Much of what has caught my eye, especially via Twitter, is the work of death-panel bloggers and social-network flame-throwers. I won't repeat their insights here. Thankfully, there also are journalists writing thoughtfully and insightfully about care of human beings as they near death, and about those with the ever-more-complicated job of delivering that care.
One of the best is Lisa Krieger of the San Jose Mercury News, who has written extensively about the quandary created by the ability to keep patients alive but not cure or effectively treat what is killing them. Her ongoing series is titled "The Cost of Dying."
Most recently, Krieger wrote this recently of feeding tubes: “Decades after the tube achieved widespread use for people with irreversible dementia, some families are beginning to say no to them, as emerging research shows that artificial feeding prolongs, complicates and isolates dying.”
Krieger writes both from personal experience and as a first-rate journalist. The recent piece and earlier ones are well worth discovering.
Another newspaper, the Courier Press of Kentucky, quoted Dr. Ira Byock as saying: "We are not doing end-of-life care as much as brink-of-death care. This has to change."
Byock, Director of Palliative Medicine at Dartmouth-Hitchcock Medical Center in New Hampshire, was in Kentucky speaking about hospice care.
"The problem with hospice care in America is that you have to be dying to get it," he said. "In fact, let's be honest, it's not enough in America to be dying to get hospice care, not under Medicare. You also have to agree you are dying — something that many of my patients are not ready to do."
Short-sighted Congressional budget decisions in the 1980s, Byock said, made hospice care mutually exclusive from Medicare Part A and B. Though it made sense at the time, he said, "we now know it was wrong."
When patients must choose between hospice and treatment for their disease, "They stop. They wait. And they come to hospice very late."
(Note: In the run-up to the close defeat of Massachusetts Question 2: Prescribing Medication to End Life, Byock wrote one of the more powerful medical arguments in opposition. And early this year, he had this memorable and illuminating exchange with then-presidential candidate Newt Gingrich.
The advance-directive movement is growing in Canada. A program rolling out now in New Brunswick continues the eastward migration of programs from British Columbia and Alberta.
The National Post reported that Moncton's Horizon Health Network, New Brunswick’s largest health authority, is encouraging Canadians to make their care wishes clear before they lose the ability. More specifically, Horizon will drop its policy of do or do not resuscitate and instead provide patients four options — "pull out all the stops to save me; don’t revive me but give me intensive care unit care; don’t bring me back to life but keep offering relevant treatment; or just keep me comfortable until I die."
Patients will discuss the options with a member of the care team and a physician will sign the order, according to Dr. Pam Mansfield, the clinical director of palliative care at the health authority.
A cautionary note was sounded by Margaret Somerville, the founding director of the Centre for Medicine, Ethics and Law at McGill University.
“I’m sure they’ve got good intentions in doing this, I’m sure they’re wanting to be guided by the patient’s wishes and I guess best interests,” Somerville said. “But I think we’ve got to be very careful to not reduce a very complex relationship that involves critical decision making to something that appears like a simple formula. I don’t think that’s right and I don’t think that’s going to work.”
For Mansfield, though, this new policy encourages conversation and getting at the patient's wishes and best interests.
Louise Hanvey is project manager for the national Speak Up campaign run by the Canadian Hospice Palliative Care Association.
“The literature tells us clearly that if people do advance care planning, they have a better quality of life at the end of their life, they’re more likely to have their wishes respected, their families have less stress, anxiety, depression,” Hanvey said. “And there have been a couple of studies that show it costs the healthcare system less money because people don’t get procedures, interventions that they didn’t want in the first place and that, in fact, might have been futile in the first place.”