Closing the door on the dying

by Thomas A. Nelson

I worked in the Fairview-University Medical Center hospice unit for two years as a nurses’ aide. In that time I saw only one patient recover and go home. He returns every so often to play the piano and thanks the hospice staff for saving his life after all his doctors said he was dying. Now, Fairview-University administrators are closing the hospice unit. It isn’t cost-effective, they say.

Hospice
It’s a floor like any other in the hospital. Its rooms are numbered from 401-1 to 417-2. There are single rooms for patients who have infectious diseases and are terminal. In the years that I was there we had patients with diseases from AIDS to childhood leukemia. Our youngest patient during my tenure was 19, the oldest almost 100. They had one thing in common: this was where they had come to die. They could have died at home, but taking care of someone that is close to the end requires skilled caregivers in a stable and safe environment. That and money.
There is a hospice benefit written into Medicare/Medicaid, but don’t count on it to do anything but provide an understaffed nursing home with sub-hospital standards for care. The money in the benefit doesn’t meet the requirements of the care cost. That is why the hospice unit at Fairview is being closed down. According to the powers that be, the floor that helped people die with dignity and without pain cost the hospital millions more than it made from the Medicare benefit.
Of the patients I had when I ended my stay with the hospice unit, one is left. He doesn’t know where he’s going to go once the floor closes. I don’t either, but if I did I probably wouldn’t tell him. I once asked him how he managed to stay upbeat when he had cancer and was in the hospital. He told me that he had lived a long life filled with good things, and that he just thought about all the good things that had gone in his life before he got sick. If he outlives the hospice floor he will have one more good thing in his memory that he can think about when he is placed in a nursing home.
I worked in a nursing home for about a year. The patient to staff ratio was about one nurse to 24 patients and one nursing assistant to 12. In the hospital, aides have about half that number and nurses one-third. Patients feel they have a relationship with their caregivers. This relationship depends on a low patient to staff ratio, and it’s a relationship that I believe is most important to have in hospice situations. It keeps you from dying alone.
That luxury will not exist in a standard nursing home setting with nurses nearly being reduced to the role of medication distributors, and nursing assistants having to squeeze 10 hours of personal cares into eight-hour workdays.
The families of hospice patients are encouraged to stay on the floor. We have an extra room for them, a suite where they can stay while their loved ones go through the final process of dying. The staff refuses to limit visiting hours, and any and all questions are answered to the best of our ability. If a family member has a concern, ranging from pain control to procuring a radio for the room, we see that it’s addressed promptly and to their satisfaction. We give grief therapy, advice, and even hugs or shoulders to cry on. A few people seemed unhappy with us, but in truth they were unhappy about the fact that they were losing someone. We bear the brunt of that frustration as part of the job that we have chosen to perform. I remember many people sending cards or paying visits to our floor to thank us, or congratulate us on a job well done. The piano is played on our floor for a reason.
In addition we have a full complement of social workers and recreational therapists who work with the patients. These people share songs and games and act as social advocates in the dying process—It makes it easier to bear. It prevents you from dying alone. Someone else always has your interest at heart.
These positions will be mostly eliminated once the hospice floor is closed. The dedicated people that I met in 1998 will move on to less-fulfilling jobs. The nurses who possess a special combination of high expertise with a true compassion for the dying will be moved into transitional settings where they will help rehabilitation patients recover and discharge. There is still a pretty penny to be made in putting people back on their feet. It is much simpler than helping someone die, and the protocols for it are more clearly defined.
A few hospice nurses that I worked with have already started looking for positions on other hospice units, but hospice units are a dying breed themselves. My co-worker Heather* came to Fairview specifically to work the hospice. The closing of the floor contributed to her decision to vote for a strike.
I am trying to distill two years of love and learning into this article. I am not equal to the task. I could fill a book and still not be done with it. I won’t be done with my experience as a hospice worker until long after Fairview is. I wouldn’t know where to start. I could talk about sitting in with Mildred* and crying with her when she was alone, something I never would have had time for when I worked in the nursing home. I could talk about John’s* sister, whom I held in the corner of John’s room while she cried. I don’t know how to accurately describe the feelings that a 23-year-old man feels holding a woman old enough to be his mother in one of her greatest moments of loss. I don’t know how to describe the intimacy of helping lung cancer patients light cigarettes in the courtyard, and giving showers to people too weak from lymphoma to wash themselves anymore. I don’t know how to describe the amount of personal growth a person experiences when they do these things. I don’t know how to describe how good someone feels when they know they have done well by someone when they needed it most. It has something to do with being courageous only so you can lend that courage to someone else who needs it. It has something to do with loving so that others can feel loved, can know that they are leaving the world a better place by their passing through it. I have been in love many times on this old floor. And if I said that was all that I felt and learned from hospice care, I would be lying. I mean that.
These things will disappear or be pathetically diminished once the hospice unit transforms to nursing home life. The situation will become one almost completely without compassion, fairness, dignity and service. That situation is much more cost-effective. That situation is rapidly coming to pass.

Asterisks indicate where names have been changed for confidentiality.