Notes from the Book Group on April 21, 2015

Recollections of the Meeting of the Bryn Mawr Book Group on Tuesday, April 21, 2015

For Being Mortal: Medicine and What Matters in the End by Dr. Atul Gawande

Present: Roo Dane, Anne Ipsen, Sandra Lovell, Dorianne Low, Cornelia Robart.
Dr. Atul Gawande, a surgeon at Brigham and Women’s Hospital, has offered a serious look at medical care for end-of-lifers, and how favoring the patient’s wishes rather than the convenience of the doctors (nurses, nursing homes, etc.) can and should be adopted.
Readers’ first impressions – disappointment, frustration at already knowing much of the material presented. Since the 1980s the subject of end-of-life has been more or less taboo. Suddenly it is on every third email and factoid health message. One member told an 8-year-old who developed a lifelong antipathy to hospitals when promises made by the remover of tonsils doctor told that it would not hurt, there would be pain-free ice cream afterwards.
Lengthy dying is hard on the dying and the caregivers who take on a load of guilt at every absence from the bedside but are about ready to call it quits. Many around us remind of the importance of establishing a Living Will / Health Care agent, including a wish list for care when terminally ill or incapacitated. It has been observed that families override these wishes, but if one has had The Conversation with beneficiaries/survivors this occurrence is less likely.
Gawande mentions progressive hospices in the Boston area and elsewhere that cater to the comfort of the about-to-be-deceased – ice chips, people in attendance, music, activities, etc. (This is also dealt with in Living Will information easily available on the web.) One member’s father was in a hospice where he was so bored he tried to jump out the window. (Remember The 100-Year-Old Man Who Jumped Out the Window?) Locally, Cambridge and Newton both have “at-home” senior services.

Of course, many of the services, activities, outings etc. become increasingly less interesting as the body wants more rest. There followed a discussion of various hospices/retirement homes. Without mentioning names, they were:

  • Residents too lively
  • Residents too chilly
  • Retirees consist mainly of widows and bankers
  • Very costly
  • Long wait lists… and so forth.

End-of life expenses can be very high. We’ve noticed that the price of a baseline admission (purchase) cost to a nice retirement community you can

  • Keep or lose up to 100% of your purchase cost post-mortem, over and above your monthly fees.
  • Be charged 200-300% more for hospice care (if not announced up front at purchase time, ask).

In short, stay well as long as you can! (One ’61 classmate has taken up weight training with her husband and also ballet for seniors!)

Better to move in prior to end of health, to seek a place that is safe, comfortable, where you eat well, that is not clique-ey.

We want a Marigold Hotel!

(Consult with Roo or me for “wouldn’t it be loverly” conversations.)

Some states such as Vermont have right-to-die laws. Become a resident of Vermont before decrepitude. Right-to-die available only if under 6 months ETA to live. The Vermont Sunset Law, currently under risk of repeal, states “Currently, patients must initiate the conversation, they must be determined capable by a physician or psychologist, make a written and oral request for the medication, and undergo a waiting period before they receive the medication among other provisions meant to ensure people’s choice to end their lives is voluntary. Opponents of the bill would like to see it repealed because, even with the protections, the prevalence of elder abuse and financial pressures that can influence end of life care make it likely people will be pressured to use the law to end their life, they say.”

Some other comments: Oregon also has a Hemlock Society, other states will likely follow. One debatable suggestion about Alzheimer’s patients – don’t visit when patient is sent away. Movies on the subject of Alzheimer’s: Iris, Still Alice, Away From Her, The Forgetting,

Being Mortal is well-written, and, although the subject can be difficult, it is an important book. (My primary elder-care physician agrees.

Readers agreed we should totally recommend this book: “If you haven’t read it, you should. If you have read it, it will refresh and clarify your thoughts on this topic, also give a foundation for discussions.

Exceptions – maybe not offer to:

  • Older husband with aging issues
  • Dying father-in-law, but yes to children
  • Not to widowed sister-in-law
  • Not to living heart patient, yes to younger brother to help with living will….