End of life talks

Important article in NY Times describing a paper in Cancer, addressing the issue of doctor/patient communication around dying....do doctors level with patients, when in the disease course, and to what effect? What determines when and if they have 'the talk'? Lost in all the hysteria of death panels that didn't exist this past year are the real issues surrounding how Americans approach the end of life. This relates not only to issues of cost, but also patient preferences, autonomy, family dynamics, and what it means to maintain a sense of hope while a person faces a terminal illness.

Some of my past work with colleagues from Duke has shown that hospice saves Medicare money. And most people use hospice for a relatively short period of time before death, meaning that many users (7 in 10 in the study above) would have saved Medicare more money had they used it longer. And, most work on length of hospice use suggests that you cannot receive the full benefits in terms of palliation from relatively short lengths of use. So, hospice would appear to be one of the few areas in which increasing something both saves money AND improves benefit. Typically, we are left with an intervention that costs a great deal and produces some benefit and deciding whether it is 'worth it'.

But, there are problems with the hospice benefit as conceived in Medicare. Notably, one must unelect 'curative' care to receive hospice. I put 'curative' in quotations because as I heard Joanne Lynn, a hospice expert say several times 'if we could cure it we would.' But, the initial hospice statute from 1982 uses the phrase curative....they mean 'all the expensive stuff.' This may delay selection of hospice by patients who may be interested in aspects of this approach, but not soley. Other issues include the effect of having a caregiver to allow one to practically utilize the benefit (most hospice care paid for by Medicare is delivered in patient homes). And my colleagues from Harvard Haiden Huskamp and David Stevenson and others are writing about altering the hospice benefit for patients of nursing homes (essentially bundling hospice to the nursing home and making them the purchaser of hospice services).

The Medicare hospice benefit is a key place for end of life policy making, in part because it provides a classic example of Medicare as an insurance innovator which is counter-intuitive to many [and 83% of those who die each year are Medicare beneficiaries]. Medicare has been the source of most large insurance payment innovations in the U.S. in the last 30 years (prospective payment, DRGs, RBRVS). Here is another column I wrote that discusses Medicare and end of life spending.

I recently received a grant from the Agency for Healthcare Research and Quality (AHRQ) along with my colleague from Duke's Cancer Care Research Program Amy Abernethy and Marion Danis from the Department of Biotethics at NIH to study patient and family caregiver preferences when a patient is facing a Cancer diagnosis with an expected survival of 6 months or less. We will be adapting Marion's Choosing Health Plans All Together (CHAT) tool to this patient population. Ultimately, learning more about patient preferences could be used to guide policy in how we treat and finance end of life. We are especially interested in potentially altering the Medicare hospice benefit to allow for the receipt of palliative care earlier in the disease course...now to elect hospice under Medicare you must unelect 'curative' care.

As an aside, when I was an undergrad at UNC, I saw Marion give a talk where she discussed futile care....meaning care that was judged to be providing no benefit (and maybe causing harm) and was very expensive and that we needed to address that issue. For this 20 year old, this notion was a stunning revelation...isn't more always better.....and I remember thinking 'what is that crazy woman talking about?' Later I got to know her and she encouraged me and helped me see this as an important issue. And now we get to do a project together....so profs out there be nice to the undergrads....maybe they will be your colleague on a project some day.