Hospice in Crisis
Both my parents left this earth under the beneficent care of hospice professionals who kept them comfortable and at peace. My dad died in a Veterans Affairs hospice unit in 1984, when the movement in the USA was relatively new. Mom passed in 2016, in my wife’s and my home, receiving care there. I was very satisfied and grateful in both instances.
In recent years I have been hearing disturbing stories of hospice failings — things such as too much pain control to speed up the dying or inadequate services. Now, one of the nation’s top palliative-care doctors is sounding the alarm. From “Hospice care needs saving,” by Ira Byock:
As a palliative care physician who has contributed to hospice care and kept my finger on its pulse for more than four decades, I have been dismayed to witness the increasing frequency and severity in lapses in this type of care. I applaud the media for calling attention to deficiencies that can harm people during the most vulnerable times in their lives. I am hopeful that the article will spark a long-overdue internal reckoning by the field — my field — and the industry we gave rise to.
If one of the specialty’s great boosters says that hospice is in crisis, it is a matter of urgent concern for us all.
Byock points to data that evidence worse care provided by “for profit” agencies. I hope that’s not true. Providing quality care would bring referrals and more patients. But, then again, nonprofit providers may be more likely to be in it for the service. My mom’s hospice was not-for-profit, and the professionals were unconditional in their dedication to her care and comfort.
I agree with this sentiment wholeheartedly:
I and others who truly believe in the value of hospice can’t give up. At its best, this kind of care is nearly magical in its ability to restore seriously ill people to a sense of living in the midst of dying. But for hospice to have any chance of surviving with its therapeutic potential intact, leaders in the field must confront their own denial. In this situation, we are either the solution to the problem or the problem itself.
Byock quotes the great medical humanitarian Dame Cicely Saunders, who originated the modern hospice movement:
The founder of hospice, Dame Cicely Saunders, once observed, “How people die remains in the memory of those who live on.” Her statement inspired a generation of hospice workers. It now reads as a warning about the hazards of commodified hospice care.
Stories are indeed the great driver of attitudes about end-of-life care. I can’t think of a better way to promote euthanasia than for hospice professionals to allow the field to collapse.
The federal government has a big role to play here. Hospice is often paid for by Medicare. Congressional hearings are in order, which could be a rare nexus of bipartisan focus. The country has a vital stake in determining the extent of the problems and finding solutions.
I want to make it clear that I still hear stories of very good hospice experiences, too. Hospice has so much to offer. But I do think that patients and families have to take the time to investigate their local hospices to discern the agencies’ values and approaches to care.
This much is clear: Hospice either gets fixed, or society will be pushed into the arms of the euthanasia movement, with all of its attendant evils (as currently unfolding in Canada). Because people are not going to put up with their loved ones dying in agony.