Sunday, July 31, 2011

Starting Hospice

Here is how hospice started in Texas in 1978-79.

I was interested in dying and death before I got into nursing – what with all the gunfights, mines, morters, and so on. And the healing path after the war also brought life and death into sharper focus. Dorothy Pettigrew, one of my teachers at Baylor told us about Kubler-Ross’ stages and I sought out more information and the opportunity to work with people at the end of life. John Reed was very helpful in this process and I owe a lot to him.

When I graduated I went to work at the VNA and again sought those opportunities. I decided I needed to get better at communicating with patients, so went to UT Austin to work on a master’s in psychiatric nursing (I had a fellowship and veteran’s bennies). It was an intense year in school and another good year with Leslie.

There were few jobs and little apparent opportunity in those jobs in Austin and so Leslie stayed and I went to Dallas. It was in no way a separation, but it was a commuter marriage. Leslie stayed at Carol Nunley’s and flew in every Friday afternoon and left Sunday afternoon. I had an apartment in an old sixplex on Prescott in Oak Lawn – every weekend, what a great time we had there.

At the end of our time together in Austin I spent a week at a “Transitions Workshop” with Elisabeth Kubler-Ross, Stephen Levine, and about 75 people who more or less fit into one of three categories: some had life-threatening illness, some had lost a loved one, and some were working in terminal care in some way or another. This thing happened at a Catholic retreat center in San Antonio. The sessions went from ~8am until 1 or 2am. On the first morning we were all in a large room, going through us all, with people sharing why they were there. We learned later that this was called bullshit time, because so many people would be saying they were there to learn about dying and death. In our time, however, we went from a person who was dying to someone who was afraid to a man who said he was there because he was always judging other people, and somehow these people freed things so that other people began saying why they were really there: because of our pain. Photos by Debora Hunter

Most of the rest of the time was spent in a process called externalizing, in which people would express pain, anger, grief and say what they had to say to those who had been a part of whatever it was that was happening (God, an abusive parent, self, spouse, the usual line-up). Part of that was that nobody was comforted. People, myself included, expressed the pain, then deeper, and deeper into it, until (often with groaning, sobbing, and so on) the pain really was out, not sanitized for public consumption, but agonized, snot-running, sweaty, and raw. People were realizing they could survive these terrible feelings. Though toward the end there was comforting, and greatest in the comfort was that we were all doing this thing. One thing I shared was how Donohue was killed. It was the first time I said this aloud, though I was running the video in my mind every bleeding day of my life for 10 years. I later told Jeff and I wrote it here:

In Dallas I went to work at the VNA. When I graduated from the master’s program I was thinking I should have a certain level of job, certainly “higher” than staff, but after the Transitions Workshop, I realized all I ever wanted to do was to help others and the best way I could think of to do that was to work with patients (I still believe that). So I went to work as a staff nurse providing care in people’s homes. Within a few months some other people (Ruby Carter, Tim Brown, Johnnie Turner) and I were meeting to talk about what we could do to do a better job caring for people with terminal disease. There were no pagers at the time, so we all carried note cards with all our names and phone numbers and we’d give one to each patient who was dying – the idea being that surely, one of us was bound to be available no matter what time of the day or night the call came.

Not too long after we got this going, the VNA Executive Director, Elsie Griffith called me to her office and told me she wanted me to “work on something for people with terminal illness.” I came out of the field and went to work on program planning and on how to get leadership to buy into what I was planning. Early in the process someone asked me to look in on Jan, a young woman with metastatic breast disease. Incredibly she lived about a mile from my apartment and I began helping her mother, Jean, an amazing woman. I think it was about three months before Jan died. She had an incredible journey, with many long nights at the edge.

Meanwhile, back at the VNA we brought in Al Shapero, one of my professors (design and management) at UT, to help with the planning and bringing the organization’s leadership along. It all came together and was kept real, at least in part through my nightly encounters with Jan’s journey toward death. Somewhere along the way I spent a week at Hospice of Marin, where I learned more about program details and met some of the other people who were making hospice happen in the U.S.

VNA had Dallas divided into three districts and we started the program, (initially the VNA Terminal Care Program – creative, ain’t I – and later called the VNA Home Hospice), in the East District. It was a very lean program, basically a team of nurses, medical director, social worker, chaplain, home health aides, lay volunteers – each team integrated into their district organizational structure. Three months later we started in the West District and three months after that the third district and Dallas was covered.

Each time we started up, we had a training program that lasted about a week if memory serves me. We covered hospice principles, symptom management, communications, spiritual care, etc., and we also had some powerful exercises and meditations. One of the people who helped with training was Herman Cook, who had worked with Kubler-Ross at the University of Chicago and was now (at the time of the training) a chaplain at Parkland, Dallas’ county hospital.

One very nice outcome to the care we were providing was that the percentage of VNA patients with advanced cancer who died at home went from ~32% to >66%. On any given day we were taking care of more patients than any hospice in the U.S. It was working.

In keeping with my outlook on things, I didn’t have an office for quite awhile. Still focused on patients. Then I had an office and a secretary, Virginia, who did wonderful work. I told everyone who worked in hospice, including administrative, that we would all always be working with at least one patient. Virginia worked with this woman, whose life was truly tragic.

At this time there were a few hospice programs on the east and the west coasts, and of course in the U.K. In Texas, there were a few people talking about it, but we were the first people in Texas to actually provide hospice care.

There was a spirit alive in those days – one which is still alive in many hospices! It was a spirit of hope for our patients, of faith in our potential and the potential of our patients, of pushing the limits of symptom management, of dedication to this better way of living in the context of dying. Those were epic days of legendary efforts in mercy. People like Cathy Little, Laura Neal-McCollum, Major Thomas, and Jimmy Boyd were spending day after day in the presence of suffering, fear, despair, and pain. By their faithfulness, skill, and love they showed that hope was real and healing possible.

How can there be healing in dying? When my teacher, Stephen Levine said,

We’re born to be healed

He wasn’t talking about healing the flesh. It’s the healing of the spirit, the person, the family, the past, the present, the future. We worked so hard to ease the body and thus open things up for communication, growth, and healing.

Reach out your hand
if your cup is empty
If your cup is full
may it be again

Let it be known
there is a fountain
that was not made
by the hand of man

A year or so into the whole thing I went to work on a proposal to the U.S. Department of Health & Human Services for our program to become one of the national hospice demonstration projects. Several other people were also involved in the writing and together we produced a proposal that was awarded (our functional and successful program had everything to do with the award). We became a national demonstration project and the program began going through a lot of changes. I did as I intended all along and became a hospice clinical specialist (training, consulting, difficult patients and families). I was betting that VNA would hire someone good to take my place and then the most awful thing happened. The program went under an administrator who didn’t get it except as a career thing and she hired a guy who was just a terrible choice in so many ways. That was a very difficult time for me.

I worked in hospice for about two years. They were extraordinarily intense years of pushing the limits of care, grand innovation, hard work, and the realization of dreams beyond dreams.

Fifteen years later I wrote Terminal Illness: A Guide to Nursing Care. When the book was finished, the editor asked me to write an epilogue and though tired of writing, reluctantly I did. In the first sentence I wrote that the purpose of all this was for the patient and family “to have the opportunity for reconciliation with God, self, and others.” It blew my mind that I wrote that. It was as if, oh, right, there’s the purpose of life: reconciliation with God, self, and others. My life, your life, all our lives. Some of us have farther to go than others, but there it is.

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