Jane Kolleeny: Florence, could you give us a little bit on your background?
Florence Wald: In 1958, I became the Dean of the Nursing School at Yale, at a time when the university was looking for ways for the professional schools to be integrated into the university. They wanted to have advanced knowledge and practice in nursing rather than only a basic nursing program. There were few studies of what nursing practice was and how it effects patient care. So we were learning research strategy and not only teaching the students, but also teaching the faculty. The important thing about Yale School of Nursing is that it was always based on practice, not administration or teaching.
Cicely Saunders, a physician who saw the suffering of the terminally ill inadequately controlled by the medical profession, founded the modern hospice movement which spread from England to Europe, Africa, Asia and the Americas. In 1963, she came to Yale, having had a seventeen-year period in which she’d been educating herself. She made an enormous impression, telling how she was able to help terminally ill patients’ pain, perceiving it as not just physical in nature but social, spiritual and economic. She had developed ways to treat chronic pain. She included the family‰s suffering and saw the doctors, clergy, nurses and social workers pooling their skills as an interdisciplinary team.
K: When she came to Yale School of Nursing, did she teach?
W: She gave a class to a group of medical students. She made rounds with nurses, doctors, and medical students, gave lectures and ferreted out caregivers who were looking for a new approach and brought together a workshop for those in the United States she knew were at work in the field: Elisabeth Kubler-Ross, Colin Murray Parks, Ray Duff and Leo Simmons among them. We were having difficult times with our students who were taking care of all kinds of patients who were terminally ill, and the doctors were unwilling to be straightforward in what they told the patients and the families. If the nurses stepped in and encouraged the patients to frame their questions so the doctors would answer, most often the doctors would tell the head nurse, “I do not want that nurse anywhere near any of my patients.”
When Cicely came to see what was going on in the United States, it was like opening a door where we had felt completely enclosed. That was what hooked me.
Jane Kolleeny, Florence Wald and Nealy Zimmerman
K: And that’s how you got involved with hospice. How did you proceed after that?
W: Cicely and I kept in constant correspondence. Then, in 1965, I said to my husband, “I think this is the time for me to step out of the deanship [at that time I was 50]. If I really want to do anything in nursing practice, I have to do it now or it will be too late.” I was fortunate enough that we agreed to put aside our concerns for financial security.
K: What was your vision, what did you want to accomplish?
W: My vision was to see if we could launch a similar approach in the United States.
K: To what Cicely had done?
W: Yes. In 1968 we developed an interdisciplinary team. We had a small grant and were able, over a two-year period, to take care of twenty-two patients in the Yale/New Haven Hospital, in the patients’ homes, and in nursing homes. We were able to establish a good working relationship with the hospital, and most of the time patients stayed at home. When the doctors felt the patient was within three months of dying, we offered our services. If he would allow us to keep notes on what was happening, we would be available to the patients whenever and wherever they needed help. Stays in the hospital meant they had to have intensive treatment. If families were overwhelmed or not available, the patients went to nursing homes.
K: What were the greatest insights you had from that first encounter of working with terminal patients?
W: Terminal patients were full of all the things that were going on with their lives: how hard it was to see life coming to a close, how hard it was on their family, ups and downs. Will the money last?
K: Had the concept of a living will, to treat or not to treat, become an issue?
W: It was just coming to the fore. We’re talking about the 60’s, when the whole question about patients‰ rights came out of civil rights and the doctor’s responsibility to inform the patients and include the patient/family in decision-making was called for. This meant a tremendous reversal in how doctors saw their practice. Before then they expected to be captain of the team, making decisions. Informing the patient was left up to their judgment. As medical students or young physicians, they were not educated to communicate with patients. This reversal began a hard time for doctors.
K: How did the vision of the Connecticut Hospice evolve?
W: Our study went for two years, 1969-71. Then Cicely, who had come over for several consulting visits, encouraged us to begin planning.
Henry Wald: Cicely said, .Better get on with it. We used nationwide studies of what the needs of patients were here, since they might be different from those in Great Britain.
W: Connecticut hospice was the first to provide hospice home care, in 1974. The next was the palliative care unit in the McGill Medical Hospital in Montreal, and the third was in St. Luke’s hospital in New York City where they had a hospice team that went around to patients. Those were the first three. The movement spread quickly. By 1975, pressure came from the public wanting it much faster than we ‹new learnersŠ were able to deliver. That was a remarkable societal change. Now there are over 2,000 hospices.
K: To what do you attribute that change?
W: People had experience in their lives of cancer patients being bombarded with intensive treatment, where the families and patients were suffering. When they heard this new philosophy they would say, “If only we had had…” The families, by seeing how death could be handled, were able to keep their relationships open with the patient in a way that they couldn’t before.
K: Because it was too frightening?
W: Yes. Part of the hospice movement has been to educate society. This is where the prison hospice is so interesting. My concern at this juncture is with the health care system and it‰s chaotic growth. Hospice is one of the humanistic patient/family approaches which is trying to survive managed health care. A large, fast-moving system seems inappropriate. My concern is how the various kinds of hospices are evolving. Which ones can survive this chaotic growth? My own bias is that hospice and care for the terminally ill is a natural part of life that belongs in the community along with natural child birth, teaching young people to take care of themselves, mental health, family planning, geriatric care and coping with end-of-life. In the United States we haven‰t been able to convince the public and the government of the need for national health service for all.
K: In terms of medical care?
W: We are a capitalist society not yet willing to do what other nations have done. When I think of hospice in prisons, I believe that most people who are in prison have had a rough time in life and haven’t had any kind of education in how to take care of their health or deal with problems with drugs and sexual intercourse that allows the AIDS epidemic to continue. That’s very important if you think of the numbers of people that are being held for long times. The notion of hospice in prisons will reach a large population. The federal prison in Springfield, Missouri, is a medical center, and from there you go to state prisons and then to community prisons. I visited a prison in Bridgeport, Connecticut, and saw family members coming in and out. It is not only for the prisoners but also for the families. How do you educate that population which is growing and is one of the most deprived in society?
Hospice is an interdisciplinary comfort-oriented care that allows terminally ill patients to die with dignity and humanity with as little pain as possible in an environment where they have mental and spiritual preparation for the natural process of dying. Each patient has a hospice team made up of physicians, nurses, chaplains, social workers and hospice volunteers. Palliative care, symptom management and family support are crucial parts of the hospice philosophy.
Special thanks are due to Jane Kolleeny, Florence Wald and Nealy Zimmerman. They are working together in the State of Connecticut, researching care for terminally ill inmates within the Department of Correction.