Being Mortal: Illness, Medicine, and What Matters in the End by Atul Gawande 2014
Atul Gawande is an American surgeon of Indian ethnicity. This book consists largely of stories.For example, there is the long story of Felix, a geriatrician in his 90s, who found meaning in his life through caring for Bella, his wife who was blind and suffering memory loss. When she died, he found solace in the fact that she had spent the last few weeks of her life, not in a nursing home or hospital as a lost and disoriented patient, but at home surrounded by the warmth of their long love.
Then there was Alice, who moved into a retirement village of her choice, but was not happy, probably because it just wasn’t home and because she was subject to ever-increasing control by the staff. After she broke her hip, she was confined to a wheelchair and completely subject to the rigidity of hospital life.
Atul also tells the story of how modern nursing homes and assisted living facilities emerged, replacing the awful poorhouses of the 19th Century. Interestingly, the aim behind nursing homes wasn’t to provide higher quality of life for the elderly, but to clear out hospital beds from long-stay patients. Because our society is largely in denial about death, we end up with institutions for the care of the elderly that serve any number of goals other than that of making life worth living for those too frail to fend for themselves. By contrast, assisted living facilities (the first was Park Place in Portland in 1983) aimed to give the frail elderly a maximum of control over their own affairs.
Then there is the hilarious story of how dogs, cats and 100 birds were brought into Chase Memorial Nursing Home. Initially, there was chaos, but gradually, the residents came alive again because the presence of these animals effectively countered the three plagues of nursing home existence. In place of boredom, they brought spontaneity, in place of loneliness, companionship, in place of helplessness, a chance to take care of another being. Surprisingly, it turns out that those who end up in palliative care do better than those who opt for normal medical interventions: they suffer less, are physically more capable and better able to interact with others.
Her conclusion is that we have forgotten what scholars call the “dying role.” People want to share memories, pass on wisdoms and keepsakes, settle relationships, establish their legacies, make peace with God, and ensure that those who are left behind will be okay. We have put the care of elderly in the hands of the medical establishment, even though medical professionals concentrate on the repair of health rather than the sustenance of the soul. Doctors have a tendency to inflict deep gauges at the end of people’s lives, interfering with their ability to carry out the dying role. We think there will come a time when our doctor says that there is nothing more medical science can do, and then we will move on to the other concerns around dying. Trouble is, there is rarely nothing more that doctors can do; far more likely is that there are any number of possible interactions that bring little benefit and likely quite a bit of suffering and a masking of the ability to handle the other tasks of the “dying role.”
A final story deals with Atul’s own father. Many and complicated were the decisions that needed to be made regarding his health, often with incomplete knowledge about the risks and possible benefits. When he finally died, Atul had the task of spreading his father’s ashes in three different places; Greece, the States and the Ganges river, where tradition promised that this would liberate him from endless reincarnations and allow him to achieve nirvana. Atul did not share this belief but appreciated that it enabled him and his father to be part of a greater whole.