Twenty-one healthcare organizations, including eight hospitals, have been awarded a total of $9.1 million in grants to improve the quality of life of terminally ill patients.
The Robert Wood Johnson Foundation, a Princeton, N.J.-based healthcare philanthropy, awarded the grants late last month under its "Promoting Excellence in End-of-Life Care" program (See box).
Each of the grant recipients, chosen from a pool of 678 applicants, will receive about $450,000 over three years to support their programs to remove administrative and social barriers in providing palliative and hospice care.
Palliative medicine now focuses its attention on cancer and AIDS patients, although many other patient groups can benefit from such care, the foundation says.
"We know that people who are dying of a number of non-cancer diagnoses are having difficulty receiving hospice care or are getting it very late," said Ira Byock, M.D., director of the grant program. "They may never be referred to hospice despite their serious disability."
The various end-of-life care programs reach a diverse range of terminally ill patients, including the indigent, those receiving dialysis, the mentally ill, women in prison, veterans and children.
For example, the Balm of Gilead program at 130-bed Cooper Green Hospital in Birmingham, Ala., cares mostly for inner-city indigents who have no family to care for them. Because of the hospital's high population of African-American patients, the program was named after an African-American folk song that includes the lyrics: "There is a Balm of Gilead to make the wounded whole."
The program created a 10-bed hospice center within Cooper Green Hospital for patients who don't have adequate caretakers at home. The Balm of Gilead Center began accepting patients Nov. 2. The facility's rooms have home-like amenities, such as easy chairs, armoires for patients to store personal belongings, televisions and VCRs, and comforters on the beds. The section also has a living room for patients to gather when they are well enough to leave their rooms.
In addition to the inpatient hospice center, the program will develop volunteer care teams in the community to visit and help patients with nonmedical assistance, and to form an extended family around those who don't have family or adequate family support. Also, in conjunction with the University of Alabama at Birmingham, a curriculum will be developed to teach medical students how to better focus on comfort, issues of life completion and closure, and quality of life. The hospital also will offer home-based hospice care for the terminally ill regardless of their ability to pay.
"Our overall mission is to improve quality of life and end of life," said Amos Bailey, the hospital's medical director. "Our second goal is that we want palliative care and hospice care to precede the last two weeks of life. We feel people are sick for the last one or two years. Much of the philosophy of palliative care would help improve quality of care for people who still have a few years to live."
Another grant recipient, the Renal Palliative Care Initiative at 660-bed Baystate Medical Center in Springfield, Mass., brings palliative care to patients with terminal kidney problems.
"We're somewhat unique in terms of focusing on this patient population," said Lewis Cohen, M.D., director of the program. "We're ringing the bell and saying that there's an enormous number of people with renal failure who deserve this attention."
The initiative, which began Oct. 1, will educate staff about end-of-life issues, survey families about their perspectives on a loved one's death, and hold memorial meetings to honor each patient who dies.
Baystate implemented the palliative-care initiative at eight of its 10 dialysis clinics. The other two clinics will be used as controls to compare outcomes of the program on patients' quality of life.
Another project at the Massachusetts Department of Mental Health Metro Suburban Area, based in Medfield, will bring palliative-care issues to an even more specialized population: patients with terminal illnesses who also suffer from mental illnesses.
"Life-limiting illnesses in this population are not identified early enough for patients to be put into services such as hospices," said Sally Neylan Okun, who is project director of the organization's Promoting Excellence in End-of-Life Care for Persons with Mental Illness program. "At the same time, hospices are not ready to take on the needs of this special population because of their mental illness."
The program will partner with two hospices in the area to develop training modules that will be used to educate hospice personnel on mental health issues and to educate mental health staff on hospice issues.
The project also will develop a questionnaire to determine the preferences of patients in their end-of-life care, a competency assessment tool to identify the ability of mental-illness patients to make healthcare choices, and an outcomes evaluation to measure how the interventions have affected patients.
"Our overall goal is to identify patients' preferences about end-of-life care before the need arises," Okun said.