The Wolfson Palliative Care Program - Easing Pain at the End of Life - 05/04/2007
Alice Smith is doing everything she can to prepare herself for the inevitability of her son’s death. He is 48. His liver and kidneys have ceased to function, a result of chronic disease. Alice’s mind is racing with the details surrounding his death — obtaining legal guardianship of her teenage granddaughter, a funeral, cremation, the complicated family dynamics. David’s Aunt Kathryn reminisces at his bedside about what a sweet child he was and the fun they had before he got sick.
David was admitted to the hospital a week ago. His physician told Alice1 his liver and kidney damage was irreversible, but Alice held on to a slim hope. Two days ago, the doctor told her David’s death would come soon.
This is a nightmare, even for a woman who has already endured so much. She talks about where she will keep his ashes. “I can keep him close,” she says. That is one of the easier decisions. “I don’t want to start crying,” she says, trying to hold back the tears running down her face. Social worker Janice Vough, MSW, gently reminds her that she needs to cry and not keep her emotions bottled up.
The most difficult decision was whether to continue medical interventions, when all indications were that such interventions would not only be futile, but might increase David’s suffering.
Alice chose the path of least suffering. David is on “comfort measures only,” meaning he’ll have no further medical intervention to sustain his life; only comfort such as pain relief. He seems to be peacefully asleep, unaware of his surroundings. Aunt Kathryn leans over and talks to him gently now and then; keeping vigil, confident David can still hear her.
Rev. Will Baumgartner drifts in to pay his respects. The comfort of his presence is palpable.
Even in her grief, Alice praises the staff. “Every step of the way someone has been here. Everyone has been loving and caring, attentive and good,” and, referring to Janice Vough, Alice says, “She has been a God-send.”
Rev. Baumgartner and his colleague, Rev. Ron Smith, provide pastoral care — what you might call spiritual medicine. His job at the hospital, Rev. Baumgartner says, is “primarily to meet the spiritual and emotional needs of patients. But that is not unique to pastoral care people.” What is more unique to pastoral care, he says, is that “we speak of inward healing and spiritual healing and wholeness.”
Death may be inevitable, but guiding the end-of-life process with knowledge and sensitivity, especially in serious and terminal illnesses, makes all the difference for the dying and their loved ones.
“A good death,” says Cynthia Kociszewski, PhD, APRN, manager of the Wolfson Palliative Care Program at The Hospital of Central Connecticut, “is different for each dying person. The priority for most people is to be free of distressing physical symptoms. The source of physical symptoms can be physiological or the manifestation of psychosocial or spiritual issues.”
It sounds so simple. And yet, when complex medical needs and dynamic family relationships collide with the threat of death, it rarely is.
“The better healthcare providers can understand the person behind the illness — who they are, what is important in their life, what traditions or spiritual practices are meaningful to them — the better we can support people and their families by respecting their wishes for care,” explains Dr. Kociszewski. “But a good death must also adhere to the clinical, cultural, and ethical standards of care that healthcare professionals ascribe to.”
Wolfson Palliative Care
The Wolfson Palliative Care staff, together with the patient’s physician, and the Pastoral Care and Social Work departments, form the core of the interdisciplinary care team that provides comfort, compassion, support, and knowledge when a person’s illness causes distressing symptoms or debilitation that are no longer responsive to traditional medical therapies. Physical symptoms can include everything from pain, nausea, and respiratory problems, to anxiety, insomnia, and skin rashes.
Team members work closely together to understand the patient’s illness holistically, with each contributing expertise and insight into how best to assist patients and their families.
Stephen H. Grund, MD, PhD, is the medical director for the Wolfson program and the George Bray Cancer Center. Dr. Kociszewski and Deborah Ferretti, APRN, are Wolfson’s fulltime staff members. Kociszewski is board certified as an acute-care nurse practitioner and an advanced practice nurse in hospice and palliative care; Ferretti is board certified as a clinical nurse specialist in wound and ostomy care.
But they work closely with attending physicians, social workers, care coordinators, and the Hospital’s two pastors, Smith and Baumgartner. The care coordinators, says Dr. Kociszewski, are “invaluable.” If a patient is being discharged to the home or community setting for palliative and or hospice services, care coordinators have the expertise and compassion to work with patients and families to create a well-organized discharge plan.
“One role of a critical care unit, not frequently recognized, is to determine when patients can’t survive,” says Dr. Michael McNamee, director of pulmonary and critical care medicine. “We communicate that in a compassionate way, but the palliative care service helps a lot in that process. Their team can take time to fully discuss all the issues with the patient and family.”
Dr. Madura Saravanan, associate director of the hospitalist service, and hospitalist Dr. Daniel Lehnhoff agree the palliative care program is invaluable. “We give the patients and families the big picture. The palliative care service can involve themselves much more deeply with all aspects of care,” Dr. Saravanan says.
Palliative Care and Hospice Care
Palliative care and hospice care are often confused. Hospice care is a holistic approach to care for terminally-ill people, “whose stated goals of care are guided by optimizing the person’s physical, psychological, and spiritual comfort,” Dr. Kociszewski explains.
Palliative care is also a holistic approach — not just for people at the end of life, but also for those with chronic, progressive, life-limiting illnesses such as end-stage kidney, heart, lung, neurological, or immuno-logic disease. In these cases, Dr. Kociszewski explains, patients can continue to receive medical treatment as well as “aggressive symptom management. ” There is often much care that can be given, but no cure.”
A recent study published in The New England Journal of Medicine found that specific interventions with families of dying patients can have a significant impact — reducing grief, length of bereavement, incidence of Post Traumatic Stress Disorder, and need for their own mental health care.
“At a time when a family is emotionally devastated and least able to deal with it, there is a crush of incredibly complex information to absorb,” says Diane DeFronzo, MSW, oncology social worker, who frequently works with the palliative care service. “It is crucial to have a coordinated team of professionals to help.”
One Patient, Many Lives
One terminally ill patient often means many lives to care for — spouses, children, grandchildren, and friends. The end of life issues are many, and frequently come into conflict. Pain management is often a delicate balancing act — as with a patient who wants to be free of pain and also remain lucid. Dr. Kociszewski often finds herself in the center of these medical maelstroms, holding everything together — keeping tabs on specialists and caregivers, tests and results, medications, other treatments and their effectiveness.
A daughter whose father was recently cared for on the C5 unit says that understanding the constantly changing information, in addition to their own grief, was “overwhelming.” “Cindy was amazing… putting all the pieces together,” Judith2 says.
At a meeting with Dr. Kociszewski, this family discussed what their dad wanted and came to the unavoidable conclusion that it was time for comfort measures only.
“Dad told us he did not want to be in pain,” Judith continues. “He was ready for the next step, but we weren’t.”
But with their family meetings, the reality was faced and decisions could be made. The family prepared. Everyone had the chance to say good-bye. For all of their grief, relatives say this is how the end of life in a hospital should be handled. “The staff seemed to anticipate every need, every question, at just the right time.”
Families praise C5 Manager Lorry Killeen, RN, and virtually everyone else they have contact with, from nurses to housekeeping staff. “They are all truly compassionate, so kind, and competent. They were respectful and treated Dad with such dignity and care. They made us feel at home here,” another family member says.
“One of the most useful things I can do is to listen,” social worker DeFronzo says. DeFronzo explains that her job overlaps several others. She ministers to patients’ and families’ emotional needs, but also helps facilitate communication wherever needed. “Very often, patients will be protective of their family members. They don’t want to tell them how bad the pain is or to see them cry. But with a compassionate stranger, these patients can cry.
“You know that you’re helping people,” she continues. “How many people can say that (about their work) — that they make a difference in other people’s lives?”
“They created a sacred space for our dad,” says Judith. “If you have to be at the end of life with someone, this is where you would want to be.”
Dr. Samuel Wolfson’s Legacy
The Wolfson Palliative Care Program began at the former New Britain General Hospital in 1998 through a multi-million dollar gift from Samuel Wolfson, MD, former chief of anesthesiology. Dr. Wolfson wanted to alleviate the pain and suffering associated with illness and dying.
By 2000, the Wolfson Palliative Care Program was providing direct inpatient care and family support and other services.
The idea for the program sprang from Dr. Wolfson’s expressed desire to help others.
Barbara Davidson got to know Dr. Wolfson when she was volunteering and he was hospitalized on C5 for a month. “He had no family and was close to few people,” Davidson explains. “He put everything into his work at the hospital until he became sick. So I would go by and see him once in a while. Once I brought him homemade matzo ball soup on one of the Jewish holidays. It was a small thing, but it made him very happy.
“When he took a turn for the worse, I went to ICU. They told me he wouldn’t know if I was there. But he knew. I held his hand and he died within five minutes,” Davidson says.
Unbeknownst to Davidson at the time, Dr. Wolfson, in his will, put her in charge of a $6 million bequest to the hospital. (The largest single gift the hospital had ever received.)
So Barbara Davidson found herself charged with starting the palliative care program that now bears Dr. Wolfson’s name. “I can’t say enough about this program, its people, and the things they do for patients. Dr. Wolfson would have been so happy.”