Prison hospice - Working with volunteers in prison hospice and palliative care programmes
Keywords: volunteers, hospice, palliative care, prison
'Hospice to me is a sacred privilege, sacred because of the passage from one existence to the next, and privilege because I was allowed to share in it.'
This was written by a 40-year-old inmate serving 25 years for voluntary manslaughter who was one of our first volunteers.
Over the past 25 years I've been involved in many hospice and palliative care services. The most interesting was in the South Carolina (USA) state prison system where I was hired in 1997 to set up a programme that would serve terminally ill inmates of all diagnoses with the goal of allowing them to die in prison - in comfort, with support, and with dignity. I worked with the programme for about 2 years. We chose six different high-security prisons in different parts of the state, and we trained palliative care interdisciplinary teams in each.
Since we did not want these inmates to spend all of their time in the infirmary, we needed volunteers to assist with their care. Security is a major issue, so volunteers from the outside community were not feasible. We recruited and trained inmates from within those institutions to provide the following services: companionship, reading, talking, feeding, maintaining hygiene, and personal grooming, letter writing, spiritual support, assisting with ambulation, passive exercise, and/or any other daily living activities as well as constant companionship at the time of imminent death. These activities were all performed under the supervision of prison's medical and nursing staff. The volunteers supplemented the services provided by the prison staff and they provided the companionship and loving care that otherwise were rare in these infirmaries.
Much to our surprise and delight, more than 200 inmates from across the state applied to become hospice and palliative care volunteers. Here is a quote from one of the applications in answer to the question, 'Why would you like to be a hospice volunteer?'
'My life has been filled with the things I have taken or been given, I would like to give something back. The saddest thing I can think of is dying and feeling like no one cares.'
Because volunteers provided care for other inmates who were vulnerable, and because they sometime worked with the inmates in the infirmary, these volunteers were carefully screened. Here are some of the requirements we set: they must have a minimum of one year remaining on their sentence, they must have no serious disciplinary offenses within the last year, they must not have been convicted and found guilty of any drug/substance disciplinary offenses within the last two years, they must have been actively participating in a work/education programme for at least six months or have a valid exemption, they must exhibit no suicidal tendencies or have made any suicidal attempts or gestures within the last 18 months, they must have at least a high school diploma or an eighth grade reading/writing level, and finally, they must be found physically and psychologically fit.
Each inmate's record was reviewed and then they were interviewed by the interdisciplinary team which included a social worker, a chaplain, a nurse, a senior security officer, and a person from classification, and myself as the co-ordinator of the programme statewide. In our interviews, we tried to determine motivation for volunteering. Some clearly were interested in 'conversion' to their own religious beliefs. This was an activity that was not permitted because, as I mentioned earlier, our patients were vulnerable in this setting. Inmates convicted of drug crimes were closely scrutinized, since they would be working around controlled medications. We chose more than 80 inmates (about 15 from each facility) from those interviews.
We gave the volunteers 20 h of training provided by our own staff as well as professionals from local hospices. The training included the following: spiritual aspects of death and dying, psychosocial aspects of death and dying, hospice and palliative service volunteer rules, code of conduct,† patient rights,‡ occupational exposure (i.e., blood borne and airborne pathogens), physical process of dying, care and comfort measures, communication skills, bereavement process (i.e., self-care and coping skills), stress management, relaxation, family systems and roles, understanding diseases and conditions, and patient confidentiality.
These volunteers provided such loving and skilled service to the patients assigned to them that many of patients were able to stay 'in the yard' (in regular prison cells - their homes) up until the final days and hours of their lives. We had instituted a plan for constant companionship during the final hours and days of life so no one would die alone. About 40% of our patients were suffering from HIV/AIDS, about 40% had cancer, and the remainder had various other end stage diseases. On average, we had about 10-15 deaths per year, many of our patients outliving their prognoses by years as one might expect with the increased psychosocial support.
Many of these volunteers thanked us for the opportunity to serve. One inmate told me that there are only two times that you can cry in prison - in the shower and in bed in the middle of the night. He and others were grateful for the opportunity to 'care' for another human being. This position as a hospice and palliative care volunteer gave them permission to be concerned about and care for another human being. It allowed them to be human again.
One of our patients had amyotrophic lateral sclerosis (ALS), a progressive and ultimately fatal neuromuscular disease. Thanks to his volunteers, he was able to stay in his regular prison cell until just hours before his death. He required 24-h a day care because he had minimal mobility of his arms and legs. Until the day of his death, his caregiver-volunteers would stand him at the toilet so he wouldn't have to suffer the indignity of using a urinal. One of the volunteers requested to become his roommate so that he would be there to care for him at night.
Another of our patients had HIV/AIDS. He'd been very close to death a couple of times and wouldn't sleep at night because he was afraid. During the final weeks of his life, two volunteers provided him with night companionship, and he slept when the volunteers were there with him. One worked from 9:30 p.m. to 2 a.m. (he said he'd be up anyway, so he would just as soon spend that time with the patient), and the other came in at 2 a.m. and was there until 5 a.m. The two of them did this 7 days a week and they wouldn't hear of replacements or nights off. When he was really sick, he was very uncomfortable and restless and had problems breathing, yet he would refuse to have the oxygen on all the time, so the volunteers would put him in a wheel chair and roll him up and down the hallway - slowly, and for hours on end - because it comforted him.
Our programme required the support and trust of the correctional administration. I was called to another prison facility to see a 26-year-old young man with HIV/AIDS. He had not responded to drug therapy and had lost 23 kg in the previous 9 months. He told me that he had lost so much weight that his facial structure was coming through his skin. Most of the pain he had was related to peripheral neuropathy. Although the doctor was an internist with a subspecialty in oncology, he wasn't sure if the patient was fully aware that he was dying and that it was going to happen fairly soon. He admitted that talking to patients about their prognosis wasn't his strong point. After the patient was at ease with me, I asked him how long he thought he had. He said, 'a few months.' He didn't want any further treatment and didn't want cardiopedmonay resuicitation. All he wanted was to get to a facility closer to his family. As it happened, his family lived halfway between two prisons where our programme had been started. However, there was a problem. He probably wouldn't have been welcome in either one of them. This young man had not had a very clean record in prison, and he had a 'history' in both of those prisons. He had been involved in a major riot in one prison and spent a lot of time in lock-up for major acting-out behavior in the other.
I ended up making a personal appeal to the warden at the facility where he'd been involved in the riot. She was one of the nicest and most fair-minded wardens in that system, yet I feared that the request might have been too much even for her. But she agreed to allow him to be transferred to her prison infirmary and be a part of our programme. She even visited him there and they had an opportunity to make peace.
The care provided to the patients in prison was remarkable. The difference this programme made in the lives of the inmate volunteers was miraculous. In his own words, a 25-year-old volunteer facing life imprisonment for murder tells about his experience:
'I've learned the true meaning of love and compassion. Being a volunteer has helped nurture this tender side of me. Regardless of one's ethnic group or sickness one may be suffering from, I don't see the sickness, I see the inner person. The Spirit of God in that person. My intention is to leave this prison system reformed. Working with some of the patients has given me a profound insight on life. As each day passes I come to realize how precious life is. There are so many people, who would like to get another chance at life. This has given me a big part of this puzzle we call life.'
There were several important factors that enabled these volunteers to transcend their past. First, this experience provided them an opportunity to care for another human being. As mentioned earlier, this was not part of the 'prison culture.' Second, for many of these volunteers, this experience gave them the occasion to examine their own mortality, which led to an examination of their 'legacy' - the meaning of their life. Providing loving care was discovered by many as a better purpose for life. And third, there was affirmation in this experience. This affirmation came from the patients and their improved life situations as a result of the volunteer involvement. Many of our prison staff verbally shared their appreciation. When the volunteers in one prison did a good job with a particular patient(s), we gave them a special meal like pizza or fried chicken. That was something that they couldn't normally get, so it was a special way of saying thank you.
No volunteers were lost due to breaking the code of conduct in their behavior with a patients/clients or in relationship to their volunteer work. A couple of our volunteers were terminated because of behavior unrelated to and outside of the programme. Some of our patients did cause medicaltion-related problems. When the patient was not in the infirmary but out in the general population, we couldn't provide narcotics for pain because even when narcotics were crushed or given as a liquid, patients could use a cotton ball in their mouth to retain the drug, and then they could sell that cotton ball.
In this article, I cited just a few examples of the many lives that were touched by this innovative service. Other prison systems that have instituted hospice and palliative care have similar stories of dedicated and skilled care as well as stories of transformed lives of those given an opportunity to serve. One of our volunteers talked about his hospice experience as being his rehabilitation. He said, 'we don't have any programmes in here to help us make changes, but hospice has helped me do that.'
Hospice programme code of conduct
1. I represent the hospice programme in the eyes of our clients, the public, and the institution. I will present and conduct myself in a professional manner at all times. I will adhere to the confidentiality policies of the hospice with relation to our clients, their friends and families.
2. I am an invited guest in my client's space. I will respect and accept, without judgment, the differences in my client's way of thinking compared to my own including their beliefs, lifestyles, and attitudes.
3. I will give my client my caring attention, and I will be prompt and reliable in the performance of my obligations.
4. I will support and care for my client and their support systems. I understand the choices and decisions are made by the client, family, and friends. I may offer information and alternatives, but I will not interfere with their decision.
5. I will acknowledge and respect the doctor-patient relationship. I will accept, without judgment, health care decisions made by the client.
6. I accept my own personal limitations and those of my fellow volunteers, and I will not promise to attempt more than I can handle. If I find that I am becoming involved beyond my own physical or emotional capabilities, I will contact the hospice coordinator or the team leader for further directions.
7. If a problem arises that cannot be resolved within the team, I or the team leader will communicate the problem to the hospice co-ordinator.
8. I will be sensitive to my client's extraordinary needs, especially their inability to always be sensible, reasonable, or grateful for my help. I will recognize my client's overwhelming physical and emotional burdens, and will not allow my own feelings or agenda to distort my sensitivity.
9. I will not impose my religious or spiritual beliefs on my client. I am not there to impose my personal feelings or agenda in anyway. I understand that this is the client's time to discuss or do whatever she/he may wish.
10. I will not accept gifts from my client or from his/her family.
11. Above all else, I will recognize that confidentiality is an absolute requirement and that any personal or medical condition I observe must be kept in the strictest confidence.
I have been provided with a copy of this code of conduct and have been instructed on the same. I understand that I will be terminated from the volunteer programme if I violate this code. A copy of my signed code of conduct will be placed in my volunteer file.
Signature of inmate Date Signature of hospice volunteer coordinator
The hospice bill of rights
Patients with an irreversible illness may be too upset or distracted to assert their rights, therefore, a patient advocate needs to know these rights and provide patients with the opportunity to remain in control of themselves and their environment while dying. A bill of rights for the dying person was created at a workshop on 'the terminally ill patient and the helping person' in Lansing, Michigan, in 1945. It clearly states what dying people need and want:
· I have the right to be treated as a living human being until I die.
· I have the right to maintain a sense of hopefulness, however changing its focus may be.
· I have the right to be cared for by those who can maintain a sense of hopefulness, however changing this might be.
· I have the right to express my feelings and emotions about my approaching death in my own way.
· I have the right to participate in decisions concerning my care.
· I have the right to expect continuing medical and nursing attention even though 'cure' goals must be changed to 'comfort' goals.
· I have the right not to die alone.
· I have the right to be as pain free as possible.
· I have the right to have my questions answered honestly.
· I have the right not to be deceived.
· I have the right to die in peace and dignity.
· I have the right to retain my individuality and not be judged for my decisions, which may be contrary to beliefs of others.
· I have the right to discuss and enlarge my religious and/or spiritual experiences, whatever these may mean to others.
· I have the right to expect that the sanctity of the human body will be respected after death.
· I have the right to be cared for by caring, sensitive, knowledgeable people who will attempt to understand my needs and will be able to gain some satisfaction in helping me face death.