|Jane Kolleeny: In a prison hospice program, in addition to the medical staff, there are hospice volunteers among the inmates. What do you think about inmate volunteers in terms of the fact that they might have a violent background? Do you think a hospice volunteer program might have some rehabilitative qualities?
Florence Wald: Any volunteer who‰s helping someone else, having the experience of doing something kind or helpful for another person raises self-value, self-image. As they are doing it for that person they are also doing it for themselves.
K: Which is a wonderful thing. However, there is a strong attitude in our society regarding people who are in prison: these people have committed crimes against society and they are in prison to be punished. Why should we care about their well-being? Our tax dollars pay for educating them. Why should we let them have fitness rooms where they can work out? Why should we support a hospice program? Who cares about these people?
Henry Wald: That‰s one school of thinking, and they say it‰s costing more to keep inmates where they are than to find some way to bring them back into society.
W: I am not an expert on violence and how it erupts. But I see the growing number of poor people living in decaying city neighborhoods alienated from those who have been able to support themselves. They are isolated with little opportunity to lead a productive life. Look at their place in society. Go through Harlem, New Haven or Hartford. If we had to live in conditions like these, what would it feel like? I‰m in a car, and I can go. They don’t have a car.
K: State by state, legislation determines the policies regarding discharging prisoners when they’re terminal. Some can be discharged to their families, and some can be discharged to a local hospice or hospital, if they committed a lesser crime. If they are a murderer, they won‰t be discharged. Do you have any comments on that?
W: It is important to know what these people are going through while they are in prisons, their experiences of being terminally ill. Information from the volunteers, what problems they have encountered, is also important. I think we can learn a tremendous amount from prison hospices.
NZ: Do you think our society is open and willing for prison hospice programs where prisoners are specially treated?
K: There are free-standing prison hospices already where prisoners who are discharged are taken care of. There are also hospice programs within the prison walls. For a prisoner who is dying, there might be tremendous regret or renunciation, or maybe anger, discontentment and unwillingness to accept, bitterness. Those things that happen when you’re dying anyway would be exaggerated among prisoners. For volunteer inmates to observe and support that effort is interesting to think about, and hospice training becomes important.
W: Training and supporting. But listening comes first.
K: It would not cost tax-payers money for inmate volunteers to help terminal patients. It would also have rehabilitative qualities for the inmate volunteers as well as helping people who are dying. It seems overall a good thing to do.
W: – – Economically.
K: – – And psychologically. According to the media, relatives of murder victims usually want vengeance. If they can punish someone who has committed a crime, that will alleviate their suffering. For example, if they can punish the killer of their daughter, put the killer away, that will be a new beginning for them. That‰s the only way they can achieve some sort of peace; it‰s an-eye-for-an-eye kind of attitude.
NZ: But on the other hand, doesn‰t frgiveness rehabilitate both the victim and the perpetrator?
W: We know forgiveness is necessary for people on the outside, and there is less opportunity in prison for that forgiveness to take place. It is important to allow for that healing, for the patient and other people.
K: What is it like to sit with someone who is dying? What kind of support do you provide? Is it just being there?
W: There are many variables. For example, physiologic crisis. If a patient has respiratory distress it can be very scary for the patient and family. But when dying is on a smooth trajectory, it is not frightening. Some patients are conscious and want to communicate up to the last minute. Of course, the trajectory depends on how patient and family are communicating, how much they’ve been able to discuss and whether they are at the same point of ability to let go. A good sense of humor helps. I admire the nurses who, through music or a phrase, can get a whole group of people – patients, families, nurses – into a dialogue. It’s a constant dance, in a way, of getting a sense of what’s going on and then taking risks. There are these wonderful things, the “hospice moments” where everyone is working together, the staff, the patients, the family. They know what they are trying to accomplish, and not only get over an obstacle, but leap over it. It’s a collective experience. Exactly what makes it work, I don’t know. But it’s powerful when you see it.
K: People are tentative and fearful about being around someone who’s dying.
W: That takes experience and the important part of the training is to make the person who is the helper confident that they can do it. You‰ll have bad experiences too, where things don’t go right, everybody tries and it just doesn’t come off.
K: With regard to what some might call delusional behavior, or thought patterns among the dying, can you comment on that?
W: If you don’t quite get what the patient is talking about, you try to figure it out. As the patient comes closer to death, they are often beginning to think in terms of an afterlife. They are either remembering or actually seeing, certainly they believe they are seeing, people important in their lives who have already died. There is a lot of data being collected now on that whole division between life and death. People are looking at it. When Elisabeth Kubler-Ross first talked about it, everybody said she had gone off her nut. But with experience, people are more respectful of the possibility that there’s only so far we can go. The rest has to be experienced by people who are on the point of death. In our own experience of what we see, each of us has a different end point. My own, for example, is the realization that breathing stops but the presence of that individual is still in the room. Such a presence can last as long as a few days.
K: Do you think a patient who’s dying goes in and out of the experience of death?
W: Yes, I do.
W: I think that happens. The same thing can happen if you go through any kind of crisis. When it’s death people have gone through, it is even more compelling. In terms of prison hospices, I am concerned about the size of the group, both patients and volunteers, and that we know how vast their experience is and how it is dealt with. They are a part of the total population, mostly disenfranchised peoples, which our health care system knows little about. The development of prison hospice care may only come through volunteer groups within and outside of prisons being in contact with one another. We have much to offer and much to learn from those who die in prison and those who help them. It is a disenfranchised population. We need to know if we can help healing to take place. Can fellow prisoners surpass prison staff and non-prison volunteers in understanding and support?