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The Art of Dying Well

Page 25

by Katy Butler


  as legal right, 26

  multiple backup copies of, 119

  obtaining forms for, 28, 33–34

  advanced illness, 77, 214

  “against medical advice” (AMA) discharge from hospitals, 116, 131

  aging

  developmental tasks related to, 31

  health stages of later life and, 8

  medical risks with, 21

  people’s acceptance of, 6–7

  Slowing Down health stage and, 40

  Alberts, Alan, 153–54

  Alcoholics Anonymous, 20, 33, 237

  alcohol use, and lifestyle changes, 16

  allow natural death (AND) orders, 120, 128, 133, 218, 219

  alternative medicine, 217

  Alzheimer’s Association, 86, 124

  American Academy of Home Care Medicine, 119

  American Board of Internal Medicine (ABIM), 49, 227, 235

  American Cancer Society, 86, 235

  American Geriatrics Society, “Beers List” from, 52, 214, 240

  American Heart Association, 91

  American Society of Clinical Oncology, 91

  ancillary health care workers, 60

  AND (allow natural death) orders, 120, 128, 133, 218, 219

  anticholinergics, 39, 47, 48, 52, 214, 239

  Ars Moriendi (medieval text), 3–4

  aspirin, 47, 99

  assisted living residences

  Adaptation health stage and, 55, 61

  cost of, 57, 62, 68, 166

  frailty and, 107

  response to medical events in, 113, 118

  attending physician, 214–15

  Back, Anthony, 83, 93–94, 98, 100

  back surgery, 21

  balance

  exercise programs for, 16, 65

  medications affecting, 39, 40, 46

  Beacon Hill Village, 58

  “Beers List” (American Geriatrics Society), 52, 214, 240

  Being Mortal (Gawande), 7, 86

  benzodiazepines, 47–48, 146, 240

  Berman, Amy, 78–81, 84, 92, 95, 102–3

  bioethics committee, 215

  blood pressure

  lifestyle changes to lower, 19, 20

  medications for, 19, 20, 33, 38, 46, 74, 115, 129

  Bourne, Molly, 147–48

  brain

  medications harming, 46, 47, 52

  See also cognitive abilities

  Buddhism, 32, 170, 182

  Calmes, Beth, 190

  cancer

  diet in treatment of, 99

  drugs for, 94

  hospice for, 146–47

  immunotherapy for, 95

  medical marijuana for, 99–100

  online sources for, 86, 235

  stage four, 77, 84, 85, 141, 147, 164, 228

  strengthening immune system in, 99

  survival times in, 94, 95

  capacity, 215

  cardiac catheterization, 110

  cardiac defibrillators, implanted, 124, 130, 133

  cardiac rehabilitation programs, 15

  cardiac surgery, 109, 110

  cardiopulmonary resuscitation (CPR), 217–18

  care decisions on, 124

  do-not-resuscitate (DNR) orders covering, 120, 218

  POLSTs and MOLSTs on, 119, 120, 218

  care, definition of, 215

  caregivers

  alliance for, 236

  community programs for older people with respite for, 71

  complex relationship with, 72

  death’s impact on, 142

  dementia and, 107, 114, 122, 124

  dilemma of when to stop medical procedures, 122

  dying process and, 168, 169, 232

  finding and hiring, 71

  frail people and, 112–13, 129

  home death and, 176–77, 178

  hospice and, 144, 147–48

  online discussion group for, 237–38

  PACE support for, 199

  paid home care to help, 69, 70, 74

  POLST and, 119, 121

  terminal illness and, 70, 74, 85

  caregiving role

  family and, 70, 74, 236

  tribe for sharing, 23, 158

  C. diff infection, 139

  charge nurses, 215

  chemo brain, 216

  chemotherapy

  financial incentives for using, 96

  quality of life and, 99

  cholesterol-lowering statins, 18, 46, 74

  Choosing to Die (Shacter), 154, 233

  Choosing Wisely website, 49, 52, 227, 235

  chronic illness, 77, 216

  circling the drain, 216, 220

  clinical effectiveness, 216

  clinical trials, 97–98

  coding, 216

  cognitive abilities

  Adaptation health stage and, 63

  annual assessments of, 20

  cholesterol-lowering statins affecting, 46

  post-operative decline of, 22, 225

  prednisone and other steroids affecting, 48

  sleep drugs affecting, 240

  Slowing Down health stage and, 37

  cognitive reserve, 45

  Cologuard screening tests, 49

  colonoscopies, 49

  comfort care, 68, 91, 145, 164, 216–17

  dementia and, 126–29, 133

  sample letter on, 127–29

  comfort measures, orders for, 119, 126–29, 133, 192, 217, 229

  community support programs and services, 60, 62, 70–71, 236–38

  complementary medicine, 99, 217

  concierge practices, 44–45

  congestive heart failure (CHF), 217

  Conversation Project, 28, 33, 240

  CPR. See cardiopulmonary resuscitation

  crash carts, 218

  Cruzan, Nancy, 26–27

  Cunningham nursing home, 204–5

  cyanosis, 218

  daily life

  disaster-proofing your home against risks in, 64–67

  simplifying, in Slowing Down health stage, 41, 52

  DASH (Doctors Assisting Seniors at Home), Santa Barbara, California, 117–18

  death and dying, 1–9, 161–93, 218

  Ars Moriendi (medieval text) on, 3–4

  behavior of gravely ill person before, 163

  care provided during, 180–81

  ceremonies of death and, 182

  choosing time of, 152–55

  desire to reclaim power to shape experience of, 5

  emotional legacy after, 156–57

  final hours in, 182–83

  five emotional tasks before, 156, 160

  goodbye rituals in, 190–91

  “good death” concept and, 29, 30, 33, 168, 197–98, 205

  health stages of later life and, 8

  hoping to die well, 3

  hospital and medical technologies signs of, 164

  hospital setting for, 5–6, 7, 184–90, 192

  life support removal before, 164, 184, 224

  making use of time left before, 138–39

  medical rights and planning ahead for, 24

  notifications to be made after, 183

  people’s feelings and wishes about, 7, 9

  physical process of, 168–69, 175–76

  physician-assisted, 152–53, 214, 219, 222, 226

  poem and prayer recitations during, 192–93

  preparing for, 135–60

  reform movement focused on, 7–8

  settling affairs before, 149–51

  story about new art of, 197–209

  story about signs before, 165–68

  support circle for, 158–59, 160

  ways to prepare for, 160, 192

  47, 65, 74

  See also dying at home

  Death Cafes, 7

  defibrillators, 218

  implanted, 124, 130, 133

  dementia, 107–33, 218

  advance directives for, 119–21

  care during last years of, 129
–32

  caregivers’ dilemma over prolonging life in, 122–24

  comfort care in, 126–29, 133

  coping with, 122–24

  goal of treatment in, 111–12

  house call programs in, 116–19

  medications causing, 47, 52

  precarious health in, 111

  resources for, 124

  statements describing, 107

  stories of families dealing with, 124–26, 130–32

  as terminal illness, 121–22

  trajectory in, 112, 122

  ways to prepare for, 133

  Devine, Meghan, 112

  diabetes, 16, 18–19, 129

  diabetes prevention programs, 20, 33, 43, 46

  diet

  cardiac health and, 15, 19

  diabetes and, 18, 19

  last years in dementia and, 129, 133

  life-limiting illnesses and, 99, 101

  lifestyle changes affecting, 16, 19

  DNR orders. See do-not-resuscitate (DNR) orders

  doctors

  Adaptation health stage and overall health assessment from, 61

  financial incentives for using medications and, 43, 96

  frailty as distinct health stage and, 113

  goals of care and, 77, 96, 164, 203, 221

  health maintenance organizations (HMOs) and, 43

  overmedication and, 45–46

  preventive medicine and, 20, 33

  referrals for physical, speech, or occupational therapy from, 63, 74

  retirement communities with, 68

  talking about terminal illness diagnoses with, 83–85, 94, 104

  training in talking about terminal illness for, 83, 94

  See also geriatricians; primary care doctors

  Dolara, Alberto, 42

  do not hospitalize (DNH), 218

  do-not-resuscitate (DNR) orders, 28, 120–21, 133, 192, 218, 219

  home death and, 178

  keeping multiple backup copies of, 119, 121

  Medic Alert bracelet for, 121, 127, 178

  possible ignoring of, 121

  do not transport (DNT), 218

  drinking

  alcohol use and lifestyle changes, 16, 20, 33, 237

  voluntary stopping of eating and drinking (VSED), 153, 154, 178, 180, 206, 229

  water intake and, 37, 65, 115

  driving, decision to stop, 55, 56, 67

  drugs. See medications

  Drugs.com, 46, 235

  Dunn, Hank, 124, 232

  durable power of attorney for health care, 28, 33, 225

  choosing ideal person as, 28, 33

  See also power of attorney (POA)

  Dwindles trajectory, 86, 89, 112

  dying. See death and dying

  dying at home

  Americans’ desire for, 5

  earlier family experience with, 4

  hospice nurse and, 174, 175–76

  Medicare Advantage plans and, 44

  preparing for, 176–79

  story about, 170–76

  ways to prepare for, 192

  eating

  lifestyle changes affecting, 16, 19

  voluntary stopping of eating and drinking (VSED), 153, 154, 178, 180, 206, 229

  See also diet

  edema, 219

  Eden Alternative, 204

  Ehrenreich, Barbara, 7

  Emanuel, Ezekiel, 44

  emesis, 219

  end stage illness, 77, 219

  euthanasia, 219, 224

  evidence-based medicine (EBM), 43, 219–20, 235

  exercise

  aging and maintaining functioning using, 15–16, 17, 18, 19, 33, 40, 99, 129

  overcoming challenges in, 19

  pain management and, 46, 47

  rehabilitation and, 63, 64, 72

  sleep and, 48

  failed back surgery syndrome, 21

  failure to thrive, 220

  fall prevention classes, 43, 65, 74

  falls

  aging bodies and, 16, 65

  causes of, 114–15

  exercise to prevent, 64–65, 74

  eyesight and, 65

  fire department’s “Lift and Assist” service for, 114

  frailty and, 107, 108, 113, 114–15

  during hospital stays, 109

  house assessment for, 65–66, 241

  medications and risk for, 45, 46, 47, 48, 50, 52, 129, 239, 240

  retirement community policies on, 68

  family

  caregiving role and, 70, 74

  conversations about medical decisions with, 29–30

  legacy letters to, 100

  morphine prescriptions and fears of, 145–46, 174, 177

  terminal illness and, 89–90, 102–3

  Final Exit Network, 154

  financial plans

  Adaptation health stage and, 62, 74

  death and, 102

  hospice and, 143

  Medicaid and, 62–63, 66, 70, 241

  FIT screening tests, 49

  “Five Wishes” advance directive, 28, 33

  Fonda, Jane, exercise videos from, 64, 238

  Food and Drug Administration (FDA), 21, 94, 98

  fragility, 220

  frailty, 107

  advance directives in, 119–21

  factors in hospitalization decision for, 114–16

  hospitalization’s impact on, 109–11, 113–14

  house call programs in, 116–19

  “House of Cards” health stage, 111–112, 124, 129

  recognizing as distinct health stage, 112–13

  possible services needed by, 112–13

  statements describing, 107

  story about family’s approach to, 108–10

  surgery decisions in, 115–16

  frequent flyers, 114, 221

  friends

  acceptance of reality of death by, 29–30

  bad diagnoses and support from, 82, 83, 84

  conversations about medical decisions with, 29–30

  disability and help from, 69, 74

  dying at home and, 177, 178, 179, 182

  dying in a hospital and, 184–85, 186, 189–90

  exercising with, 18

  hospice and, 144, 145, 148

  making a move and finding, 67, 68

  neighbors as, 22–24, 33, 69

  preparing for death and, 143, 154, 158, 159

  as proxies or health care agents, 28, 30, 33

  retirement communities and, 68

  support networks with, 23, 57, 60, 69–70, 142, 160

  surgery support from, 116

  as a tribe, 23, 24, 158–59, 176

  younger people as, 22, 33, 69

  funeral plans, 102, 137, 174, 199, 208

  Galin, Bronni, 56–59

  Gawande, Atul, 7, 83, 86, 212

  geriatricians, 52, 211, 221

  goal of, 114

  medication reviews by, 39, 45–46, 129, 130

  preventive medicine and, 20

  screenings and, 49

  geriatrics, 8, 238

  pharmacists with specialized knowledge of, 45–46

  Slowing Down health stage and, 41

  goals of care, 77, 96, 164, 203, 221

  GoGo Grandparent rider service, 58

  Gross, Dawn, 93

  Hard Choices for Loving People (Dunn), 124, 232

  Hazanov, Valery, 72–73

  health care agent or health care advocate, 28, 85, 122, 158, 215, 225, 226

  health care system

  Adaptation health stage and, 60

  concierge practices and, 44–45

  reform movement focused on dying and, 8

  Slow Medicine movement and, 42

  health insurance

  hospices and, 145

  house call programs and, 118

  Medicare Advantage plans and, 42–43, 43–44, 52, 117, 240–41

  obtaining medical rights forms from, 28

  wellness appointments under, 20
<
br />   health maintenance organizations (HMOs), 42–43, 44, 52, 67, 115, 240–41

  health screenings, 41, 49, 52, 223, 227, 235

  Heiser, K. Gabriel, 63, 241

  Helman, Shoshana, 100

  high-value care, 221

  Hippocratic oath, 26, 27, 152

  HMOs (health maintenance organizations), 42–43, 44, 52, 67, 115, 240–41

  Hoefer, Daniel, 48, 108, 109

  Hoffman, Ron, 84

  Home Based Primary Care program (HBPC), Veterans Administration, 116, 242

  home death. See dying at home

  home health aides, 58, 62, 69, 71–72, 145, 200, 225, 238

  hope, in terminal illness, 7, 82, 84, 100–102

  hospice, 2–3, 143–49, 221–22

  Medicare Advantage plans and, 44

  morphine and other medications used in, 145–46

  myths about, 143–48

  next steps in learning about, 148–49

  researching options in, 148

  story about, 170–76

  talking with doctors about, 83, 104

  hospice nurses, and dying at home, 174, 175–76

  hospital delirium, 222

  hospitalization

  factors in decision for frail people’s stay of, 114–16

  Medicare Advantage plans and rates of, 44

  hospitals

  cardiac rehabilitation programs in, 15

  frail people’s reactions to stays in, 109–11, 113–14

  leaving “against medical advice” (AMA), 116, 131

  as setting for dying, 5–6, 7, 184–90, 192

  house call programs, 116–19, 145, 148, 179

  housing

  Adaptation health stage and choices in, 58–59, 67–69

  disaster-proofing against risks in, 64–67

  How to Protect Your Family’s Assets from Devastating Nursing Home Costs (Heiser), 63, 241

  IADLs (instrumental activities of daily living). See ADLs (activities of daily living)

  immune system

  aging and, 40

  bone marrow transplantation in cancer and, 171

  C. diff infection in hospitals and, 139

  impact of trauma to, 108

  medications weakening, 48

  radiation therapy in cancer and, 92

  strengthening of, in cancer treatment, 99

  immunotherapy, 95

  implanted cardiac devices (ICDs). See defibrillators; pacemakers

  incurable illness, 77, 81, 222

  Institute of Medicine, 209

  instrumental activities of daily living (IADLs). See ADLs (activities of daily living)

  insurance. See health insurance

  intensive care units (ICUs), 44, 121, 149, 164, 184–85, 189

  deaths in, 5

  Johnston, Judy MacDonald, 24, 237

  Kaiser Permanente systems, 43, 44, 186, 210, 240

  Kalanithi, Paul, 7

  Keyssar, Judith Redwing, 155, 188

  Lamar, Laura, and “Marj,” 38–40

  late-stage illness, 77

  law of double effect, 222

  legacy letters, 100

  lifestyle, changes in, 16–17, 20, 40, 217

  life support, removal of, 164, 184, 224

 

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