Hospice--patient centered care

My trip to Omaha never would have been possible without the support and cooperation of my hospice program, Visiting Nurse and Community Health of Arlington, Massachusetts, and the Omaha hospice program, Visiting Nurse Association of Omaha who provided seamless coverage and made me feel safe and secure. About a week before the trip, I notified Louise, who has been my regular nurse since Lauren has been out on sick leave, and the administrator of the Arlington hospice located the Omaha program and sent them my records. Before we left, I also called Omaha to give them information about our flights and where we would be staying, and when we arrived at the hotel I called to let them know the trip had gone well. The nurse on call, Scott, came to the hotel, although it was quite late in the evening, just to check me out (he also brought some distilled water which we needed for our "elephants"). He was so cheerful and friendly and encouraged us to call at any time if there were any problems.

When we needed to call, the next day, because I was feeling so awful, sick to my stomach and probably feverish, the nurse on call, Amy, came and stayed for several hours, first administering some medicine that she had brought with her at my request (a compazine suppository), and then, when that brought only partial relief, she called the doctor and went out to get some additional medicines. All together I think she was with us for several hours, and she was so supportive and positive while I was weepy and miserable.

The hospice movement attracts certain kinds of people, who find it rewarding to work with dying patients, although I suppose many people would not find it appealing work. But in all my experiences with hospice, both when my dad was a hospice patient, and now my own, I have found a group of people who are upbeat without any kind of false cheerfulness, but who instead can help to find a positive aspect in any situation.

When I first came into hospice, I was shown a diagram of patient-centered care, with the patient represented by a big circle in the middle, surrounded by smaller circles standing for family, nurses, social workers, etc., all of whom are there to help the patient achieve his or her goals. So when I said I wanted to go to Omaha, many people at both agencies had to do a lot of things to make it possible, without any sense that they were going out of their way or doing something "extra" or unnecessary--if it was something I wanted to do, hospice was there to make sure it happened.

So when I learned recently that Congress has proposed cuts to Medicare hospice funding, I found it shocking. According to the Alliance for Care at the End of Life, hospice programs are facing an 11.8% rate cut due to regulatory changes and health care reform, which could lead to programs not being open to new patients, or even having to close. Cutting hospice is certainly not cutting the "waste, fraud, and abuse" that we have been hearing so much about in the health care reform debate. In 2007, an independent study found that hospice saved Medicare $2 billion, so it makes no sense to cut these programs. (See www.nhpco.org/advocacy.)

This is, of course, the same institutional bias that we have always complained about in the mental health and disability advocacy communities. Because of the big taboo against talking about dying, people end up dying expensive deaths in hospitals in which quality of life is not a major concern, and which Medicare and private insurance pay for without question, instead of dying at home (as most people say they want to do), with compassionate hospice care that puts their quality of life at the forefront.

Somehow, we need to build a coalition around this issue--cutting hospice is wrong morally, and wrong fiscally. There certainly is billions of dollars of waste, fraud, and abuse in the health care system, where some people are getting very rich, but it's certainly not in hospice programs, which run on a shoestring.