Zen: you live longer only when you stop trying to live longer. (Location 2507)
- All-out treatment, we tell the incurably ill, is a train you can get off at any time—just say when. But for most patients and their families we are asking too much. (Location 2647)
- Our responsibility, in medicine, is to deal with human beings as they are. People die only once. They have no experience to draw on. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come—and escape a warehoused oblivion that few really want. (Location 2649)
Chapter 7 - Hard Conversations
doctors have to learn how to do the hard conversations, when it is clear that we have reached the breaking point when death is certain. Patients also have to demand it. Instead of presenting the "all out treatment" as default, we should focus on the preferences of the patient, on his anxieties, and how would they like to deal with their upcoming future, which trade-offs are they willing to make. These are never easy, but these are the conversations we should have. Communication is in our nature.
Chapter 8 - Courage
Hard conversations are not enough, in order for them to be relevant and effective, we, as in the family and the patient, must have courage.
By courage we mean to identify what are our fears and hopes, and not let it push us into decisions that are bad for us based on our true preferences. To not let illusions of cure, or the end of pain blind us to what's really important, which is usually autonomy, meaning and social life.
- At least two kinds of courage are required in aging and sickness. The first is the courage to confront the reality of mortality—the courage to seek out the truth of what is to be feared and what is to be hoped. Such courage is difficult enough. We have many reasons to shrink from it. But even more daunting is the second kind of courage—the courage to act on the truth we find. (Location 3280)
- When our time is limited and we are uncertain about how best to serve our priorities, we are forced to deal with the fact that both the experiencing self and the remembering self matter. We do not want to endure long pain and short pleasure. Yet certain pleasures can make enduring suffering worthwhile. The peaks are important, and so is the ending. (Location 3387)
Epilogue
We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive. (Location 3673)