Guest Blog, by Douglas Someya Reed
Yesterday, I attended a presentation “brief” in Sacramento, California titled Ending “Unwarranted” Variation in End-of-life Care in California. For the subject matter, the program was well attended at about 75 or so. The intent was to educate legislative staff but was open to anyone. I brought a friend. Since it was recently determined that “70 is the new 30” I’m sure he won’t mind me telling you that he’s “pushing 80” which makes him about 33 in “new math” years.
I had spent the previous day reading the preliminary literature and crafting the “perfect” question knowing full well that you never get to ask the question you plan for…it always changes. The night before, I stuffed my messenger bag with anything I thought I might need to help promote “quality” in hospice care and educate the attendees. And, you never know who you might meet.
There were four panelists: CEO of a healthcare foundation, director of health policy research from a well known university, director of palliative care from another well known university and a science & medicine reporter from a major news group. All were interesting and well-spoken but their presentations were more informative of the problem than recommending of solutions. One presenter’s segment was cleverly titled, “You Rarely Get What You Don’t Know You Want” but, sadly, is also true.
They even spoke of the mechanization of medical care, as has Dr. Salwitz, with tele-medicine, bracelet and ankle cuff monitoring of vitals, etc. I agreed with much of what they said and feel that hospital-based palliative care is an excellent idea. It’s long overdue as a norm in all hospitals. But a couple of questions started rattling around in my head. I wrote them down so I wouldn’t forget to ask them.
All of the presenters, in some fashion, used hospice as part of the way to put an end to variation in end-of-life care. The first thing that came to mind was:
If hospital-based palliative care becomes the norm (and is done well), what effect will it have on the hospice industry?
I asked this but didn’t get an answer because I launched right into my second question:
Why would each of you recommend something that you know (or should know) in California is unregulated, has no enforcement, no fines, no patient support or protections other than private civil action, has an audit frequency of once in over a decade, continuously denigrates hospitals and physicians on their lack of compassionate care and pursuit of money, routinely cuts the attending physician out of the patient’s care team and pursues CMS to make it legally permanent, has no legally enforceable Patients’ Bill of Rights…
I know I went on too long…speakers should use no more than three supporting concepts…but as I held the microphone I was egged on by the all too common “I didn’t know that” gasps I heard behind me. A quick glance to my left was met with the sight of multiple mouths hanging open. Another common occurrence. I hadn’t even reached the part about changing the HAA’s (Hospice Association of America) original Patients’ Bill of Rights by adding patient forced discharge for any refusals that (the hospice feels) “compromises our commitment to quality care.” They even include your chosen attending physician in this by prefacing this clause with various forms of “either the hospice or your physician.” Why would your own doctor suggest you be forcibly discharged from hospice for your lawful refusal to do something that the hospice merely thought compromised their commitment (their impression) of quality care?
A panelist did take on this question. His answer…he recommends hospice because he’s “heard more good than bad about them.” A hospice is a hospice is a hospice? Not so…not at all. Time was up before I could ask the obvious, what percentage of “bad” is acceptable and would “who” it is make a difference?
So on the way home, I asked my “new math” 33 year old friend what he thought of all of this. You know those “kids.” They catch on so quickly. He asked me, “You know why he said that, don’t you?” I honestly answered that I didn’t. My friend said, “If hospice didn’t do it then he’d have to.”
Oh. I didn’t think of that.
-To assure the public that hospice excellence is only achieved by ensuring patient protection where no patient or family member suffers from what any hospice employee did, but shouldn’t or should have, but wouldn’t.
-To educate patients and their families that no amount of “business needs” (statistics or studies, market share or profits and non-profit or for-profit tax status) will help them choose a hospice with the “human needs” that is right for them.
-To ensure that patient protection is the foundation upon which all hospices carry out their own missions.