The patient is in control. My fancy policy-manual term for this is: "autonomous decision-making at the end-of-life." What it means is: "Whose death is this anyway?" It reminds us to ask, even in prison: "How does this inmate want to die?" In the community, the patient is in his home territory. Even when we don't agree with his decisions, even when he won't agree to our aggressive symptom-control measures, the hospice team ultimately defers to him. But if the prison administration has not settled the question of whose death it is, you don't have hospice care. You may have good nursing care and meet the need for basic comfort, but it is not hospice care.

But--the inmate in control? Really? Isn't that a bit dangerous? If we start with that, aren't we headed down that well-known slippery slope?

Hospice care was designed to meet not just physical needs, but the needs of the whole person. Pain is not just physical; pain can be of the emotions and of the spirit. Early on it was recognized that a team effort provided the best way of responding to all of these needs. So doctors, nurses, social workers, and chaplains all play a role.

In a prison, what do you do about security personnel? Are they included in the multi-disciplinary team? If security isn't behind the concept, the program is sunk. Security controls inmate movement, security controls the degree of interaction between inmates, security controls inmate property. The inclusion of security in the multidisciplinary team and a recognition of their contribution are necessary for a viable program.

The patient and family are the unit of care. In community hospice training we caution team members to be sensitive to who is "family": cousins? neighbors? friends? Operating a hospice in the prison setting requires a similar redefinition of family. Who is family: other inmates? staff? outside family?

Volunteers are the heart of hospice. The modern hospice movement was founded by volunteers. The respite, the friendship, the caring that volunteers give had never been provided within the framework of any health care delivery system. Volunteers are so essential, so vital, so hospice, that the use of volunteers was actually written into federal and state Medicare regulations. They are everyday people who make a commitment to care for vulnerable others.

I close my eyes and listen: the words of encouragement and understanding and the search for self-knowledge that I hear from the inmate volunteers are the same words I heard on the outside during my seventeen years training community volunteers. When I open my eyes, I am surrounded by eight murderers, two armed robbers, one sex offender, and two men who solicited for murder. The chance to volunteer, the chance to succeed, the chance to atone, the chance to be good are so much more important in the prison setting.

Know who your patient is. On the outside we mean that sometimes the person needing support is not the person dying, but a family member. In prison, I would change it to "Know who is benefiting from hospice care." Sometimes it's the inmate volunteer! Sometimes their motives for volunteering may be complicated, but none of them have left the experience unchanged.

The basic concepts of a prison hospice are the same as those for a community hospice. The differences are only procedural. How will you train volunteers? How will you allow inmates' movement? To what degree do you allow special circumstances to supersede segregation time? To what extent do you change rules for visits by the family? How do you give inmates control of their own care? And how do you define your team? Each prison system should have the freedom to answer these questions in their own way. But if you forget the concepts of pain control, patient autonomy, multi-disciplinary team, patient and family as unit of care, volunteer--you can call your program comfort care, but don't call it hospice.

Inmates, like patients in the community, shy away from a program that confronts them with the fact that they are dying. As a result, the current length of stay in community hospices is much less than the six months mandated by Medicare--fewer than thirty days, according to my sources on the streets. To confront dying is a major life step, regardless of where one is living.

I encountered some surprises in working with inmate patients, some of which have been mentioned in the few articles that have appeared about prison hospices. My experiences confirm what others have reported. And I have a few observations of my own to add.

Inmates are hesitant to come into the hospice program for several reasons:

If an inmate accepts that his condition is terminal, he doesn't want to die in prison. Nothing signifies defeat as much as dying in prison. Inmates want to prolong curative treatment if it offers just a couple more months of life, because "Man, I've only got six more months...a year...eighteen months to do!"

Inmates do not trust correctional medical care in general, and the hospice program falls under that umbrella. They perceive it as "the State's attempt to deny us life-saving and expensive care."

Hospice acknowledges the patient's vulnerability, but inmates cannot afford to appear weak and needy. They are fearful of being exploited, of losing their macho image: "I don't need anyone to hold my hand!"

I was surprised to see that inmates can be non-compliant with pain medication. Some people expect to see drug-seeking behavior; instead I see drug "stoicism." Until the very end, some inmates are fearful of being perceived as not alert to their environment. And inmates distrust other inmates, even if they are hospice volunteers. They feel the volunteers will use what they learn to hurt the patient or his outside family.

And I have learned this: caring still matters. I may not be able to establish rapport and trust as quickly as I did working with the people in my rural white community, but it is still possible. Everyone on the hospice team has to make the basic commitment: we are starting from square one; all judgments need to be suspended. It doesn't matter what the inmate did to bring him to prison. It doesn't even matter what kind of person he is now. The prison hospice makes the leap of faith: it doesn't matter! This suspension of judgment means providing good care regardless of background. You don't have to like each inmate, but you are obligated to provide good care.

For dealing with the difficult psychological dynamics such as anger and paranoia, I have no easy answers. I recognize that anger is only a mask for fear; if I identify the fears, I can start to address them.

Ultimately, my aim is that the inmate know that here is a group of people who are not going to walk away. To a person who knows that the hospice team is all he has, I can make one promise: you will not be alone.

Finally, some observations about the care and feeding of inmate volunteers. I am X-Files fan. Those of you who are likewise both X-Files fans and correctional workers can relate with the statement: "Trust no one." But the use of inmate volunteers requires that we "trust someone." In fact, we have built a program that requires that we trust inmates. Sometimes it scares me because I know the day will come when one of them fails the program, and the program will suffer. At Dixon we are trying to protect against this the best way we know how. Most of the measures are double-sided: they protect the system, but the inmate volunteers also benefit.

Volunteers must pass an extensive vote sheet that requires approval by the hospice coordinator, the counselor, security, and all three levels of wardens. The vote sheets are not even circulated if there has been a rule infraction in the last six months.

From day one, either in pre-training interviews or on the first day of training, the volunteers' responsibility as pioneers is emphasized: they are special, they were chosen. But with that comes responsibility. One rule infraction will result in suspension or removal from the program. The program can't afford jerks.

The training is deliberately long--fourteen weeks. The inmate's responses in class, his attitude, his demeanor will help to confirm what his intentions really are. Some of the interactions during training also assist the inmate in questioning himself, finding out what is hard for him, probing his own inner experiences, knowing how those experiences will influence his caring. The leaders will later make pairings of volunteer and patient based on these strengths and weaknesses.

The volunteer pool should be limited to a manageable number. Someone has to know everything that is going on within the program. Someone has to know who is doing what with whom and whether it is within the assignment. The prison is too often a place of subterfuge. If the coordinator loses contact, the program becomes a joke.

The volunteers must receive the respect they deserve. Let them know that they are an important part of the team, that their opinion and experiences matter. At monthly volunteer conferences, each active volunteer can relate his experiences and the others can learn from them. The volunteer should be cloaked in the satisfaction of knowing his work is important.

Take pride in your group. They are facing a challenge of the spirit, so let them soar. Let their atonement speak for itself.