A fortnight after Ganesha idols are immersed in the sea, pitru paksha is observed in many Hindu homes in India. It is a period of thanksgiving to the ancestors and rituals are performed in the memory of the dead.
This somber period ends on the new moon day when Dusshera celebrations take off.
Today, many of us believe that taking care of the elderly when they are alive is better than ritualizing their death long after they are gone. How has the modern world of money and comfort altered our attitudes about dying?
Atul Gawande’s brilliant book, Being Mortal, should be made mandatory reading for those of us who struggle with the choices we have to make when we are terminally ill. An accomplished surgeon himself, Gawande argues that death is a battle we can never win, but we end up fighting to the end, hoping that modern medicine will snatch a few more years of life for us. In the process, we trade off the quality of our last phase of life, for an uncertain future. We simply fail to see what matters the most of us.
Economic development shapes medical care in a country. When a country is poor, lack of medical facilities leads to avoidable deaths, even among the young. The elderly, who are unable to afford medical attention even if they are seriously ill, just pass away without help.
As income levels grow, demand for medical facilities increases and people choose hospital admissions as the preferred option for taking care of the aged.
As incomes rise further, the cycle turns and people care about the quality of their lives the most and choose hospice and palliative care at home over dying at the hospital.
The rise in medical facilities in India, especially in the private sector, appears to have coincided with the rise in the economic prosperity of its citizens in the last 25 years. The growth in the market for health insurance has also gone along with the rising incomes of the population. We, therefore, are at that stage of economic development where either because we can afford it, or because we have insurance to cover the costs, we choose hospitals over home care for the terminally ill.
This preference, however, has created a situation where the biggest fear for the retired is the fear of illness. It is common to imagine that any diagnosis of dreaded diseases like cancer, or any situation of a failing vital organ such as the liver or the kidney, should be treated with as much medical attention as one can afford.
The size of the ICU units in private hospitals has grown to keep more and more people on life support. They are on ventilators, fed mush through tubes and their excretions managed through awful contraptions. This need not be the default choice. Gawande’s book shows how tough it is for both the diseased and for those who care for them, to make decisions about end-of-life choices.
It is not easy for a 90-year old to decide whether dialysis should be the choice for their failing kidneys. They cannot always articulate what they want. It seems cruel for an otherwise well-off son or daughter to decline a choice offered by the hospital to prolong their parent’s life. Most simply sign up for one procedure after another out of guilt, righteousness, confusion, moral or social coercion. They hope to buy a few more years of life.
But they end up with the added time that severely compromises the quality of life for the elderly, whose deepest desires in the last few months of life might just be to eat ice cream, watch the sunset and hear the grandchildren sing, rather than lie confined to bed in a sterile hospital room.
Instead of focusing on financial planning for retirement as the only way to fund the mounting hospital expenses for the aged, it might be humane to relook at diseases that come with age as those that must be managed with the best possible choices for preserving the quality of life.
Finances can be allocated to 24-hour care and comfort at home, instead of being spent on hospitals and procedures. My teetotaler father developed a cirrhotic liver, whose only cure was a transplant. He decided that a young person who has a family to support should make use of the scarce organ available for the implant, rather than him at the age of 70. He was cared for by a specialist through the last four years of life, with the objective of keeping him comfortable and in minimal pain. Finances can be allocated to 24-hour care and comfort at home, instead of being spent on hospitals and procedures. My teetotaler father developed a cirrhotic liver, whose only cure was a transplant. He decided that a young person who has a family to support should make use of the scarce organ available for the implant, rather than him at the age of 70. He was cared for by a specialist through the last four years of life, with the objective of keeping him comfortable and in minimal pain. He passed away at home, cared for by his loving wife.
However, when my mother was unexpectedly diagnosed with tuberculosis, she was only 67. We expected that the standardized drug regimen would cure her. But she developed severe complications from the medication. We were all focused on her treatment, but all that she wanted was to return to Chennai where all her relatives lived. She wanted to see them all. Even as we admitted her to a corporate hospital with top quality care, her focus was on her visitors and the conversations. She did not care for anything else. The doctors continued to provide us with information about her condition, and we signed up each time an alternate course of action was advocated. After three weeks in the ICU of which the last three were on a ventilator, she passed away.
When I read Gawande’s book I realized how righteously focused we were on fighting the war for her life, while what mattered to her the most was being amongst the large extended family that she was a part of. I protested a lot about moving her from Mumbai to Chennai, but she won that final argument with me. She was not scared to death, but she did not want to be alone as she prepared to go.
Old age care for our generation is a much-discussed topic in our circle of friends and relatives. Most ask me about how to finance prolonged hospital care. Perhaps we should take a step back and begin to discuss what matters the most to us in the last years of our life, and how we should protect and preserve that without sacrificing our self-respect and control at the altar of costly, but excessive Medicare.
Source - Economic Times
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