Hospice care: comfort, support, peace. And part of the Medicare benefit.
For years I have preached – to anyone listening, and not many people listen to my preaching – that hospice care is the best and most under-utilized piece of the entire American healthcare system. And I have urged every terminally ill person ever encountered to go on hospice sooner rather than later. The benefits include not just access to nurses and other medical professionals but equipment like hospital beds that make life (and death) easier on everyone.
Hospice got very personal to me when my husband was dying of congestive heart failure. We missed my #1 lecture about invoking the service early because it took him only a few days to go from living fairly comfortably with the disease – as he did for many years – to end stage and a quick death. We should all sign up for this. Still, the hospice bed was a godsend, as was the liquid morphine that I was dispensing as if it were root beer float.
Hospice and I go way back. In the early 1980s, having always volunteered with arts or educational organizations, I wanted to try something new. Hanging out with really sick people? Being around someone who’s dying? That seemed utterly impossible to me. So I decided to give it a try, and signed up to train as a hospice volunteer. It was, of course, the most rewarding thing I’d ever done. Since then I have worked with (and written about) AIDS support groups (in the 1990s) and assorted end-of-life nonprofits up to and including today serving as a volunteer and board member for End of Life Choices CA.
Two things I have learned and absolutely swear: hospice care is the best, and IT SHOULD NOT BE FOR PROFIT. If you’re a for-profit business in the hospice business where is your profit coming from? Duh. People. Sick and dying people, vulnerable people, the people least likely to stand up for themselves against your money-making.
OK, there are for-profit hospices that are just fine. I put that in quickly, since I have many, many friends who work with for-profits and they will have my head if they read this and think I’m implying every for-profit hospice is intrinsically evil. Not so. But the fact remains: a for-profit business is about profit, and the hospice business is about sick and dying people.
Most recently the for-profit hospice business has been indicted by ProPublica reporter Ava Kofmanin a carefully researched article that appears on the ProPublica site and in the December 5 New Yorker. Endgame: How the visionary hospice movement became a for-profit hustle details one major lawsuit over one egregious case but covers the broader topic as it relates to these abuses. Its final line quotes two men discussing the opening of a potential new hospice. Says one to the other: “We can turn a profit and split it.” And that line says it all.
The National Hospice and Palliative Care Organization (NHPCO) and the National Association for Home Care & Hospice (NAHC) were quick to respond to Kofman’s article, saying it focuses on a few bad actors (which is true) and lamenting that it might discourage people from using hospice care (which would be unfortunate but hopefully is not true.)
“The hospice benefit is popular, well-regarded, and saves taxpayer dollars compared to keeping terminally ill patients in hospitals or other institutional centers of care,” the responding article reads. “NAHC, NHPCO, and our members look forward to working with federal and state policymakers to implement solutions to address the isolated problems highlighted by the article without jeopardizing access to the Medicare hospice benefit.”
One can hope.
But when I need hospice care – hopefully not any time soon, but hey, dying happens to all of us – I’m still calling a nonprofit organization.