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Training for the Most Difficult Transition
Hospice workers learn to guide patients through the end of life
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Business New Haven
11/26/2001
By: Sheila A. LaSella
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Although death has been on Americans' minds recently, as time passes it will resume its normal residence in the recesses of the consciousness where it doesn't touch our daily lives. Perhaps we will continue to think about it more than usual with the threat of terrorism on our doorstep, but most of us make a conscious decision not to think about mortality on a daily basis.
There are some people, however, who think about death and work with death every day - and that's their job. For hospice workers, coping with death is their vocation and caring for the dying is their choice.
Hospice is more about comfort than cure. Hospices aims to bring dignity and a compassionate environment to people who have six months or less to live. In addition to patients, hospices typically house a team of medical professionals and volunteers who work with patient and their families to provide physical, emotional and spiritual support through life's most difficult passage.
This care may be provided in a hospice facility. More often hospice workers will go to the patient's home, where the afflicted has chosen to die. The hospice team most often comprises physicians, nurses, home health aides, clergy, counselors, social workers and volunteers who are on call 24 hours a day, seven days a week.
Explains Diane Bell, volunteer coordinator with Connecticut Hospice's Shelton and Norwalk home-care Offices: “People do hospice work because they get so much more out of it then they can possibly give. They step into lives and homes of people who are at a difficult time in their lives and are able to help out. They receive a good feeling for doing something for people at this time in their life.”
Volunteers who decide to give their time to hospice complete a seven-week training program which covers areas such as death awareness, spiritual issues of the dying, listening and communications skills, bereavement and the role of the hospice nurse. The training in general is more emotionally oriented then technically based.
A central aspect of hospice care is accepting the patient's imminent death and not trying to change or “improve” them. The hospice worker must realize that she/he is not in control of the situation, but is there to supply comfort and support on any number of levels.
During training, volunteers receive instruction on developing listening skills so they can be receptive to whatever words - harsh, gentle or other - a dying person may feel the need to articulate. This training tales place in large part through role-playing, in which students are placed in real-life scenarios they may expect to encounter with the dying, and then working with their response to the situation.
“There is a difference between a good listener and someone who is attempting to give advice,” says Bell. “The training establishes what is appropriate and what is inappropriate.”
Spiritual issues of the dying are presented by a pastoral counselor. Based on the counselor's experience of working with the dying, the group is taken on a journey of the hospice patient which allows them to explore death. What they discover is personal and allows them to empathize with their dying patients.
Pat Nucifora, a licensed clinical social worker with Connecticut Hospice, leads training sessions on death awareness to give volunteers a better idea of what to expect when they enter the patient's home.
Training begins with a discussion on what motivates volunteers to choose work with the dying. Many volunteers had a family member who received hospice care, while others are at a point in their life where they are inspired to give to others.
Nucifora then screens a film called My Life about a young man diagnosed with cancer at the same time his wife discovers she is expecting their first child. The film depicts the young man's struggle with the disease and process of dying. A discussion follows where the group expresses members' thoughts and feelings on the subject, and then deals with related issues that arise.
For volunteers who haven't experienced being close to someone with a terminal illness, it's a good way to show what it's like for patients and families and begin to gain an understanding of the process. The purpose is to give volunteers an idea of what they may encounter with patients.
“At times the volunteers [encounter] difficult patients and families, so they need to have patience,” explains Nucifora. “They also have to learn not to take anything that is said or done personally. For some of the dying it's just the way they cope. They are trying to make the best of a difficult situation - and it's hard some times.”
In February of this year the first group of inmate volunteers at the MacDougall Correctional Institution, a maximum-security prison in Suffield housing an acute infirmary, were graduated from the National Prison Hospice Association's (NPHA)training program. The graduation was attended by state Department of Corrections Commissioner John Armstrong and the keynote speaker, New Haven State Rep. Patricia Dillon (D-92).
Of a prison population of 900, approximately 100 inmates expressed interest in the training program. Of these, 40 were eligible and 19 were chosen.
Many of the volunteers had committed serious crimes, including homicide. “They have examined their crimes and been through a transformation,” explains Nealy Zimmermann, who chairs the Connecticut chapter of NPHA and is a member of its board of directors. “They now want to be able to give in an environment where there is little opportunity to do so.”
Some inmates wish to atone through volunteering, while others may have had family members who received hospice care while dying and wish to extend this compassion to their fellow inmates.
The training program began with one of the founders of hospice, Florence Wald, presenting the organization's history. The inmates were then given an overview of NPHA history by Zimmermann.
Next, the 19 men moved into the core of the training - an experiential process designed not only to help participants learn how to care for the dying, but as well encouraging them to examine their own beliefs and value systems with regard to death and dying.
The men were asked to write a letter to someone with whom they had unfinished business. Often, a sense of leaving certain aspects of life unresolved is a crucial factor with the dying. The end of one's life presents a situation where there may be no chance to reconcile past regrets, and this may elicit powerful emotions.
Through this letter-writing process, inmates are better able to confront unfinished business in their own lives, and thus be able to relate better to their patients.
Volunteers are introduced to the idea of artistic expression as a medium through which to cope with death. Through drawing, for example, a dying person is able to express him/herself creatively in a non-verbal manner, which can have a therapeutic effect.
Writing poetry or a journal is also covered in the training as a way for the patient to move through the final stages of life.
While most hospice volunteers outside of the prison setting give four to five hours a week of their time, the men at MacDougall have four- to five-hour shifts - five days a week. Both the inmate and the dying person find themselves in the same situation - their incarceration is shared, and a poignant bond.
“The inmates are like a midwife in reverse,” says Zimmermann. “They are helping someone leave the world.”
While many of the skills to care for the dying can be taught in the classroom setting and one can learn how to ease patients' physical pain, often the most healing abilities cannot come from a textbook. Characteristics such as compassion, generosity and patience that hospice workers offer come from the heart - not from the head.
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