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« 30 years of the AIDS epidemic: An alarming rise of infection among a new group | Main | Women in council: a better option for avoiding distractions? »

June 06, 2011

Comments

It is true that when it comes to health care, our personal fears are sometimes far different from what we would otherwise consider rational public policy. Even those of us who in our healthy states confidently declare that if such-and-such were to happen, we would not ask for such-and-such medical interventions. But if the scenario actually unfolds, we often change our minds and demand the best and the latest for ourselves and our loved ones.

Cost of health care would come down a lot if preventive care were accessible for the young and the healthy irrespective of income and palliative care rather than heroic efforts to "replace and renew" for the old and the terminally ill, were to become the norm.

Dr. Kevorkian who died recently had the right idea about those who are terminally ill, in great pain and in reasonable control of their faculties. I think he did a great disservice with his theatrics about assisted suicide by preventing a sober discussion to ensue among medical experts, ethicists and lawmakers. I may have linked to this article in The New Yorker by Atul Gawande once before. The 13 page essay is worth looking at in assessing what constitutes unnecessary health care expenditure.

The Gawande article is excellent, and lists more heartrending stories on wrenching end-of-life decisions : to hospice or not to hospice, along with some evidence that allowing patients with terminal illnesses to opt both for curative as well as hospice without excluding one or the other yields better overall cost improvement than forcing them to opt for one without the other. Maybe that should be one of the areas targeted , but will take a delicate touch in implementation as part of public health policy.

This discussion provokes a lot of thought and emotion in me. The telling sentence in the long Gawande piece, heartwarming but very sad, is this: "That last month, he said, the family simply focussed on being together, and it proved to be the most meaningful time they'd ever spent." In a way, the article makes a case for not fretting so much about the cost or extent of medical care in the face of looming mortality.

I wonder whether the making of public health policy by a group of people trained to look at the statistics and base their recommendation is, in a way, a good thing for the taxpayers. If those tasked with recommending policy bring their own personal stories of watching a loved one face death with or without unnecessary intervention into their deliberations, the human mind being what it is, is largely going to go for the emotion-based response rather than colder calculations. I wonder how they are able to dissociate. Or maybe it isn't so hard if they can somehow train themselves to view this as all happening to a vast and unrelated hoi-polloi.

Dean: A lot of these decisions are built on so many factors, family dynamics, culture, religion and attitudes towards death in general. But the question of cost and extent cannot be wished away. In India, where extreme measures to prolong life are prohibitively expensive, many families choose to abandon such efforts, while here in the US, where such treatments are available, it is more or less taken for granted that such interventions wiil be used to prolong the life, be it for just another day or another week.

Sujatha: I'm not arguing for wishing away the financial aspect. I'm suggesting that obsessing over medical care shouldn't be a priority. Instead, the focus on being together should be paramount, if that's where meaning and fulfillment will be had. The marathon dash to the end, the effort to squeeze out another day or two of "life," loses its value.

My experience with my father's last weeks, days, and hours, by the way, did not have much at all to do with mere prolonging of life. Instead, the emphasis was on so-called palliative care. But as I suggested in my first comment, I have a lot to sort through when it comes to these matters.

Sujatha, there are instances of prolonging life through extraordinary measures in the absence of any reasonable hope in India also although I submit that due to scarcer resources, such cases are far fewer than in the US. The patient in this recent report, is being kept alive not due to her wealth or a family who can't let go, but because of the determined and heroic efforts of her colleagues in the hospital where she still "lives." Aruna Shanbaug used to be a nurse and came to be in her present vegetative state in tragic and brutal circumstances. Please read the Indian Supreme Court's decision on a petitioner's legal challenge to keeping her alive.

I think I understand what Dean is saying and I don't think that he is disagreeing with or dismissing the issue of cost. There comes a time in life for most of us when quality is far more important than quantity. We just have to go through a process of success, failures, hope and disappointment before we come to terms with that realization. But I have seen very old and feeble people in considerable pain wanting to cling to life and much younger ones in hopeless conditions refusing further treatment. Our will to live is a peculiar thing; we can't predict what we will do when the moment of decision arrives for our loved ones or ourselves. That is why it is very important to talk about pain, suffering and palliative care way ahead of the actual event.


Dean, I'm sorry for misunderstanding your statement. Having no proximate experiences to yours, where you had a painful loss of your father recently, I was rather insensitive in trying to steer the conversation back to the 'cost' factor. As you say, it's the being together and quality of life at the end that matter, not the cost. Again, my apologies.


Ruchira: The issue of palliative care is trickier than most, especially in India. One of my mother's closest friends was dying of inoperable cancer, but kept in the dark by her family about it, until a month before the end. They denied her even the palliative care that could have kept her in lesser pain, just because they didn't want her to know how bad the cancer was. It was a horrible, horrible death.
With all the medical advances made, I sometimes wonder whether the earlier days of 'going out quickly' due to massive heart attacks,with not much possible by the way of interventions, wasn't a more merciful way of passing. Though, it would definitely have deprived the near and dear of a chance to say goodbye.

Sujatha, There is no need at all to apologize. I didn't feel you were being insensitive. I only wanted to refocus the discussion based on my reading of the Gawande piece, which highlighted a value at the end of life that isn't so easy to quantify. If we believe that, then we should promote meaningful togetherness well before a medical crisis demands it and, likely, upsets any stability that would support it. Like you, I wonder how merciful medically assisted slow death really is for everybody involved.

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