"Our reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people and denied them the basic comforts they most need. Lacking a coherent view of how people might live successfully all the way to the very end, we have allowed our fates to be controlled by the imperatives of medicine, technology, and strangers.”

Dr Atul Gawande’s point in Being Mortal: Medicine and What Matters in the End, is simple: Whether it be the design of ‘old homes’ or care for the terminally ill, we have allowed the imperatives of longevity and staying alive, the main aims of care providers and health professionals, to determine the way we treat the elderly and the seriously ill.

Quality of life — autonomy, dignity, being the writer of our own story — an important consideration for the old, the ill and their loved ones, has been more or less ignored. But eventually, argues Gawande, it is quality of life that should be central to how we think about aging and dying. This is not about assisted suicide or similar practices; this is about the importance of the patients’ priorities as being distinct from the aims or dynamics of the medical establishment.

Though Gawande’s experience as a surgeon offers him many opportunities to see the limitations of the current medical setup on this count, it is his father’s illness that brings home the point most forcefully. His father, a doctor himself, had a rare growth in the spinal column. From early on it was clear that the growth could not be fully excised and that eventually it could lead to paralysis. Gawande sees his father’s slow decline, sees the choices he makes about what is important to him, and how treatments had to serve those priorities and not the other way around. Gawande also realises that the medical establishment was not really in good sync with his father’s preferences.

Modern medicine and societal developments have, especially in developed countries but increasingly in developing ones too, allowed people to live longer and better lives. Sudden deaths of people in their 30s or 40s are now rare. Instead, many people live into their 70s and 80s. With modern surgical and medicinal interventions, a lot of diseases, even if not curable, allow people time. But we are mortal, all too mortal. Even if a disease does not take us, we start getting frail in our old age, and eventually die.

Hospitals were designed to make usually drastic interventions and get us back on our feet. They were not designed for managing chronic illnesses and/or old age and frailty. As the need for these services grew, institutions like old homes, rehabilitation centres, hospices and long-term care facilities came about. But their designs were mostly dominated by the approach of the medical profession: how to make people better, make them live longer, and not necessarily how to improve the quality of their lives.

Basic needs have primacy, as Maslow argued, but human life is more than that. As Gawande puts it, it is about “being the authors of our lives”. “The battle of being mortal is the battle to maintain the integrity of one’s life — to avoid becoming so diminished or dissipated or subjugated that who you are becomes disconnected from who you were or who you want to be.” This thinking has not been internalised by medical professionals and care institutions.

The training provided to healthcare professionals does not prepare them for holistic care. Their incentives, set by the profession, insurance companies and the dynamics of their jobs, are not in line with the priorities of those who go to them for care. The doctor or caregiver, instead of just being the expert, has to be an interpreter as well: he or she should give options and trade-offs so that people can decide for themselves and their loved ones.

Even geriatric care professionals are not trained to be interpreters, Gawande says. Furthermore, there is a dearth of doctors and caregivers in the area of geriatrics as it is not considered to be exciting, heroic and dynamic enough a field by most current and aspiring healthcare professionals. But, the need for geriatric care in societies that are past the demographic bulge is rapidly going up. In Pakistan, the field is almost non-existent.

In most societies we will not be able to train enough people in geriatrics in time to look after the old and ailing. A better policy option is to train all caregivers in the basics of geriatric care. This requires introduction of relevant courses at the initial level of medical training. But this is an uphill task, even in countries like the US. In a way, Being Mortal is also a plea for this change.

Sickness and debility are not easy to go through or manage. It is hard to see a loved one go through pain, decline, frailty, increasing dependence, and death. But with increasing lifespans and modern medicine’s ability to slow down and manage more and more diseases, we are likely to see more of this: for our loved ones and for ourselves. We have to design health services in ways that can provide the best possible care for people: where the trade-off between quality of life and longevity is sensitively handled while preserving the autonomy and dignity of the patients, and where the wishes of the recipient govern the decision-making process.

Gawande goes through a number of case studies in detail to show how different people handle various healthcare issues. Some opt for trying every procedure they can, even when the chances of success keep diminishing to the point of becoming an impossibility, and in the process make their lives very difficult and restricted to being in hospitals or other care-giving institutions. Others choose time with family and friends over treatments, with minimal interventions from the medical side. And still others are in the middle, or vacillate in between. But in almost all of the cases Gawande discusses, seldom are doctors and other medical professionals trained enough to be able to actively help patients and their families make the right choices: choices that are in line with the patients’ priorities. It is only with the development of hospice care, which is still not a widespread or very integrated practice in most hospitals, that we are starting to see some change.

Towards the end, Gawande’s father chooses not to undergo high risk treatments, instead opting for peaceful time with family at home. This is not an easy choice to make — for those unwell or their families. But given the fact of our mortality and the limits of medicine, it is a choice that many have had to make and will have to make. It should not be made more difficult by a medical system that is under its own inertia of trying to preserve life at all costs, even at the cost of quality of life. The task, in many ways, is for all those involved in providing health care to realise this.

Being Mortal: Medicine and What Matters in the End

(HEALTH)

By Atul Gawande

Metropolitan Books, USA

ISBN 978-0805095159

304pp.