Comfort from Day One
The need for pain relief and comfort often begins the moment a patient learns he or she has cancer.
"Palliative care starts when you show up at Dana-Farber," says Abrahm, a hematologist/oncologist by training who joined the Institute in early 2001 to lead its program. "People often suffer at diagnosis with a 'Why me?' existential crisis. They may also have a social crisis in terms of their roles at home, on the job, or in the community. There can be physical distress as well. So palliative care is important at the beginning, but it is also needed later if a patient relapses or is nearing the end of life."
A patient's oncology team routinely delivers pain medications and other forms of comfort care. But the palliative-care group can offer additional expertise to help a patient overcome extreme nausea, discuss what life might be like without chemotherapy, or explore the benefits of hospice care, for example. They do so in person or by phone, and at the request of physicians or patients themselves.
The Pediatric Advanced Care Team (PACT) emerged in 1997 after a study by DFCI and Children's Hospital Boston revealed that children with advanced cancer can benefit from palliative care to ease their pain. The team, headed by Joanne Wolfe, MD, MPH, now counts five full- and part-time staff (and other nonpaid members) and serves young patients at Children's with cancer and other illnesses. Research shows that the program is effective in reducing suffering among children and helping parents prepare for their child's death.
Dana-Farber nurses Maureen Lynch (left) and Mary Jane Ott are critical members of the palliative-care team.
On the adult side, the Institute expanded its symptom-management service into a comprehensive palliative-care consultation program in 2001. Since then, its leaders have sought to create a "continuum of care" that supports patients and families in the clinic, the hospital, or at home — the latter thanks to DFCI's newly acquired hospice program. The group is also working to enhance its bereavement services for those in grief.
Among the team's core members is Mary Jane Ott, MN, MA, RNCS, a psychosocial clinical nurse specialist who uses mind-body techniques such as guided imagery and yoga to help patients relax and focus on what they're going through. "Everyone, when they are diagnosed, is shocked and overwhelmed," she reflects. "My goal has always been to empower the patient as much as possible."
Ott and other palliative-care staff often go above and beyond for their patients. Take, for example, the wedding that the team — led by palliative-care fellow Lauren Dias, MD — recently arranged at Brigham and Women's Hospital for a patient who was about to enter hospice care.
"Jim and I were going to get married but didn't know when," said Judy Papachristos of Acton, Mass. "The team got the marriage license for us, and before I knew it, they had everything planned." The ceremony, officiated by BWH Staff Chaplain Katherine Mitchell, took place in November with caregivers from both hospitals, social worker Meghan Lemery, and family members and friends attending. There was even a wedding cake provided by the BWH kitchen, silk flowers, and a guest book. "It was absolutely wonderful," recalled Papachristos.
In another example of enhancing quality of life, palliative-care experts from Dana-Farber and Children's helped enable a New Hampshire teenager to spend her last month in the "comfort corner," a special room at Children's that allows families to remain together at life's end.
Mary Coffin, who lived with a brain tumor for eight of her 16 years, shared the cozy space with her parents and older sister for a month until her death in mid-November. She welcomed a steady stream of friends, as well as regular visits from her oncologists, nurses, and members of the PACT team to address her pain and other concerns.
"Mary wanted to be home, and we told her this was home because we were all together," says her father, Kerry Coffin. "It made our family closer, and I will always treasure that." Her mother, Wanda, adds, "It was such a gift for us to be with Mary for that time. We were all there when she died and said a prayer together. It was very peaceful."
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