Current Issue: Fall 2011
Learning About Dying
In some sessions, Doctoring 101 brings patients and family members to speak to medical students about complex topics beyond the basic and physical sciences. One such topic: hospice..
By Jennifer Baldino Bonett
Married for 27 years, Robert J. Rossheim and his wife Diane lived "a great romance." It was the second marriage for both. When the country boy wed the city girl, the couple enjoyed each other's avocations – sailing for him and opera for her – and an active social life with friends.
Mr. Rossheim was diagnosed with thyroid cancer in 2006 at age 81, and the couple remained active long into his illness. They had led a good life together and, when it was clear that Mr. Rossheim’s condition was terminal, the couple wanted a “good death” for him as well. Working with their physician, they sought out Penn Home Care and Hospice Services.
“I think he died in peace,” said Diane F. Rossheim, a 1952 Penn graduate. “The time that he had was good time and he knew that.”
Speaking clearly and quietly to a class of first-year medical students, Rossheim unfolded the story of her husband’s passing in 2010 and their hospice experience, which was, she said, “a blessing.” The students sat in rapt attention, listening carefully and respectfully as their guest speaker expressed both grief and the joy.
They had come together to talk about hospice care in Doctoring 101, a class unlike any others the students would be taking during their education. Required over three years, Doctoring 101 covers complex topics beyond the basic and physical sciences, such as giving difficult news, handling an angry patient, and working with patients and families during terminal illness.
"Hospice isn't a death sentence. It's about getting most out of life. But in many cases, people don't understand what hospice is. Hospice should be one of the options offered to patients and families."
“This course gives our students a unique experience and exposure to areas of patient care and practice that aren’t encountered elsewhere in medical school,” said Paul N. Lanken, M.D., G.M.E. ’77, a critical care specialist, professor of medicine, and associate dean for professionalism and humanism. “They are dealing with difficult topics in a comfortable setting among faculty preceptors and student colleagues. For medical students preparing to heal and cure and save lives, learning about death and dying is an important part of their education.”
Hearing the Rossheims’ story is a particular privilege and teaching moment, said preceptor Leslie S. Kersun, M.D., M.S.C.E. ’04, an assistant professor of pediatrics and inpatient medical director in the oncology division at the Children’s Hospital of Philadelphia.
“Medical students haven’t really had much patient interaction at this point, so they are grateful to have these in-class interactions before doing it on their own,” explained Kersun. “The students develop an appreciation not just for the medical aspects of the disease, but for what the parent or mother or spouse has to do or might encounter in the medical system.”
Real patients and family members like Diane Rossheim speak to small groups of students in Doctoring 101. Although Rossheim remained stoic throughout the two-hour class, her voice conveyed tenderness and urgency as she talked about her husband’s illness and death. Mr. Rossheim went from using a cane to using a walker, and he continued to sail as long as someone was able to lift him into the boat. He would walk “as far as he could” through Washington Square, near their Philadelphia home. In October 2009, after Mr. Rossheim told his wife he did not want any more medical treatment, David Mintzer, M.D., a physician at Pennsylvania Hospital, “immediately wrote a prescription for hospice.”
Hospice focuses on palliative care – the lessening of symptoms and pain rather than cure – for terminally ill patients, who typically have a prognosis of six months or less to live. The hospice team – physicians, nurses, social workers, chaplains, home health aides, therapists, dietitians, and bereavement counselors – provides care that is physical, emotional, spiritual and social to the patient and the family.
Penn Hospice is one of only a few hospice services in the country to be affiliated with an academic medical center. “An academic medical center is the ideal home for a hospice program, since this partnership ensures that patients have access to both the most advanced treatment and the most compassionate care,” said David Casarett, M.D., G.M.E. ’99, the chief medical officer of Penn-Wissahickon Hospice. Patients and their families can receive care at home or as inpatients at Penn Hospice at Rittenhouse.
For the Rossheims, Penn Hospice provided at-home services including pain and symptom management, spiritual support, 24-hour on-call support, and home health aides to help with bathing. “There was always someone available to help us with a situation,” says Rossheim. “There were always solutions.” For example, she recalled social worker Mary DeVito. DeVito set up the Rossheims’ bathroom with safety bars, arranged the hospital bed with an inviting quilt, and arranged for a special foam mattress as Mr. Rossheim lost weight and needed more comfort. As he moved into his final days, the Hospice team left a morphine kit in the refrigerator and a special phone line for immediate care.
Rossheim read aloud to the medical students from “Letting Go,” a 2010 New Yorker article by Boston surgeon Atul Gawande:
“In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now — by performing surgery, providing chemotherapy, putting you in intensive care — for the chance of gaining time later. Hospice deploys nurses, doctors, and social workers to help people with a fatal illness have the fullest possible lives right now. That means focusing on objectives like freedom from pain and discomfort, or maintaining mental awareness for as long as possible, or getting out with family once in a while. Hospice and palliative-care specialists aren’t much concerned about whether that makes people’s lives longer or shorter.”
"An academic medical center is the ideal home for a hospice program, since this partnership ensures that patients have access to both the most advanced treatment and the most compassionate care."
Rossheim also showed a photographs of her husband, from healthier times, standing aboard a sailboat. She told the students that at the end of his life, hospice enabled her beloved Bob to take pleasure in his days. “Each department at the hospice was so helpful to us,” she recalled. “Everything is for the comfort of the patient.”
There is also comfort for the caregiver and the family, including respite services during care and bereavement services for up to 13 months following a patient’s death.
Joining Rossheim in Doctoring 101 was Jeffrey Barg, M.S.S., L.S.W., bereavement coordinator for Penn Hospice. “Hospice isn’t a death sentence. It’s about getting the most out of life,” he said. “But in many cases, people don’t understand what hospice is. Hospice should be one of the options offered to patients and families.”
Barg encouraged the students to “push yourselves to talk to patients about hospice. Being realistic about it in a sensitive way is the greatest service to patients. It is a difficult subject to broach and it is easy to fall into a do-everything-at-all-costs mentality. Give patients the information they need and want to make good decisions.”
As the two-hour class wound down in Stemmler Hall, students asked how Mr. Rossheim transitioned from seeking a cure to realizing the disease would take his life and seeking hospice care. “Bob was very aware of hospice and knew he had an incurable disease,” said his wife candidly. “He really knew his end was coming and he accepted it. He had a quiet, contemplative demeanor and wanted to have as much pleasure at the end of his life as possible. There comes a time when then medicine has to stop. Bob understood that.”
To learn more about Penn Home Care and Hospice, visit http://www.pennmedicine.org/homecare/ or call 1-866-888-8598.