A dignified end


Elderly care is becoming a significant area of interest in India, given that life expectancy has gone up considerably, with reduced family and other support systems. Dr. Rajam Iyer talks about management of the elderly, and palliative care, a nascent area in Indian medical science, and what it entails.

Wrinkles should merely indicate where smiles have been. 
–Mark Twain

IIndia today has over 100 million people above the age of 60 years. This number is growing at a steady pace, as a result of modern scientific capability. It is estimated that by 2050, 16% of the world’s population will be above the age of 65, accounting for 1.5 billion elderly, compared to 5% in 1950. Fifty percent of the elderly live in low and middle-income countries.

The purpose of this article is to highlight the issues faced by older folks, and to propose a way where they are treated with dignity and respect. Also, I will discuss ways to empower the elderly and their care givers with knowledge to make a planned, informed decision through health, illness, emergencies and terminal phase.

Longer lives, but quality?
We are living longer, but not necessarily well. Scientific advances have changed the process of ageing and dying into medical experiences to be managed by doctors, which health care professionals are totally unprepared for. Unlike the past, only about 10% of people die suddenly, the rest go through a bed bound stage with a chronic prolonged course of uncertainties.

Most adults die of a chronic non-malignant disease which they have had for a long time, along with other co-morbidities. According to published literature, half the people over 65 years have three co-existing chronic conditions, and one in five have five or more. These are musculoskeletal, psychiatric, cognitive and chronic pain related problems, each with high symptom burden and disability. Causes of death, globally, in the age group above 65 are largely ischemic heart disease, cerebro-vascular disease and lower respiratory disease. Out of the 8.4 million people who die in India annually, 1 million deaths are due to cancer, and approximately 5 million deaths due to chronic diseases.

Traditionally in our country, the joint family system took care of our ageing members without all the complex managerial issues we face today. In Atul Gawande’s book, Being Mortal, he describes the contrast with which his grandfather was cared for in his last days in India, with the geriatric population in the west. In his book, he writes that in contemporary societies, old age and infirmity have gone from a shared multigenerational responsibility to a private state, something experienced largely alone with the aid of doctors and institutions. Global economic development has provided more opportunities for the young and resulted in them leaving home for a better and prosperous future. This has only made care of our elderly challenging.

The malaise of the elderly
Among the elderly, a group of them will not die due to any specific illness, but general slow progressive frailty. For these elderly, the increasing functional and cognitive decline leads to a gradual loss of functional reserve, susceptibility to illnesses, and inability to recover from them fully. Many will require long term care and assistance at home, and sometimes when this becomes inadequate, admission to a nursing home or care home becomes a necessity.

With advancing age the elderly face a number of challenges, including physical, psychological, nutritional, social, financial and spiritual. The once energetic, in-control individual experiences significant alterations physically. The changes are seen from top to toe, with diminution in memory, hearing, vision, height, stamina, reflexes, digestion, balance, bone and muscle strength, skin quality besides major organ disease. Inadequate diet due to multiple reasons and polypharmacy, contributes harmfully to the situation.

The consequence of these physical declines leads to a fall in confidence for activities of daily living. Presence of any chronic disease only compounds the issue, increasing dependence and the experience of loss of a role in the family. Further, inability to move about effortlessly isolates them socially, unable to carry out routine activities and meet relatives and friends. With reduction in social interaction, or when elderly live alone, depression can set in. Weight loss is noted often as a symptom indicating depression. Even with family support or elderly living with children, inadequacies are seen, as the caregiver often need to juggle their own work, family and childrens’ responsibilities. Lack of financial stability in the aged only confounds the situation.

Elderly who live on their own, have complex practical, emotional and physical needs underlined by a desire to be independent and maintain a sense of dignity, especially as they approach end of life.

Enter, palliative care
The time has come to realise the significance and necessity of including and integrating palliative care for a holistic assessment and support of the aged population, along with their carers. Palliative care, by definition, is the total care of a patient diagnosed with a chronic life limiting disease, along with his caregiver. It addresses the physical, psychological, social and spiritual pain of the patient and his family.

In many chronic diseases, like diabetes, high blood pressure, smoking related lung diseases, pulmonary fibrosis, stroke, neurodegenerative conditions (e.g., Parkinsons, dementia etc.,) there is no cure to offer. But we can and must strive to alleviate suffering. Doctors, unfortunately, are trained towards diagnosis, curing and saving. In the process, we rarely care for our patients or comfort the relatives. Palliative care focusses on improving the quality of life of patients and their carers. It is a multi-disciplinary team with health care professionals, counsellors, physiotherapists, nurses, volunteers, dietician. The focus is the patient, and we attempt to address his total pain.

In the elderly, with or without a chronic disease, the constant thought frequently is regarding death, especially the process of dying. Although death is a certainty, most doctors, are uncomfortable to discuss this with patients or carers. Often, patients too dislike a conversation regarding their own mortality. The probability of the inevitable, increases in the elderly and those with chronic life limiting disease, so it becomes imperative to initiate difficult conversations with the patient and family before a crisis.

A personal experience
Citing from my own personal experience, I have been the primary carer for my parents since my sister moved to Australia, in 1984. With the blessings of the almighty, my parents enjoyed a healthy active life with travel, independent living, till 2010. Then the decline began, and their health deteriorated alternately, slowing them and making them dependent on additional carers at home. I noticed the difficulty with which they accepted this change. The physical slowing affected them emotionally, psychologically, socially. At that time we did all what we could. Frequent visits by my sister and family, aids to help them walk without falling, wheel chair for mobility outside the house, shower chair, bath mats, railing around the house to ensure safety were all in place.

In October 2015, my father, aged 88, suffered a stroke, despite being on blood thinners. We brought him home after the initial scan, knowing that no heroic treatment can be offered to an 88-year-old diabetic with irregular heart rate on a blood thinner. The agony, over the next three weeks, of seeing him lose consciousness, be totally at the mercy of caregivers, and become a changed person, was excruciating to watch. At this difficult time, friends, re-assured me constantly that it was right not to hospitalise him. It took us multiple family discussions about stopping his regular medications, insulin jabs and feeding. Not feeding him became an emotional decision, and we continued that till the end.

Nobody can be prepared for the emotional trauma of losing a loving, affectionate, indulgent father, but on hindsight, our family is relieved that he suffered minimally, and we did everything in his best interest, causing him least harm. When it’s not possible to continue life in a meaningful manner, prolonging life is equal to torture. Being a doctor, I needed abundant handholding, advice, reassurance and support during such a trying time. Patients and their families, with any chronic life limiting disease, requiring multiple hospital admissions must need even more support, advice and compassion.

This is the primary aim of palliative care – to offer comfort and care when cure is impossible. In order to avoid chaos during emergency, it is vital to initiate conversations with patients and their families, especially with chronic life-limiting diseases or in the elderly. These communications are difficult, needs skill and tact, and involve significant time to reach a conclusion. The multi-disciplinary palliative care team, inform details of the disease, its natural course and outcome to assist patient and his family to reach a conclusion. Documentation of the patient’s wishes on how they would like to be treated in an emergency eases the stress on caregivers, and helps doctors to offer a pain and symptom free end with dignity, surrounded by loved ones, in their preferred place. India ranks amongst one of the world’s worst countries to die in, according to a paper published in The Lancet, 2015. A good robust palliative care policy along with the able support of the government and laws enabling doctors, can help alter this depressing statistic. Palliative care is a human right and we need to work towards creating a nation wherein the citizens get timely and appropriate palliative intervention.

Today, doctors continue futile aggressive treatment due to lack of proper laws backing them. Narcotic drugs, like morphine, which is a cost-effective wonder drug especially in a terminal setting, is not easily accessible to patients. Knowledge regarding palliative care amongst the general population, especially patients, needs to be established, and the right to refuse fruitless treatment must be emphasised. Lastly, the time has come to train doctors during their graduation in the principles of palliative care, so that we produce a generation of compassionate, thoughtful doctors, capable of holistic care.

Dr. Rajam Iyer

Dr. Rajam is a practicing palliative care and pulmonary physician, with a focus on end stage respiratory diseases, trained in Mumbai and the UK. She is presently pursuing a fellowship in palliative medicine from the Institute of Palliative Medicine, Calicut. She works at The Bhatia hospital, Mumbai, and a private clinic in Mulund. She is also part of a network, formed recently in Mumbai, to promote awareness and spread knowledge of palliative care. She loves to travel, read, music, and meet new people.