End of Life Care

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By Keith Dauch

In the early morning hours of October 28, 1998, Keith Barile, with his heart pounding from a mixture of adrenaline and fear, sat in his car waiting for the morning crew of a Vernon restaurant to arrive. At forty-one years old, he found himself on probation for six criminal convictions, and on this particular morning, he sat in his car, waiting for what would become the culmination of his criminal career. The employees arrived, as they did every morning, to begin preparations for the breakfast rush. Disguised and armed, Keith sprang from his car in an attempt to rob the restaurant.

The attempt failed, and Keith was quickly caught by police. Almost one year later Keith pleaded guilty to, “one count of robbery in the first degree, one count of assault in the second degree, six counts of kidnapping in the first degree with a firearm, and one count of operating a motor vehicle while his license was under suspension.” He was sentenced to twenty-five years in prison.

Today, Keith is housed at the Niantic Annex Correctional Institution. In an opinion piece he wrote for the Hartford Courant, on October 12 of this year, he freely admitted to being the type of person society wanted in prison. He says of himself, “I was selfish and angry and could not be trusted. I cared about nothing and had a propensity for violence.” He also recognized within himself a desperate need to change the type of man he had become.

While Keith transitioned into his new life as a small part of a large prison population, a study by the Department of Corrections was in progress to examine the feasibility of starting a prison hospice program. The idea of Hospice migrated from England and settled in Connecticut in 1974, and it provides the overall care to a patient with a terminal illness, ranging from the physical to the emotional and spiritual. Florence Wald, dean emeritus at the Yale University School of Nursing, who played a pivotal role in bringing Hospice to the United States, and Nealy Zimmerman, Chair of the Connecticut Chapter of the National Prison Hospice Association, recognized the urgent need for end of life care for an increasingly older and sicker prison population.

According to a 2010 study by the United States Bureau of Justice Statistics, 26,200 individuals were incarcerated aged 65 or older in the United States. Connecticut currently houses 328 inmates over the age of 60. Colleen Gallagher, Director of Correctional Managed Health Care states that not only does the national trend show an aging prison population, but that, “People are sicker longer in prison.” She clarifies that a healthy 45-year-old outside the prison walls would deal with the health issues of a 55-year-old inside.

Many studies show that upwards of forty percent of incarcerated offenders report a chronic illness. The prison hospice program has filled a large gap in providing end of life care for offenders.

In the fall of 2000, a little over a year after Keith Barile entered prison, volunteers applied for the first hospice program opening in Suffield, Connecticut. Out of 100 applicants and 40 interviews, 19 volunteers began the training to become hospice workers. Their job would be to fulfill the social and emotional needs of those in the final stages of a terminal illness.

Colleen Gallagher highlights a major difference for the volunteers in the prison hospice program. She explains the prisoner volunteers must deal with their own life and death experiences. They must examine their exposure to death and the feelings the exposure instilled in them. Colleen commented, “We move them to a place of vulnerability, and they have to work through their own issues.”

Over time Keith Barile proved himself as an acceptable candidate for the hospice program. He worked on his fight with drug addiction and he worked through his violence issues, learning to deal with situations in a more constructive way. He settled into the monotonous, time-ending routine of daily prison life, and he accepted his situation by coming to terms with his incarceration. After one full year without a class A or B disciplinary report, Keith became eligible for the hospice program.

The training, on average, lasts approximately ten weeks. But prison life can change from monotonous to stressful quickly, and the training can stretch out to eleven or twelve weeks. During the first few weeks, volunteers are introduced to the history and the purpose of hospice. They also are given classes on the clinical material with which they must be familiar. They gain an understanding of clinical terms, which read like a medical student’s textbook, and they study the signs and symptoms of the dying.

But it appears that in the third and fourth weeks of training, certain skill sets are studied that reach deeper into their own lives and that have affects beyond just working in the hospice program. Keith says this portion of the training taught him, “to appreciate the fragility and value of life.” He goes on to say, “I’ve learned to care about someone other than myself, to give freely without expecting anything in return.”

During the training Keith had an opportunity for deep reflection on his life. Sitting on his bunk, in his cell, while living through the end result of his negative behavior, Keith recognized the avenue for change that he desperately needed. Keith says the, “activities teach participants how to develop empathy, compassion and pride while practicing honesty, integrity, patience and caring.” The hospice program also gives the volunteers the opportunity to put each of these elements into practice each day.

Week three of the training program examines “Compassion and Effective Communication,” skills desperately needed by many who find themselves incarcerated. The volunteers study the “Roadblocks,” to effective communication such as arguing, preaching, and threatening. Many of these roadblocks make up the basic elements of prison conversations. But the lesson continues to teach the proper active listening skills that should replace the roadblocks. The volunteers learn empathy; they learn to allow another person to display negative emotions; they learn they do not have to return those emotions in kind.

The lesson of empathy allows the hospice workers to attempt to understand where the other person is coming from. By practicing empathy each day they work, the lesson settles deeper into their hearts, and they are able to bring that back to their cell block. Most of those incarcerated know what it is like to feel threatened, violent, or they can understand the need to act outwardly their inner feelings of guilt. More than any counselor, they can understand the emotions each other feel, and the lesson of empathy can help break the cycle of violence and anger found in prisons.

Week four dives deeper still with lessons on “Care for the Caregiver.” Burnout is a very real issue the volunteers must learn to deal with. Over time, they develop bonds of friendship with those they care for, and inevitably they lose those they have become close to. Colleen Gallagher says, “Many offenders feel that they can do the program, and as they experience the actual death experiences they have a change of heart some-times.”

To combat burnout, the volunteers are taught ways to deal with the grieving process and ways to care for themselves in order to deal with the impact of loss in a healthy way. Meditation is taught so the volunteers can learn to accept the pain and emotions they deal with while in the hospice program. Breathing in they acknowledge the truth of the emotions they feel, and exhaling they allow those feelings to pass.

Colleen Gallagher concludes by stating, “Connecticut is one of the few states asked to participate in developing national guidelines for prison hospice and palliative care.” The Connecticut prison system has been fortunate enough to successfully navigate the obstacles for a hospice program in the prisons. With great support from the administration, Connecticut, unfortunately, seems to be one of the exceptions in the country and not the rule.

Some critics do not believe the hospice program for inmates matches up well with the idea that prison is punishment but this mindset ignores the fact that eventually the majority of those incarcerated will be released. People who understand and fully embrace empathy are far less apt to commit crimes.

On February 2, 2001, during one of the many graduations for hospice workers held at the MacDougall-Walker Correctional Institution, State Representative Patricia Dillion read excerpts from inmates who spoke about how the program gave them a chance to atone for their crimes. As Nealy Zimmerman, one of the program’s primary architects, said at the event, it gives them a chance to “experience a humane, nurturing alternative to the dehumanizing ethos of the general prison population.”

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