Living Life (Rather than Dying) With Dignity

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San Francisco – Bestselling author and surgeon Atul Gawande sends a strong message in his best seller ‘Being Mortal’ (Henry Holt & Company, New York, 2014) to medical practice and patients to prepare more for life rather than for death.

Gawande suggests that by medicalizing aging and dying as a clinical rather than a natural human (and one can add humane) process, it is depriving entire generations of seniors to live their declining years as fully and meaningfully as possible. As book reviewer Katherine Boo rightly asserts, deeply affecting and urgently important, Gawande’s book is “not just about dying and the limits of medicine but about living to the last with autonomy, dignity, and joy.”

Modern medicine undeniably has effectively tackled and in many cases overcome the life-threatening dangers from disease, childbirth, and injury, but it has fallen short of accepting and respecting what Gawande calls the inescapable realities of aging and death. Not recognizing what medicine can or cannot do runs counter to what it should. Even as doctors and families are committed to keep the sick well and alive as long as possible, they and the healthcare system have missed out on how to help patients to make life as it draws to its close more meaningful and as close as possible to ‘normal’ let alone joyful.

A practicing surgeon, Gawande captures the struggles of his profession along with its failures and limitations in addressing the inevitability of death. The lack of courage and transparency in coping with dying has compelled the medicinal world into keeping its triumphalist myth alive. Through poignant anecdotal and academic evidence, the author weaves a telling tale of how medicinal thinking reinforced by family values creates an ethos of false expectations in turn causing avoidable pain to the patient as well as avoidable costs to the family and the healthcare industry.

Uneasy to spell out the certainty or higher probability of death and reluctant to address patients’ and families’ anxieties about dying, doctors continually rely on false hopes and treatments that may not lengthen lives, or in some cases could actually shorten them, while also making the closing chapter of life less meaningful. The nursing home industry has stepped in aggressively to take over the last phase of human life and offer patients the assurance of clean regimented care, but not necessarily the autonomy and dignity that patients need and care to retain right till the end of their lives.

Tackling his own cancer-struck father’s dying years, Gawande demonstrates how intelligent choices can be made in consultation with the dying and/or their families to bring realistic treatment choices and lifestyle options to the ‘dying’ patient. Whether observing a geriatrician, or a nurse on her rounds in a hospice, or seeing the impact on patients and healthcare in nursing homes that follow a reformed patient-knows- best approach to medical decisions and care regimens, the author builds a convincing case for having hard conversations that minimize the fear and restore confidence in patients and their loved ones that when death is more likely, it is better to guide the patients through key steps and outcomes enabling them to make not fanciful but realistic choices to live out their balance time.

Critical to this transformation is how we approach aging. In the Indian tradition, as we all know, aging is perceived holistically as “natural” and its limitations therefore are required to be accepted with grace, not denial. Gawande contends that by denying decrepitude and averting our eyes from the reality of aging, we inflict costs. We “put off dealing with the adaptations that we need to make as a society. And we blind ourselves to the opportunities that exist to change the individual experience of aging for the better.”

What he suggests is to focus on helping people “manage” the aging process rather than “fixing” its limitations. As his Geriatrician respondent notes, “The job of a doctor is to support quality of life” i.e., “as much freedom from the ravages of disease as possible and the retention of enough function for active engagement in the world”. If a patient is becoming infirm, that is not a medical issue treatable with a quick one-time fix, but an inevitable limiting condition that requires to be assisted on a sustained basis.

In this approach, lung biopsies and back or knee surgery or plastic surgery are not palliative. But keeping the patients’ own and living environment safe and clean, ensuring patients’ safety in home and their mental and physical hygiene wholesome to minimize infection risks and avert sense of emotional and physical isolation are. The latter approach is not profitable to the medical industry or its practitioners unlike fancy medical procedures that are. Moving aged to a care facility is so much more costly and therefore profitable for providers than keeping the aging at home and in independent (but when required assisted) living.

Importantly, as Gawande notes, “It is not death that the very old tell me they fear. It is what happens short of death – losing their hearing, their memory, their best friends, their way of life.” While eating well, exercising, keeping our vital signs such as blood pressure and sugar level under control, getting medical help when we need it, we seniors can manage aging up to a point, a stage comes when mentally and physically we become too feeble to retain control of our functionality. That is the stage for which we have to think and prepare as we step into our senior years.

Issues that should be compelling us at the individual level are: Where will we move, and to what? What costs are entailed? Do we have provision for it? Do we prefer to be at home and have someone manage our condition or do we prefer to be in an old-age home? How well is our family ready to support either pathway for us? But then at the societal level, there are equally demanding choices to be made and implemented. Do we have nursing homes and hospices to adequately address our aged population’s needs, to match their socio-economic and educational level? Do we run the homes like prisons and military boot camps or like sensitive home-like institutions where age is not viewed as a barrier to, or disqualification for, meaningful dignified life.

Gawande offers the above and many more enriching thoughts and examples of positive care for the aging. The book fittingly should be required reading for all those entering, in, or contemplating twilight years, as also those likely to be bearing the burden of care.

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