March 3-9, 2005
VOL 124 NO. 8
Walking Down the Path Together
By Claudia Mathis/ SUN staff writer
In a world that is sometimes violent and harsh, it is comforting to know that an organization like Hospice & Palliative Care Associates exists for terminally ill patients and their families.
The non-profit organization provides a compassionate and dignified alternative for people with an incurable illness and limited life expectancy. A team of professional staff (a physician, nurses, social workers, and pastoral and psychosocial care counselors) and volunteers bring the Hospice philosophy of dying with dignity to patients and families. These professionals provide physical, emotional and spiritual support as well as the equipment, supplies and medication needed to ease pain, address the symptoms of the patient’s illness, and enhance the quality of the patient’s and family’s lives.
Physician Dame Cicely Saunders introduced the idea of specialized care for the dying to the U.S. during a lecture that she gave when she visited Yale University in 1963. This lecture launched the development of Hospice care as it is known today.
The term “hospice” was first applied to specialized care for dying patients in 1967 by Saunders, who founded the first hospice — St. Christopher’s Hospice — in London.
Hospice & Palliative Care Associates began in the late 1970’s as a grass-roots movement of community members who saw people dying alone and afraid in the hospital. These visionaries wanted to offer people in their final months of life and their families the support they needed and to help patients live this time as fully as possible in comfort at home or a home-like setting, surrounded by family and friends.
Some of the first patients were admitted in 1981 into a program then known as The Caring Coalition. In 1985 the agency was approved by New York State as a provider of hospice services, certified by Medicare, and became known as the Hospice of Central New York. The number of patients receiving care steadily increased from 70 in 1985 to more than 978 in fiscal year 2003-2004.
In addition to providing home care, Hospice cares for people with acute needs in hospitals, nursing homes, Francis House in Syracuse and in senior housing environments.
Dr. Cruse J. Howe has been receiving Hospice care at St. Joseph’s Hospital in Syracuse for the last two weeks. He was hospitalized after experiencing congestive heart failure. His wife Dorothy thinks Hospice care is a unique service. The caring and dedicated Hospice staff impresses her. “Everyone has been phenomenal,” said Howe. Her husband’s nurse practitioner suggested receiving support from Hospice because Dr. Howe needed to stay in the hospital for an extended period of time. “It’s been a lifesaving thing for us,” remarked Dorothy.
Dorothy was familiar with Hospice care because her brother received it as he was dying in North Carolina. “I was familiar with the wonderful things that they do,” said Howe. She also did a lot of reading on the subject and attended a death and dying course at Onondaga Community College.
While under the care of Hospice, Howe has received spiritual support from David Pasinski, senior chaplain of Hospice & Palliative Care Associates. “He’s an absolute angel,” said Howe. “He’s very caring and supportive. David has been phenomenal. I feel peaceful about my husband’s illness. Hospice is a marvelous program.” Eventually, Howe hopes to move her husband to Francis House.
Pasinski has been involved with Hospice care for 11 years and believes that the service is a natural way to deal with dying and it is done in such a way that it makes one appreciate life. “It’s a beautiful, holistic way to deal with life until the patient dies, and it supports the family after their loss,” said Pasinski. He believes that Hospice care is beneficial because it gives the patient and family an opportunity to talk about difficult issues at that stage in their life, and it offers support.
Pasinski helps the patient and family in a number of ways. For those who wish to participate, he prays and reads Scriptures with them. Pasinski lets the patient and family discover and talk about their own spirituality and helps them identify what will help them on their journey.
Volunteers are an integral part of Hospice care. In 2004, 1,050 volunteers participated in the program. They are called “family caregivers” in the Hospice care organization because they are trained by Hospice staff to help the patient and family. Family caregivers attend a series of six weekly workshops called “Living with Dying.” They also take part in 18 hours of special training where they learn the skills they need. The training enables them to relieve the primary caregivers, do household chores and help bathe the patient. Possibly the most important skill is their ability to be good listeners.
Hospice caregivers and staff can often grant a patient’s last wish to make the end-of-life period a special time. Recently, Hospice chaplain Tom Murphy overheard patient Marilyn Stone express a wish to get married. The Hospice staff made arrangements for Stone to marry her companion. A wedding gown, veil, and long, pearl-studded gloves were donated, along with flowers, a cake and champagne to make the occasion special. She and her companion felt grateful after the ceremony. Stone died three weeks after her wedding.
Mary Tackman is a patient of Hospice whose quality of life has improved immensely since signing on in July. Her oncologist suggested that Tackman assess both Francis House and Hospice care. Tackman has been diagnosed with lung, liver and bone cancer. After examining the options, she elected to stay in her own home and receive Hospice care. “I’d rather be in my own home,” said Tackman.
Tackman is very pleased with the help she has received from Hospice. “I don’t know what I’d do without Hospice,” remarked Tackman. She tried other home care services before receiving Hospice but wasn’t happy with the care she received. Now she is very content with her home health care worker who helps her with bathing and dressing. “I’m eating well and people have told me that I look better,” said Tackman.
Tackman enjoys the personal interaction she receives from the various people that visit her from the Hospice organization. “I feel I’m being treated as a person, not as a 1:15 appointment,” said Tackman.
She has benefited greatly from the efforts of her family caregiver. The family caregiver takes her grocery shopping and brings her food that she has prepared for her own family. She also provides good company to Tackman. She is also visited weekly by a Hospice nurse.
Tackman thrives on the spiritual care she receives from senior chaplain David Pasinski and chaplain Rev. Tom Murphy. Tackman has a remarkably positive spirit. “When Dave and Tom come to visit, we pray, talk and laugh,” said Tackman. “Hospice is a very helpful and kind organization. They anticipate your needs.”
Rev. David C. Seaver has served as Hospice chaplain at Our Lady of Lourdes Hospital in Binghamton for 10 years. He thinks highly of the Hospice program. “It’s an awesome opportunity to meet people and help them in what may be the darkest hour of their life,” said Seaver.
He offers spiritual support when he visits the patient and family in their home. “The patient and family want my presence and prayers,” said Seaver. Before he visits, he calls each family member and patient. Then he sends each person a letter, letting him or her know that he is available for them and that he will pray for them. After that, Seaver offers to call the patient’s spiritual leader, with his/her permission. “I want to be the loving, caring channel to minister to people,” said Seaver.
Sister Mary Ellen Schopfer, CSJ, has been chaplain of Hospice & Palliative Care, Inc. in New Hartford since 1998. She thinks Hospice is a wonderful organization. “We really focus on the quality of life for the patients,” said Sister Mary Ellen. “We try to provide opportunities and encourage them to live life as fully as they can.” As an example, Sister Mary Ellen explained that if the Hospice staff knows that a patient is anticipating an upcoming wedding anniversary, they will make arrangements for the patient to celebrate it.
Through her interaction with Hospice patients, Sister Mary Ellen observed that the patients want to know if their lives have meaning. She assures them that they do have meaning as she listens to them tell their stories about their lives. Sister Mary Ellen also helps them to see that God is forgiving and she reassures them of His love.
Sister Mary Ellen also assists the patients and families when she prays with them, helping them to say good-bye. She also likes to sing with the patients. “It’s a way of getting the message across that God cares for them,” remarked Sister Mary Ellen.
Hospice & Palliative Care Associates’ Center for Living with Loss in Liverpool serves as an educational and counseling resource for the community in the areas of death, dying, bereavement support and adjustment to loss. The Rev. Paul A. Metzler, who is an Episcopal priest and professional counselor, is director of the center. He has worked at the center for 12 years and enjoys the environment. “I feel good helping people,” said Rev. Metzler. He likes Hospice’s humane and holistic approach of coping with grief. He considers the family as the patient — not just the person with the disease. “The patient is glad to know that the family will have what they need,” explained Rev. Metzler.
Hospice care offers an alternative to continued hospitalization and to attempts at curing the disease. With this alternative, care is focused upon physical comfort and emotional support. Hospice’s two primary goals are to help patients live life as fully as possible with their remaining time and to ease the trial of the patient’s family during and after this difficult period.