Review by K Srinath Reddy
Book: Being Mortal
Author: Atul Gawande
Price: Rs 599
Srinath, I have a request. All my life I have lived with dignity. Please ensure that I can die with dignity.” My former principal at Osmania Medical College, a retired neurosurgeon in his 80s, said this to me with quiet composure when he was admitted to the Coronary Care Unit of the All India Institute of Medical Sciences (AIIMS) with a third heart attack that he suffered while visiting his daughter in Delhi.
It is this elemental desire of the elderly, to age with grace, retain their autonomy, remain connected with a world that still values them and finally ease out of life without unduly prolonging their suffering through reflexive use of unfeeling and often unhelpful medical technologies, that is poignantly portrayed by Atul Gawande in Being Mortal. It is a book that distills the wisdom of philosophy, psychology, biology, economics and ethics and then wraps it up in elegant writing that blends captivating storytelling and sharp comment, to provoke the reader to ponder over the essence of life and the imminence of death.
Gawande first deals with the needs, challenges, anxieties, aspirations, priorities and simple pleasures of the elderly as they course through a period of life where their physical and mental faculties are progressively diminishing. He also presents the perspectives of their children and other family members, physicians and other care givers, to show how their well-intentioned concerns can often conflict with the quality of life that the elderly earnestly desire and highly value.
As one enters the “golden years”, there is increasing need for attention to structure (biological integrity of body parts and their coordination), function (physical and mental ability to carry on with daily living with minimal dependence on others) and participation (social engagement with family, friends and an external world that grows less familiar by the day). While healthy living in earlier years can make the elderly fit and functioning rather than frail and feeble, the reality of multiple physical and mental impairments falls to the lot of many as they age. Falls and fractures, loss of sight and memory, and a variety of chronic diseases ranging from heart failure to diabetes and cancer to dementia, are common causes of disability and suffering. Multiple disorders and disabilities can co-exist in elderly persons. Coping with them is a challenge not only for those who bear the burdens of age but also for those who love and care for them.
Gawande draws us into the conflict between the determined desire for autonomy that the elderly express and the overwhelming concerns for their safety that lead their children to shackle them. The parent resents the restraints on personal freedom and enforced separation from home and family that institutionalised care imposes while the daughter or son is worried that the enfeebled father or mother will come to harm if left alone, unaided and unsupervised, even briefly. He gently reminds us that, in the winter of their lives, the elderly crave for sunshine that freedom, companionship and self-worth bring and not the warm blankets of safety that smother the spirit.
We learn how recognition of the need to combine autonomy with safety and mental well-being with physical care has led to innovations that have steadily moved elderly care from prison-like hospitals, through custodial confines of un-empathetic nursing homes, to assisted living in customised, people-friendly institutions or even in their own homes. While tracing the evolution of elderly care, mainly through the American experience, Gawande also draws on his Indian roots to illustrate the support and status lovingly and loyally offered to his grandfather by a large joint family. The rural nostalgia dissolves into horror when he also narrates the plight of elderly destitutes cruelly discarded by their well-to-do families in modern-day Delhi.
In the latter part of the book, Gawande takes us on to the even more difficult emotional terrain of preparing for and meeting death in case of terminal illness. Whether young or old, this is not an end run we are trained for. This transition from life to death is made even more difficult by the mindset of modern medicine which sees death as defeat and end-of-life care as a battle to be ferociously waged for the pride of science, whatever be the price of protracted life support and prolonged agony. He tells us how priorities change as we move towards death, prizing hours spent in the company and embrace of loved ones, over added days in impersonal intensive care tethered to tubes and machines. Patients and families have to make difficult decisions on when and how far to persist with treatments that extract a toll on quality of the remaining life. Doctors and nurses need to assist them in doing so, by understanding not only the gains and limitations of the medical approach but also the specific emotional needs and preferences of the patient. Among other life stories, Gawande narrates how his family experienced this through his own father’s illness. The book calls for a transformation in the way the world deals with death, though it avoids the controversial topic of euthanasia.
Despite the title, this is by no means a melancholy book. In its pages, we meet inspirational figures who innovated new approaches for providing assisted care in settings that promote autonomy or transformed a gloomy institution with listless patients into a lively caring and sharing community by bringing in plants, dogs, cats and hundreds of birds. We are touched by the tales of hospice care providers who deliver compassionately competent care to the terminally ill and self-sacrificing geriatricians who are happy to deal with the whole person rather than individual organs despite lack of professional rewards.
This book is strongly recommended reading for everyone because we all have to deal with issues of ageing and death, personally or in the family, now or in the future. Even as it speaks of mortality, it tells us how to make the best of life.
Srinath Reddy is president, Public Health Foundation of India and was formerly head of Cardiology, AIIMS, New Delhi