Tuesday, August 9, 2005
This Sunday's NY Times magazine's cover story is about the changing face of hospice and palliative care in the US & asks, among other things, if hospice is losing its soul. It begins along these lines...
It's all part of the new trend in hospice toward ''open access,'' meaning that terminally ill patients can continue chemotherapy and other treatments and still get hospice benefits through Medicacre. The idea began in the 1980's, when AIDS patients started enrolling in hospices and weren't quite ready to give up all medical options. Today hospice workers are also aligning with doctors in a field known as palliative medicine -- an approach that emphasizes pain relief, symptom control and spiritual and emotional care for the dying and their families. With hospice becoming so inclusive, and with palliative care on its way to becoming a new medical subspecialty with its own licensing exam, the natural, machine-free deaths we say we want are starting to look a lot like the medicalized deaths they were meant to replace.
The trend reflects society's deep ambivalence about dying. During the long and public agony over the death of Terri Schiavo, debate centered on the right to make end-of-life decisions. But underlying the political posturing was a shared assumption that was barely acknowledged: the belief that dying is something over which we have some control. This death-denying culture has led to a system of care for the terminally ill that allows us to indulge the fantasy that dying is somehow optional.
After reading this part I thought the piece was going to be an ignorant diatribe about how hospice should be little more than nurses putting cold towels on dying patients' foreheads and dripping morphine under their tongue. However the article is long, balanced, and quite a detailed look into the contradictions involved in caring for the dying, especially when the dying aren't quite ready to die. There's an undercurrent of surpise in the author's rhetoric that the success of the hospice/palliative movement in the US hasn't dramatically made Americans more at peace with death and dying but, as she says midway through the piece, "dying is awfully hard to coreograph." This is my new motto.