So what exactly does a hospice medical director do? I know you’ve been wondering since you read my intro post. Or perhaps you’ve been wondering what I mean by “hospice”. If you read Atul Gawande’s piece in the current issue of The New Yorker, you read about the way hospice works for some individuals and in some systems.
“Hospice” is a philosophy of care based on the work of Dame Cecily Saunders who believed that care at the end of life should help reduce what she called “total pain”, by which she meant physical, spiritual and emotional suffering. She also did pioneering research in pain management and developed the approach that is now the standard for treating chronic pain at any point in illness. Dame Cecily founded St Christopher’s Hospice in London, which is a residential hospice facility. In the US, where hospice became a Medicare benefit in 1982, most hospice patients are cared for at home.
I work for a hospice agency that is part of a home care agency. We also have a small inpatient hospice facility, but over 90% of our patients are cared for at home (or in the nursing home or assisted living facility where they reside). Those at home are cared for by their families, in most cases, sometimes helped by hired caregivers. There is very little insurance coverage for that kind of care – we provide nurse’s visits and medication and equipment and assistance from home health aides, but everything else is up to the family. It’s a huge, gaping hole in the center of the American health care system.
So what do I do? Well, today was fairly typical. I dealt with scheduling issues for our fellowship program, prepared to teach tomorrow morning, met with the nurses and social worker for our daily status report, filled out and signed a pile of paperwork, and arranged coverage for my time off in September. And in between all that, I visited with the patients in our inpatient unit, and their families when they were present. I performed an examination and, more importantly, talked to the patients or their families about how things were going, and answered their questions. Why aren’t we giving IV fluids? Isn’t it cruel to let him lie there without eating anything? Is the morphine going to kill her? How much longer will it be? Should I call my sister, who lives out of state, and tell her it’s time?
We aren’t giving IV fluids because at this point the body can’t incorporate the fluid and giving it will cause more swelling and congestion, and he’ll have a harder time breathing.
No, I don’t think we’re being cruel. Your father isn’t awake enough to swallow safely, and we know from patients who have been awake at this stage that they aren’t hungry, and trying to eat makes them feel worse. As difficult as it is, the most loving thing we can do right now is not feed him.
She’s much more comfortable with the morphine, don’t you think? We know from our experience and what it says in the literature that patients treated with morphine don’t die sooner; in fact, they may live slightly longer. In any case, we want what time she has to be as comfortable as possible.
I never can tell exactly how long it will be. I think it will be a day or two, but I’ve been wrong in both directions. If it’s important to your sister to get her before she dies, she should come now. That would be a hard phone call to make. Can we help you with that?
One of the blessings of my job is that I don’t have to do this alone. Our social worker and chaplain and our infinitely skilled and compassionate nurses have those conversations, too. This is the core of what we do, these conversations, and I am grateful to have the time to spend my days in communion with my patients and their families.