In this book, Atul Gawande, a surgeon (and also Harvard professor and New Yorker staff writer…), addresses the issue of mortality and how many people in the US are not ready to face death when it finally comes. He used a lot of personal anecdotes as well as facts to drive home his main points. Reading this made me realize how much I haven’t yet come to terms with my own mortality.

I liked it a lot. It also made me think a lot about what are things that are really important to me: what are my values, what are my priorities, what are the things I care about most at the end of the day.

Notes:

• In the beginning, Gawande mentions that even until a few hundred years ago, the elderly were mostly taken care of by their children… What he fails to mention is that the burden of taking care of elderly parents usually fell on the daughters and that in the past, women were not as likely to go out and seek their own careers/lives. In a time when women had few options, they were often culturally voluntold into roles as a caregiver. Like emily dickinson
• Recently, children and parents moving away have given both parties a sense of autonomy … “form of freedom” (21). “Veneration of the independent self” (22)
• “Human beings fail the way all complex systems fail: randomly and gradually” (33)
• Old lady with many problems: back pain, arthritis, bad knees, cancer…. Geriatrics doctor realizes the biggest problem is her not cutting her toenails and taking care of her feet, bc then more prone to falling
  • Chad Boult led a study demonstrating that people’s lives were better with specialized geriatric care. Then university lost funding. People don’t care about this….
  • “It’s a strange double standard. No one insists that a $25K pacemaker or coronary-artery stent save money for insurers…” (45) (geriatric services cost hospital $1350 per person)
  • “When the prevailing fantasy is that we can be ageless, the geriatrician’s uncomfortable demand is that we accept we are not” (46)
    • Culture of the world now is to fix, not to maintain…. The latter is not as flashy
• Gave up piano keys, now his car keys :(
• Felix and Bella are an old couple with fading memories… “When they walked, they held hands. At night they lay in bed in each other’s arms, awake and nestling for a while, before finally drifting off to sleep…. He felt they knew each other, and loved each other, more than at any time in their nearly seventy years together” (56)
  • Hmm… When you forget the baggage of your memories, is how you act/react/think your core self/core personality?
• Loss of autonomy (over the physical body, over memories/thoughts, over relationships) is worse than death itself
• Modern nursing home: 1950s, poorhouses were forced to close, sick and disabled put in hospitals. Not enough room, they were put into separate custodial units for an extended period of time. “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” (71)
• Being in nursing home sucks
  • “All privacy and control were gone” (73)
  • “She felt incarcerated, like she was in prison for being old” (73)
  • Nursing home provides safety….. “But she was wretchedly unhappy…. She expected more from life than safety” (74)
    • She missed friendships, privacy, purpose to her days
  • “Who knew you could rebel just by eating a cookie” (76)
  • “It wasnt dying that scared him, but the possibility of dying alone” (82)
• Assisted Living centers initially created to be a new kind of home for the elderly (radical concept at the time). Tenants with private apartments and pets and control over temperature settings/food/etc also provided with care….
  • Difference with nursing home is the caregivers are “entering someone else’s home, and that changed the power relations fundamentally” (91)
• What makes life worth living?
  • “What makes life worth living when we are old and frail and unable to care for ourselves” (92)
    • Maslow’s Hierarchy of Needs: basic needs. Need for love and belonging. Desire for growth (to master knowledge and skills). “Self-Actualization - self fulfillment through pursuit of moral ideals and creativity for their own sake” (93)
  • As people get older they “focus on being rather than doing and on the present more than the future” (94)
  • “He did not want his life reduced to a bed, a dresser, a tiny TV, and half of a room with the curtain between him and someone else” (108)
  • “She didnt want to plan her life around the infusions of chemotherapy … She wanted to be a wife/mother/neighbor/friend again. She decided to take what time would give her, however long that might be” (209)
• Lauren Cartensen psych study (on the Ted Radio podcast about Time!)
  • As you get older you get happier overall
  • This is because your perspective changes -- “your personal sense of how finite your time in this world is” (95)
  • “When I looked at what seemed important to me, very different things mattered” (96)
  • “How we seek to spend our time may depend on how much time we perceive ourselves to have. When you are young and healthy you believe you will live forever… the sky is the limit … When horizons are measured in decades….” (98)
  • Perspective was all that mattered
  • “When life's fragility is primed, people’s goals and motives in their everyday lives shift completely. It’s perspective, not age, that matters most.” (99)
• “In the absence of … a vast extended family … our elderly are left with a controlled and supervised institutional existence … a life designed to be safe but empty of anything they care about” (109)
• The idea of discrete vs. continuous. Working in ER has very discrete, reparable problems (like broken leg). Working in nursing home has continuous problems (more problems as you age, problems without clear solutions…)
• The idea of appaling vs. appealing
• “There are people in the world who change imaginations” (139)
• Different kinds of autonomy
  • “Free action” - living completely independently (kinda like John Galt I suppose)... But to what end”
  • “To be authors of our lives” (140) … In responsibility …. “To lead our own lives rather than be led along them” ….
    • “The story is ever changing”
• Letting go
  • “When should we try to fix and when should we not?” (149)
    • “So she just lay there tethered to her pumps, drifting in and out of consciousness” (154)
    • “Unprepared for the final stage”
    • “You will never leave this borrowed, fluorescent place” (155)
  • Ars moriendi -- The art of dying
• Hospice care
  • “The difference between standard medical care and hospice care is not the difference between treating and doing nothing … The difference was in the priorities... “ (161)
    • Ordinary medicine goal = extend life
    • Hospice care goal = focusing on living fullest possible lives right now
  • “Ninety-nine percent of people understand they’re dying, but one hundred percent hope they’re not” (161)
  • Hospice trying to offer “new ideal for how we die” … “ars moriendi for our age” (165)
  • For many patients with terminal cancers, “no difference in survival time between those who went into hospice and those who didn’t” (178)
• Some patients don’t want to talk about dying, to face the unreality of their disease
  • “Discussing a fantasy was easier - less emotional …” (169)
  • “Our every impulse is to fight, to die with chemo in our veins or a tube in our throats or fresh sutures in our flesh. The fact that we may be shortening or worsening the time we have left hardly seems to register…” (173)
• Hard conversations to have…
  • “Doctors everywhere become all too ready to offer false hopes” (192) -- it’s easier
  • “He was more worried about what the operation might do to him than what the tumor would” (198)
• Stages of medical development paralleling economic development
  • Deaths occur in the home, people don’t have access to professional diagnosis and treatment
  • Deaths occur in hospitals
  • Deaths occur in the home, again -- people have the means to become concerned about the quality of their lives
• “Reality of mortality” (194)
• Types of doctors
  • Paternalistic - doctor tells you what to do
  • “Informative” - Doctor as technical expert, patient as consumer. Doctor supplies knowledge and skills. Patient supplies the decision
  • Shared decision making - we want information and control but also guidance… doctor not as a technician or commander, but as a counselor
• “Understanding the finitude of one’s time could be a gift” (209)
  • “Sudden knowledge of the fragility of his life narrowed his focus and altered his desires” (209)
  • What autonomy means - “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.” (210)
  • “He was torn between living the best he could with what he had versus sacrificing the life he had left for a murky chance of time later” (220)
  • Hospice nurse gives simple solutions… Hospital/chemo gives super complex solutions… And at the end of the day, will still die……. Making the decision is a cost-benefit risk… (228)
    • “Consequences of living for the best possible day today instead of sacrificing time now for time later” (229)
• Confronting what you really want after accepting mortality…
  • For example… He wanted to type because email and Skype was how he connected with family and friends. He didnt want pain. “I want to be happy” (228)
  • Courage = confront the reality of mortality AND act on the truth we find…
    • “One has to decide whether one’s fears or one’s hopes are what should matter most” (232)
    • Perspective on time shifts…
• Thinking, Fast and Slow (Daniel Kahenman) - pain rating
  • Peak End Rule - we remember the moment of greatest intensity and the feeling at the end
• People have two selves - experiencing self (endures every moment equally) and a remembering self (Peak End rule … even when ending is an anomaly!)
  • We believe that the remembering self will later see matters differently than the experiencing self (244)
• Life is meaningful because it is a story
  • “In the end people don’t view their life as merely the average of all its memories” (238)
  • A story has the sense of a whole… arc determined by significant moments …
  • “A seemingly happy life may be empty. A seemingly difficult life may be devoted to a great cause” (238)
  • “And in stories, endings matter”
• We have priorities “beyond merely being safe and living longer; that the chance to shape one’s story is essential to sustaining meaning in life…” (243)
• Ultimate goal!!!!
  • A good life not a good death
• “Assisted living is far harder than assisted death, but its possibilities are far greater” (245) -- THESIS
• Goal of medicine: to enable well being… reasons one wishes to be alive (259)
• Gave up piano keys, now his car keys :(
• Hmm… When you forget the baggage of your memories, is how you act/react/think your core self/core personality?
• “He did not want his life reduced to a bed, a dresser, a tiny TV, and half of a room with the curtain between him and someone else” (108)
• When horizons are measured in decades
• “So she just lay there tethered to her pumps, drifting in and out of consciousness” (154)
• “You will never leave this borrowed, fluorescent place” (155)
• “In the end people don’t view their life as merely the average of all its memories” (238)
• “A seemingly happy life may be empty. A seemingly difficult life may be devoted to a great cause” (238)
• Ultimate goal is a good life not a good death