Thursday, August 19, 2010

"People die only once. They have no experience to draw upon."

Here is a very though-provoking, and heart-wrenching, article in the New Yorker that I highly recommend. As with many New Yorker articles, it is lengthy but certainly worth the time. It tees up the very personal and philosophical issue of how we face death, but it also raises issues that get to the heart of the matter on health care policy.


Deborah said...

Hank forwarded me the article you posted and we both have read it. I have been a hospice volunteer since 1993. I have seen what hospice can do. It is the most unequivocally positive thing I have ever seen in our health care system.
In the article I really liked the reference to Aetna experiment which allows patients to have Hospice and pursue ongoing treatment. I think that that would have really potential to help people see what Hospice really offers them. This both/and approach would also make it easier for MDs to propose use of Hospice or Palliative care..since the patient has nothing to lose... It is a win-win proposition. I hope lots of people read this article and share it with health care providers.

Hank said...
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Hank said...

It's a great article. I think that it highlights how passive patients are in health care decision making.

It seems to me that there are really two different services being rendered by hospice as Gawande describes it. It helps people deal with the reality of death, and it informs them about the choices they face and their real personal costs and benefits. While the first is the core of what we mean by hospice, and I think it's extremely important, the latter is central to the reduced costs and improved outcomes Gawande describes.

I've suggested that marginal costs in medicine currently far outweigh marginal benefits (suggesting an overallocation of resources). The study's Gawande cites indicate that the imbalance is huge. Even with zero financial incentive to reduce their consumption of care, patients, with just a little counseling, voluntarily choose less treatment because they believe it is in the interest of their well-being. Informed patients don't want more treatment even if its free. Not only have our expenditures exceeded an efficient level, they have, in some cases, gone beyond the point of satiety.

I think a more consumer driven system would make a huge difference in getting people to take responsibility for their own health care decisions. I have also suggested that there is a massive latent demand for information, advising, and counseling, and that a consumer driven system would unleash innovation in this important area.

Doctors simply aren't trained to deliver this service and I don't think they ought to be. Patients view doctors, and doctors view themselves, as technicians. Patients tend not to interfere with doctor's decision making because they assume it is a technical process best left to the experts. But, as Gawande shows so well, doctors themselves often face uncertainty about what is best for the patient. They act out of deference to what they think the patient wants, or to avoid a confrontation or painful emotional situation. Rather than having a primary care physician, people should have a primary care "nurse consultant". Someone who coordinates their visits to specialists, helps them understand their prognosis and their options, and who is trained to help them cope with the personal, emotional, dimensions of their illness. Your primary contact should be someone whose role is customer service.

Having your options laid out before you, having your well-being and quality of life be the focus of care, and being taught to serve as your own advocate and first responder are not things that we should have to wait until our final days to partake of. They should be at the core of our health system. While I think that this state would naturally arise in a system with appropriate, market driven, incentives, Gawande shows that, even without radical changes, this approach can improve outcomes and reduce costs right now.