Questioning Hospital-Based Palliative Care

Posted by on May 17, 2013 in Cancer Care, Guest Posts | 4 comments

Questioning Hospital-Based Palliative Care

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.

 

MY MISSION

-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.

MY VISION

-To ensure that patient protection is the foundation upon which all hospices carry out their own missions.

4 Comments

  1. Thank you, Drs. Salwitz and Reed, for another great blog post.

    I don’t know how others feel about “palliative care” for the patient whose death is imminent (expected within days). When my mother was dying in 1993, we didn’t have the choice of hospice and I’ve often wondered what would her last days have been like if we had. I know she would have preferred to die at home, a place she had lived for over 50 years and loved.

    On the other hand, we did have a small miracle in the form of a family physician who had been her (and our entire family’s) doctor for decades. When her congestive heart failure and its complications caused the last stroke which put her in the last hospital visit, she then suffered that last, fatal, heart attack. She was 79, widowed for six years, and as a deeply believing Christian, not in the least afraid of death. She wanted only to die with love around her and nothing that would prolong her final breath. She made this quite clear to both her doctor and to me, her only child.

    Dr. S was keeping her as comfortable as he could, which wasn’t easy, given the situation. I arrived at the hospital at one point to find her aggitated and struggling. Checking to see when the last medications had been given, I asked her nurse why she hadn’t had them. Her reply was, “I’m not going to give that to her yet because ‘I don’t want to play God'”. This RN was afraid the meds would kill her. I called Dr. S. at his home (there’s nothing so good as having that sort of access to your doctor). He immediately came to the hospital, looked at the nurse and told her, “If you don’t want to follow my orders for Mrs. P, then go home. I’ll get somebody in here who will. I want her kept comfortable.”

    There are some, you see, who think just like that RN – that they’re playing Dr. K, the death giver because it’s sometimes/often a fine line; but in this particular case, Dr. S was doing what he should and what his patient wanted. My greatest fear of hospice is that I’d run into a nurse like that one and not be able to call my doctor in to fix the situation.

    I’m not sure that any revisions to any “patient’s bill of rights” will ensure that every patient in a palliative care situation gets as good care as Dr. S. gave my mother. Maybe in a perfect world, but at least it’s a start. End note: my mother died quietly with me standing by her bed holding her hand … a few days after that incident with the nurse in April of 1993. I miss her. I also miss Dr. S., who has since retired from his medical labors.

    Keep up the wonderful blog. As a cancer patient with incurable, but indolent disease, I applaud your common sense, your sensitivity, and your sense of humor.

    Warm regards,
    Penny H.

    • Thank you very much for your very personal and insightful comment. It is critical for us all to realize that while hospice and palliative care are extremely important ideas and goals, it will require continued work and vigilance to achieve those goals.

      jcs

  2. I, too, was my mother’s care giver thru her 10 yr bout of esophageal cancer. However, she is the one in a million who had great results throughout her ordeal. She had a wonderful, caring doc who helped me keep her comfortable at HOME which was her major wish. He did not want her in hopt, so he would take my calls all the time and made at least one house call. Without his support given to me, I would not have had the strength to maintain her at home. So, there are still some great and caring docs practicing and we had ours!
    mimi

    • Great and reassuring to hear.
      Thanks,
      jcs

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