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….

Notes from the Book Group on March 24, 2015

For Orange Is the New Black, My Year in a Women’s Prison, a memoir by Piper Kerman

(Roo Dane in absentia graciously provided her home.) Present: Dorianne Low, Sandra Lovell, Katherine O’Connor, Sydney Owens, Barbara Powell, Dodie Rees, Cornelia Robart. A warm welcome to newcomer Marcela Musgrove, who traveled in from Worcester.

Piper Kerman, native of Boston, craved adventure and an independent life. She got the first by becoming a money-laundering drug mule for a lesbian friend. Caught and convicted for trafficking, she remained in judicial limbo for about six years until she was finally sentenced to 18 months in the women’s facility at Danbury, Connecticut. This was an adventure of a very different kind. In this memoir, Piper reveals a world that most of us have never experienced or even imagined. Although some participants said the TV series did a good job of illustrating racial problems among the women Piper shared time with, and featured some lively characters like “Pop,” the cook, in general the series seemed aimed at an LCD audience hungry for sex scenes.

Not the book. For one thing, sex was not as urgent or violent as one has been TV-trained to expect in a male prison. The editors managed to organize Piper’s experiences into interesting segments of descriptive narrative. Some thought Piper was vapid. Others remarked that her small, blond physique helped her to be accepted by the other inmates, and her withdrawn, non-confrontational personality did not often threaten or provoke ill-tempered reactions from them. A Smith graduate, she kept to herself and did not seek other WASP peers, nor they her. She never gave advice but was willing to help her fellows in different ways – coaching writing assignments, participating in secret meals and parties celebrating birthdays, prison achievements, and sad goodbyes at the prison exit.

Piper was also gifted in recognizing when to stay quiet and when and how to complain about the guards, or find another work duty to get away from sadistic ones. A scene involving snaking a grease-coated hosepipe through a narrow slot, urged on by a lascivious guard, was appalling. The fact that she survived and wrote the memoir enables the reader to persevere reading through the sad horror of prison life. Some of the absurdities of leaderless prison management made our teeth grind in exasperation: the transfer process, for instance, dehumanizing beyond imagination, and the absurd organization of available goods (why were the tomatoes on that hidden shelf?).

Piper was introduced to work stations such as electricity maintenance, building and carpentry, and avoided becoming a driver, thus escaping solicitations by inmates for contraband deliveries. She absorbs humiliations and taunts and never denounces another prisoner. She gradually becomes a confidante of a variety of prisoners: black, white, single or multi-gendered, learning their lives, concerns, and hopes. Many were single mothers, perennially anxious that their children could be taken into foster care. Many were drug dependent: the lines for authorized “medication” were long. As Piper becomes closer to these women, she begins to see how her drug involvement had damaged others, whose lives were effectively ruined by drug use. At this point we are ready to admit she wasn’t so vapid after all. Such is our need for a morally satisfying story.

Community solidarity is so important in confinement. Piper became especially close to  “Pop” the cook. They shared reserved seats and snacks at movie showings, secrets and projects, as well as serious discussions about prison life and outside, which Pop might never see again. Another vital focus is food. One reader’s mother counseled during post-WWII years, “If you ever find yourself in a prison camp, make friends with the cook.” (The 10-year-old hearing these words did not think further than kitchen leftovers.)

Our Russian specialists recalled other books about confinement, a theme in Russian literature. In Dostoevsky’s House of the Dead, and A Day in the Life of Ivan Denisovich  by Aleksandr Solzhenitsyn, day-to-day survival is a common theme, and small acts of sometimes dangerous support are warmly treasured. Several participants’ stories of arrest and imprisonment enthralled us.

And life after prison? Wikipedia tells us that

“Kerman serves on the board of the Women’s Prison Association and is frequently invited to speak to students of law, criminology, gender and women’s studies, sociology, and creative writing, and also to groups that include the American Correctional Association’s Disproportionate Minority Confinement Task Force, federal probation officers, public defenders, justice reform advocates and volunteers, book clubs, and formerly and currently incarcerated people. On February 25, 2014, Kerman testified at a hearing on ‘Reassessing Solitary Confinement’ before the Senate Judiciary Subcommittee on the Constitution, Civil Rights and Human Rights chaired by Senate Majority Whip Dick Durbin. She was the 2014 recipient of the Justice Trailblazer Award from the John Jay College Center on Media, Crime & Justice. At present, Kerman works as a communications strategist for nonprofits.”