Thursday, February 1, 2018

Reflections on palliative care in India: a long goodbye

Those who read the papers regularly will notice two kinds of obituary messages. “Mrs. So-and-so passed away peacefully in his sleep. She was 82, and is survived by ….” or “Mr. ABC succumbed to Cancer after bravely battling it for over 6 months. He was 79 and is survived by....” If a detailed article is written after the passing of the latter, it may eulogize their life, and make a brief mention of “the brave battle with cancer” and that they were hospitalized for months. Such an article may or may not make a mention of the “brave battle” the family and caregivers undertake.

My dad has been bedridden at home for the past six months, requiring constant care and attention for his daily needs. While caregiving has certainly been at the forefront of my daily routine, it sometimes takes an outsider to notice the pace of decline. A couple of weeks ago, an uncle of mine stopped by to visit my ailing dad. He later took me aside and quietly sobbed, and remarked about the “unfairness” of life. He simply said “we are praying for his peaceful passing.”

To be fair, my dad has led a rather eventful and fruitful life, rising from humble beginnings before retiring as a proud Officer in the Indian Air Force. After retiring from service, my parents continued to live on their own and traveled to scores of temples across South India well into their seventies. This rather active retirement gradually came to a halt after we found out that my dad had stage-4 Prostate cancer, which had metastasized, but by itself was not debilitating. Only subsequently after he was diagnosed with Parkinson's that his movements gradually slowed. What started as a gradual tremor in the hands progressed to the rest of his limbs. In a span of the following year, a combination of these and old age eventually knocked him over.

About five months ago, my dad got feverish and had to be hospitalized. Turns out he had a mild stroke, after which he lost the use of his right arms and both legs.  After a battery of tests and reviews, a panel of doctors said they had exhausted available medical options and that “palliative care” was the next course of action. I was a bit surprised by this in-your-face advice, more because it was delivered matter-of-factly, without sugarcoating. When I asked for further clarification, the senior resident was just as cryptic “We are just medical professionals, not gods. Just pray for some peace moving forward, and continue to provide him comfort.”

Every few weeks, dad's condition seems to take a dip, making us scramble while we come to grips with the new reality. His slow, slurred speech has reduced to a few gurgles, and he spends most of the time motionless in a slumber. Feeding solids have given way to semi-solid gruel supplemented by baby food. Perhaps the only redeeming factor here is that he seems to be cognitive and responds in a low gurgle or squeeze of hands when spoken to.

[ Counting one's blessings: video of little Vijay with his grandpa ]

The Philosophy

The Hindu philosophy that I loosely follow talks about Karma : actions, and the spiritual principle of cause and effect where intent and actions of an individual influence the future. Even without a deeper  philosophical reflection, many of us recognize that caring for an elderly parent is a part of one's Karma; after all they were there to nurture and guide us when we were young and impressionable. Paying that 'debt' back is the least we can do. If an extended palliative care before passing is in an elder's 'Karma,' who are we to argue?

The Hindu philosophy also makes fundamental assumptions of Saṃsāra, the theory of rebirth and "cyclicality of all life, matter, existence." When the body dies, the Atma (soul) leaves the body. In a tacit acknowledgment of the finality of death, Hindus cremate the body since the soul doesn't come back in the same form. It does not require a philosophical grounding to acknowledge the obvious: all who are born, must eventually die. The philosophy and scriptures, are however intentionally vague about the 'process' of death and dying which will be unique to an individual.


Even a generation or two ago, extended families in India lived under a roof, and caring for an elder, perhaps even palliative care was a non-issue. As urban Indians move towards 'modern' nuclear family structures, family-support for caregiving can be a trying experience, especially when it comes to extended palliative care. Those of us who can afford to, hire caregivers to assist with day-to-day needs, but even with such help, palliative care overwhelm the extended family.

Caring for a sick and infirm person takes a lot of emotional resilience, more so when the prognosis is a  terminal-end, and one is facing a downward slide that follows a textbook pattern (link). When a terminal patient suffers, caregivers and family suffer in equal measure. Caregivers may find it hard to sometimes suppress thoughts, of a peaceful and speedy end.

One sometimes reads of people in dire straits occasionally contemplating drastic actions by 'taking things into their hands,' although such thoughts and actions are unthinkable for most of us. A living will, and Euthanasia are things one reads about, though one generally does not encounter in real life.
A few weeks ago, social media was buzzing over an elderly couple's plea to the Indian President seeking permission for 'active euthanasia' (link). While that appeal made headlines. and will almost certainly be ignored by the President, it just highlights the reality that the couple are confronting as they grow older.

In most cases, the caregivers and families bottle up their emotions, and focus on the present and try to make the little time left with the loved one comfortable.

Dad with caregiver

It takes a village to care for an elder... but not all think alike

I sometimes reflect on my dad's inner strength to continue to bravely fight the fight, and the utter lack of self-pity that he has demonstrated. Of course, his resilience is reinforced by the resolve around him. My aging mother has taken her marriage vows “ sickness and in health,....” quite literally; dedicating her time and energy to caring for him. Her initial prayers to 'get him back to normal' have been replaced by a more pragmatic prayers for continued peace and comfort.

Needless to say, not all families or even members of a family will react to these circumstances in the same way. For instance, my brother who lives thousands of miles away in England has been trying to stay updated on dad's condition. Although not in denial after a quick trip to visit dad, he harbors optimism. He perhaps believes that a miracle might just occur.

Our 8 year old, on the other hand, is a bit overwhelmed by the life-lesson unfolding in front of him. He has mostly been keeping his feelings to himself. The other day, he opened up a bit, and began telling Suja about his latent feelings for Thata (Grandpa). He said he was finding it really hard to go and greet Thata, "lying in his bedroom in this condition.” adding, “It is hard to see him like this. Even a few months ago, Thata used to ask about my school-day. Now he is only able to make some grunting sounds. I wish he were at least able to speak again.”

A redeeming factor in the gradual decline is that it has given us enough time to sit back, observe, reflect while we continue to provide the best care and comfort one can. The extended nuclear-family – mother, dad's caregiver, my wife and our little son - are involved in various aspects of the planning, logistics and care-giving. While dad goes through the gradual stages of withdrawing from the world, we continue to be around, although we continue with our daily life.

Paraphrasing an old adage; it still takes a village to care for an elder.


Related post : A review of cottage industry around ‘elder care’ in India

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