Several recent articles and blog postings have discussed the emotional barriers to hospice access for people with terminal illnesses, including a just-released Archives of Internal Medicine study (Huskamp et al, http://tinyurl.com/qnj242) about conversations with physicians regarding end-of-life care prospects and options. This kind of research can help us understand some of the nuances of such encounters at the end of life, but I wonder if they take us closer to solving hospice's Flying Dutchman status in our society.
The Archives study examined charts of 1500 patients with metastatic lung cancer -- ideal candidates for hospice -- 4 to 7 months after diagnosis to see if there was any discussion of hospice care. Only half of the time was there any. The New Old Age Blog by Paula Span in the New York Times last week contrasted the benefits of hospice care with the common tendency to wait too long for enrollment -- and thus miss out on some of those benefits.
Another Times blogger, physician and author Pauline Chen recently wrote about how hard it was to have end-of-life conversations with her mother-in-law, but how important it was in the end. Chen also cited a JAMA article (Wright AA, et al, 2008 Oct. 8, 300: 1665-73) discussing how these kinds of discussions with terminally ill patients affect their quality of life. Patients who had discussions about end-of-life with their physicians were found to have better quality of life -- and so were their surviving caregivers. Which is an almost perfect summation of the philosophy behind the hospice movement.
There is a tendency sometimes to want to blame physicians, or health plans, or Medicare, or the denial of patients and families for the delays and barriers and misunderstandings, and yet I think the problem runs much deeper -- to the heart of our culture. Samuel Johnson famously commented, "When a man knows he is to be hanged in a fortnight, it concentrates his mind wonderfully." Once upon a time, doctors told patients when it was time to get their affairs in order -- because that was considered important for a host of practical, social and spiritual reasons. Ira Byock has written powerfully about the end of life as a phase of life with its own developmental tasks and opportunities for personal growth.
And yet for many people, those concepts seem alien. It is easier to avoid, evade, change the subject or grasp for some kind of familiar conceptual solid footing when it comes to that hanging in a fortnight. We have so few widespread cultural models of dying well. We can't imagine benefits to knowing, planning, straight talk, frank decision-making, meaningful farewells -- even though some recent research suggests that terminally ill cancer patients may even live a little longer on hospice and off chemotherapy.
Hospice veterans talk about the dance of denial between the physician and patient and family, warily circling each other, waiting for the other's cue that it's now, at last, okay to bring up terminal illness and consider a hospice referral, and as a result perhaps never getting into step. I wrote a while back about the phenomenon of some patients and families just knowing when the time was right for hospice -- even though they many not have fully understood what hospice care is or what it offers. For my father, the right time for hospice was 36 hours before he died, and he was very familiar with the hospice concept -- he had my book on the subject.
We could ask what if people knew more about hospice, how it works, what it offers, and the benefits of earlier referral. Could a well-planned social marketing campaign be devised to overcome the misconceptions? Or would people still find ways to avoid the correct information? Is it hospice's job, ultimately, to take patients where they're at and when they come, willingly or kicking and screaming, early, late or not at all -- if that's the path their choices and unwillingness to choose take them?
This is a compelling, eloquent, and thoughtful post. The Samuel Johnson quote and Flying Dutchman analogy are spot on. Just today, one of my mentors - Mike Rabow - said that cancer forces people to confront issues they have spent their whole life trying to evade. I think the same can be said of progressive frailty.
Andy Billings once said that he loves the psychosocial aspects of palliative care, precisely because they are infinitely complex. When you layer on cultural differences (can one put the words "good" and "death" together in Chinese culture), emerging technologies (we can keep someone alive a little longer every day), and other factors such as religiousness, the phantom nature of hospice for many patients -- always just over the horizon -- is easier to understand.
Posted by: Alex Smith | July 21, 2009 at 09:39 PM