Let's Rethink Hospice Admissions
The Rights of Patients Need to Be Considered
There is a need for hospice. Some say hospice has been helpful, even a godsend. But my experience has been bewildering.
It happens that my friend and long-time neighbor was an elderly lady with Alzheimer's. She lived in a beautifully decorated apartment and loved San Francisco. She retired from a productive service career, was self-sufficient, and used her savings to pay for all her care. She had no other health problems. Her half-brother, who controlled her trust and will, lived in southern California. He administered her funds from his home.
She fell out of bed, and when a neighbor or caregiver found her on the floor, an ambulance rushed to the emergency room, where the E.R. doctors gave her an array of medical tests. Doctors recommended against hospice despite pressure to do so. However, when she returned home from fall number three, she was transferred from a curative program to a non-curative hospice program. She was confined in a restraining hospital bed, completely immobilized. Before this fall, she had been mobile, took her meals sitting up, and enjoyed Jeopardy, and the New York Times crossword puzzle. After a period of hospice immobilization and a change in her meds from curative to feel-good, she remained at her home. She was transferred to a hospice facility without being consulted and expressed her distaste unequivocally. The decision-makers included her half-brother and private caregivers.
A group of former colleagues and friends formed to convince her half-brother to rescind her hospice disposition and return her home to live or die among her treasured surroundings, hopefully with proper meds, made mobile, and with massage and physical therapy.”
At the hospice facility, she remained immobilized and medicated with hydromorphone, the hospice "feel good" drug. No curative medications or complementary physical therapy were dispensed or administered. When she was lucid enough to converse, the absent half-brother overrode her wishes, and members of the medical profession acquiesced. Her post-hospice physical condition quickly deteriorated, and after a valiant fight for life, she passed in a small, bleak hospice room. The committing family never visited. I was there earlier in the day and requested staff to hydrate her. The post-hospice deterioration was significant and accelerated at an increasing rate. Would that have occurred had she remained mobile and at home on curative meds while under proper home care? We will never know.
A group of former colleagues and friends formed to convince her half-brother to rescind her hospice disposition and return her home to live or die among her treasured surroundings, hopefully with proper meds, made mobile, and with massage and physical therapy. He said she was "well taken care of" in hospice. How did he or any of her distant family know? They did not visit her during the hospice episode. We approached Adult Protective Services (APS) to have her taken out of hospice, returned home, properly medicated, and remobilized. APS sent someone to the hospice to see if it was doing its job. It sure was. Not what we asked APS. We asked APS to question why she was even in hospice, not to check on hospice efficiency.
APS was just the tip of the regulatory rejections and lack of interest by decision-altering bureaucracies that could have helped in this clear case of patient misplacement. They denied her movement—her right as a fellow human being. Worst of all, no one asked her if this was what she wanted. All the bureaucrats we approached refused to intervene. It seemed like a prison to her.
I have not used her name nor identified the hospice involved to evade possible legal repercussions. It's difficult to imagine anyone would doubt that it happened, and it may be happening every day.
I believe hers was a premature, legalized death sentence. Some will say my experience was anecdotal; for me, the facts remain. How can we allow bureaucratically approved euthanasia? Her death was not foreseeable when her family sought hospice intervention. It was assured. If hospice was an error, it was a non-recoverable error.
We need actual checks and balances. A proper regulatory system. Not the San Francisco façade that I have witnessed. As I have often written – the illusion of oversight is worse than having no oversight.
Euthanasia is illegal in all fifty states, while assisted suicide is legal in 10 U.S. jurisdictions, including California. Canada has euthanasia laws that accounted for over 10,000 deaths in 2021—approximately 3.3 percent of all Canadian deaths. Canada is currently amending a pivotal (Parliamentary Bill C7) legal constraint on euthanasia. It will remove the stipulation that euthanasia may only be administered to someone "whose death is foreseeable." More, not fewer constraints on terminating life are required. Canada and the U.S. A Canadian blogger Lauren Southern wrote about this shift in Canadian policy that might allow euthanizing the mentally ill. "…people in Canada even those with transient mental illness episodes could easily be euthanized without proper oversight. A person enduring a temporary episode of depression would qualify to be dispatched under the proposed Canadian guidelines." She questions whether this new Canadian-assisted death program can be properly monitored and regulated and casts serious doubts about current monitoring. Leaving the morality of such a bureaucratic endeavor unanswered.
Ava Kofman, writing in Propublica (11/28/2022) "Endgame: How the Visionary Hospice Movement Became a For-Profit Hustle." Though it is a long and well-chronicled article, it requires a deep read. The profit motive (corporate or personal) appears to dictate the intended compassion and care originally intended for this process. The bottom line, business interests and the true purpose of an assisted death are not properly separated. The dollar motive must take a rear seat when it comes to life and death.
We must have proper and responsive oversight. The misuse of hospice services must be avoided. That would demand reprioritizing public resources and establishing fail-safe review and oversight processes.
Could corporate or economic motivations take over in a near unregulated environment in San Francisco? This is a deep blue city that prides itself on liberalism and a great affection for the constitutional guarantees of life, liberty, and the pursuit of happiness. From my perspective, San Francisco has a poor record.
Brian Browne was coauthor of 2002 Prop P and former member of the Revenue Bond Oversight Committee it created. Feedback: firstname.lastname@example.org