I found the first explication of what I was trying to trying to do for most of my life. It is in a memorandum written in 1978 to Elsie Griffith, the executive director of the Dallas Visiting Nurse Association. At the time, I was working on planning and implementing the VNA Terminal Care Program, which was foundational for the first hospice in Texas. In hospice we focused intensively on managing physical symptoms at the end-of-life, such as pain, nausea, shortness of breath, etc.; and on supporting families. The subject here is the spiritual and ethical structuring of this work. It’s hard to believe I sent this and that Elsie accepted it and believed in the vision. Here it is, exactly as I sent it:
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June 9, 1978
To: Elsie Griffith
From: Charles Kemp
I feel a strong need to express something that is difficult to express— namely, the spirit which I think should be part of our terminal care program.
I hope we all recognize that the way we die in America is generally poor. To illustrate this let me tell you about a situation I am presently experiencing: Several weeks ago someone called me to say that a friend of theirs was dying of cancer of the breast metastatic to brain, ribs, spine, abdomen, etc. and would I see what I could do to help. The person in question is a 41-year-old woman (Jan) whose 2 teenage daughters live with her husband in another residence. Jan’s mother has been taking care of her for about 7 months and is physically and emotionally exhausted. If relief is not forth coming, Jan will have to go to a nursing home. We have been helping with home health aides and nursing but it’s not enough.
I went to see Jan on a Friday night before I left for a week in California. I found her to be in excruciating pain and to have paraplegia. There were only a few hours left before I had to leave town and although I tried, I could not find any relief. When I returned from California I called and discovered that Jan was on the way to a nursing home.
After visiting her once and seeing what the situation was I committed myself to stay with her 2 nights a week. I can’t say exactly why — I’ve never done this before — sometimes something happens when people meet or when situations present — maybe I ‘m seeing me or my wife — or maybe I have the need to stay grounded (as much as is possible) in the reality of dying as I plan for helping people die as humans.
Staying in a nursing home at night is a strange, sad, and sometimes bizarre experience:
Me: “She needs something for pain”
Nurse: “I don’t work that hall.”
Me: “Where is the other nurse?”
Nurse: “He’s gone.”
Me: “When will he be back?”
Nurse: “15 minutes.”
Me: “She’s really in a lot of pain.”
Nurse: “I don’t work that hall.”
Me: “Are you saying you won’t do anything?”
Nurse: “I don’t work that hall.”
At midnight an aide walks in, turns the light on and off and starts to walk out. I ask her what she’s doing. “Checking the light.” — and out she goes.
Ice pitchers are filled at 5:30 A.M.
And much more. It’s a kind of dumb, passive brutality.
I know you’ve heard and seen a thousand variations on thig sorry tale. You know about the terrible loneliness and dehumanization of dying. You have in your possession some scientifically-oriented things I’ve written about this. So probably I’m trying to touch you with something that is touching me very deeply: The spirit of the terminal care program:
To be touched and to be able to touch people who are lonely and afraid. To be not afraid to feel. To work from the mind and the heart. To experience the personal loneliness and fear that lies within (us all). To care enough not to need to be the hero. To work through the family. This is difficult for me to express. I’ m not looking just for increased services; I’m looking for something that will touch people at every level.
When these things are happening, the people (nurses, aides, social workers, doctors, volunteers, etc.) who are experiencing them need to have to have an incredibly strong support system.
I tell you, I am committed to planning and operationalizing a program which will give what is needed. And I’m firm in my knowledge and belief that this spirit I have so inadequately expressed above is vital to meeting the needs of people who are dying.
Thank you,
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Jan went home a few days later and she died peacefully at home a few months later. She was a brave woman.
The night in the “dumb, passive brutality” of that nursing home was inspirational to me. I’m not saying that over time my colleagues and I ended the ugliness, but at least for people with end-stage cancer, ALS, and other afflictions there are now much kinder, more supportive, and more clinically effective options all across America – and that’s exactly what we were aiming for.