Vol. 20 Issue 17
Hospice Behind Bars
A new hospice program in Virginia helps prison inmates face death.
You're sitting in front of the doctor, knowing you have severe abdominal cramping. Then you hear him say a word that will change your life: cancer.
Despite your initial shock, you're given only two minutes to ask questions and then you're escorted out and locked into a room alone where all you can do is think about the word "cancer" until you want to scream.
Sounds like a nightmare.
Add into the picture shackles and a long ride in the back of a locked van from the doctor's office to your cell, and you're describing the experience of thousands of prison inmates facing terminal illnesses.
Meeting Needs Well
Donna Moore, RN, decided to change that.
Moore is the director for the Virginia region of Prison Health Services, a national company that provides medical care in eight of the state's prisons. Having had personal experience with hospice, she decided two years ago that a similar program would create many positive changes to end-of-life care in prisons.
Little did she know then that the National Commission on Correctional Health and the American Correctional Association the JCAHOs of prison healthcare soon would recommend prison hospice programs if states allow them.
Under Moore's direction and planning, five Virginia prisons launched hospice programs last September. In October, Fluvanna Correctional Center, a women's level 3 facility in Troy, VA, followed their lead.
"I think if we did not have this program, we could have met the inmates' needs, but I don't think we could have met the needs as well," said Lisa Whitlock, PhD, RN, team leader for the hospice program at Fluvanna.
Moore named the program CHOICES: Choose Health Options, Initiate Care and Educate Self. She wanted to emphasize that inmates have a say in their course of treatment. She found an inmate's bill of rights on the Internet that she has posted in the prison medical centers.
"In the past, if a nurse heard an inmate refused to take his medications or go to the doctor, they said 'oh, he's non-compliant,'" Moore explained. "But he has a right to do that."
Time for Questions
Moore's biggest frustration with the old way of doing things was that the inmates had to sit alone knowing they had a terminal illness but unable to talk to anyone or ask any questions.
Now, the inmate can choose to enter the hospice program any time after being diagnosed with a life-limiting illness. The team sits down and answers all the inmate's questions, educating him or her about the various treatment methods available.
"If it's cancer, we tell them about the cancer. If they're scheduled for radiation therapy we would describe how they will be measured for a steel form to do the radiation," Moore said.
The interdisciplinary team, which includes nurses, counselors, social workers, a dietitian and a chaplain, also asks the inmate for permission to talk to their family about their diagnosis. If the inmate OKs it, the medical staff contacts the family to answer their questions and explain the treatment planned for their relative.
"By the time the inmate is in the final stages of the disease process, they will feel comfortable enough to talk about a do-not-resuscitate order or advance directives," Moore explained.
Every aspect of the prison works closely with the medical department to meet the needs of the inmates for every stage of the disease.
"A couple of inmates in their final stages of life have wanted to have confession of what they did. The chaplains at the prison work with them," Moore said.
Fortunately, wardens at all six facilities were open-minded about introducing the hospice program. Initially, they had concerns about the security aspect of the plan, but she reassured them. She wanted them involved, but said it wouldn't be a huge burden.
Security attends the weekly or biweekly hospice team meetings. Otherwise, security was already accompanying inmates during medical visits to the medical center.
Thanks to tolerant wardens, every prison allows family visits to the infirmary during the last 24-48 hours of the inmate's life. Families can sit with their loved one, hold her hand or cry.
"We don't want anybody to die alone. We don't want anybody to be in pain," Whitlock said.
In one instance, a family could only come at midnight, and the prison accommodated them. It's that kind of cooperation that allows the CHOICES program to go above and beyond.
"We have received some of the nicest letters from families thanking us for arranging for them to come in and visit their loved one, and for letting the family know the status and helping them understand the disease process," Moore said.
Healthcare workers at Fluvanna try to get clemency for the hospice inmates, too, so they can die at home. When that's not possible, their prison "family" takes on that role.
Living within the closed walls of a prison, inmates tend to create families among one another. In the female institutions, Moore said, they'll call each other "mother" or "auntie" or "sister." Thanks to CHOICES, these surrogate relatives can visit an inmate, too. They help them write letters to family members, pray with them, read the Bible or just sit quietly. Bereavement services after the inmate's death include these surrogate inmates as well.
"The thing to bear in mind is that, unlike your conventional hospice program where the family is very involved, the inmates don't necessarily have that benefit here," said Francine Wood, LPN. "Their support system comes predominantly from other inmates and the CHOICES team. It's critically important that we develop that network."
The CHOICES program cannot fully mimic the type of hospice program you might find outside a prison's walls. These inmates are still incarcerated, so security officers are always present. Staff count the sharps and float the medications to avoid anyone using them as a currency with other inmates. But Moore said prison nursing allows for a special kind of care.
"In hospital nursing, you see the patient maybe 2-3 days. Then you never see them again," she explained. "Here you see them for years and years. You get to know their medical problems. In prison you have people with absolutely no education and people with PhDs. You learn on what level you can talk to them."
As the pharmacy manager at Fluvanna, Wood sees the most ill inmates almost daily to distribute their medications. Consequently, a trust grows between the inmates and the staff so "they'll let me know if they're having a side effect," Wood said.
Whitlock said the Fluvanna program hopes to start support groups for terminal inmates, a request from the sick women themselves who are looking for others to talk to about their experiences.
Sometimes security officers can be resistant, wondering why so much is being done for the inmate, Whitlock added. She works to educate the officers about the importance of a hospice program in a closed community.
"I feel what we've done so far has enhanced the lives of the inmates," she said.
Emily Wengert is a freelance writer in New York and a frequent contributor to ADVANCE.
15 Seconds of Fame
Sick prison inmates at Fluvanna Correctional Center, Troy, VA, sometimes appear on TV. They're not stars in the next reality television show, but they are starring in their own medical drama.
Thanks to advanced telemedicine technology at the facility, doctors 55 miles away at Virginia Commonwealth University in Richmond can examine inmates at the prison.
"For the first time ever in the United States, they did telemedicine for hospice care at Fluvanna," said Donna Moore, RN, regional director with Prison Health Services, which staffs Fluvanna.
For a dying inmate, putting them into an ambulance for a jarring 45-minute ride to the state-approved medical facility where they can be seen is not ideal, Moore said. Instead, doctors can now interact with them from afar.
The technology can allow a doctor to zoom in on a lesion or anything else they need to see up close. A nurse, physician's assistant or nurse practitioner in the room with the inmate acts as the doctor's hands by putting the stethoscope on the patient or running an ECG.
"Telemedicine is absolutely fascinating," said Moore. "They can listen to their heartbeat. They can run an ECG, and the doctor at the hospital can look at it. It's instantly sent to them."
– Emily Wengert