News From the End of Life

VA picks care sites for end-of-life project

The Department of Veterans Affairs (VA) has selected six health care sites to launch its new program focused on changing the way physicians, social workers, nurses, and other caregivers approach end-of-life care.

The initiative, called "VA Interprofessional Fellowship Program in Palliative Care," will foster the development of health care professionals with vision, knowledge, and compassion to lead end-of-life care into the 21st century. Although aimed at improving care for veterans, the program will affect how palliative care in medical circles is provided throughout the country.

The following VA health care sites were selected from among 21 that applied: Bronx, NY; Los Angeles; Milwaukee; Palo Alto, CA; Portland, OR; and San Antonio.

Each site will have four one-year fellowships or equivalent part-time positions. Palo Alto will serve as the hub site and will be responsible for coordinating curriculum, program evaluation, educational outreach, and recruitment strategies.

"This program is one of the most important developments in the field of palliative care," says Susan Block, MD, chief of adult psychosocial oncology at the Dana Farber Cancer Institute at Harvard Medical School and Brigham and Women’s Hospital in Boston. "The fellowships will train a cadre of expert clinicians who will serve as beacons for others interested in improving care at the end of life throughout VA and the country."

The new fellowship program has a large educational component. Trained clinicians are expected to serve as leaders promoting development and research. Selected training sites will be required to develop and implement an "Education Dissemination Project" to spread information beyond the training site through conferences, curricula for training programs, patient education materials, and clinical demonstration projects.

As resident doctors go out into the community, they take their training with them. More than 130 VA facilities have affiliations with 107 medical schools and 1,200 other schools across the country. More than half the physicians practicing in the United States have received part of their professional education in the VA health care system.

"There comes a time when all the modern medicine in the world can’t cure the illness. That’s when treating the pain, communicating with compassion, and providing support and counseling become paramount. And that’s what these fellowships are all about," says Stephanie Pincus, MD, VA chief officer for Academic Affiliations.

New book documents dying first-hand

Living with a terminal illness and caring for someone who is dying is difficult. But a new book, Few Months to Live: Different Paths to Life’s End, focuses on the endurance of the human spirit at the end of life.

The book is the result of a study conducted by the Missoula Demonstration Project. Authors Jana Staton, Roger Shuy, PhD, and Ira Byock, MD, offer a glimpse of the lived experiences of everyday people who faced life’s end, experiences captured in the words of patients and families who have gone through the dying process and who agreed to be study participants.

Staton is the author of "Listening to Families," an ethnographic series of 11 videotapes and study guides for personnel working with families who have very young children with disabilities. Shuy is author of Bureaucratic Language of Government and Business and is Distinguished Research Professor of Linguistics Emeritus at Georgetown University in Washington, DC. Byock, a research professor in the department of philosophy at the University of Montana in Missoula, is cofounder and principal investigator of the Missoula Demonstration Project and is the author of Dying Well: Peace and Possibilities at the End of Life.

In the book, the authors introduce readers to Dennis, a young man suffering from a rare form of cancer, and his mother, Carrie. "It seems we are just chasing fires, stamping out fires," Carrie says of her days alone managing Dennis’ care. "Just eating, pain control, and sponging. That’s it." The vignette includes a 60-mile trip with Dennis and Carrie as they make their weekly drive from their rural home to Missoula where Dennis receives treatment, including pain control, which is complicated by Dennis’ insistence on maintaining his coherence.

The authors allow the words of all of these people to illustrate how dying people communicate, describe how or if they plan for the inevitable, recall what their doctors and nurses said to them, and describe how they understand their illnesses.

But it is the two chapters on caregiving that bring home one of the book’s major findings: Informal caregiving by relatives and close friends is an enormous, often overwhelming, months-long task that society neither properly recognizes nor supports. "Caregivers finished their work exhausted and deprived of any social life or activities outside the home," the authors write. "Some felt guilty for not having done their jobs even better."

Despite these realities, the authors also showed how caregivers persevered. "I decided some months ago that we just couldn’t leave her alone anymore," says one caregiver who cared for her sister.

Canadian Pain Society launches manifesto’

In July the Canadian Pain Society released the Patient Pain Manifesto in hopes of raising public awareness about pain management rights.

"The Patient Pain Manifesto was developed by the Canadian Pain Society [CPS] as a Bill of Rights’ to clearly communicate to hospital patients and their families their rights regarding treatment of pain resulting from surgery, treatments, or illness," says Celeste Johnston, MD, president of CPS and professor in the School of Nursing at McGill University in Montreal.

"Studies show that a surprising number of patients believe that suffering is part of being in hospital and being ill," Johnston notes. "We want to make sure that patients with pain are fully aware that they have the right to receive treatment that will keep their pain under control and help them reclaim their lives."

Viewing pain as a treatable condition

Awareness and education are of primary importance in pain management. Patients need to know pain is a medical condition that can — and should — be treated, just as infection, diabetes, or high blood pressure are treatable, says Johnston.

Health professionals can’t treat a patient’s pain until the patient or his or her family reports the type and level of pain. The CPS Patient Pain Manifesto gives them a tool for doing this. Health professionals then have a responsibility to assess pain routinely, to believe the patients’ pain reports, and to help prevent the pain, the CPS maintains.

Goals for the future of this national educational and awareness initiative by the Canadian Pain Society include:

• Ensure adequate education of medical and nursing students during their training.

• Provide more continuing education opportunities to health care professionals on the assessment and management of pain.

• Work more closely with patients to determine areas of need.

• Work more closely with industry to market educational materials.

• Distribute 1,000,000 bookmarks to patients, their families, and health professionals.

• Distribute 10,000 posters to health care professionals and clinics.

Alzheimer’s caregivers face a grim outlook: Study

A five-year study of Alzheimer’s patients and their families show that caregivers are more likely to be hospitalized and are three times more likely to become clinically depressed than others in their age group. Elderly spouses who are caregivers are 63% more likely to die than other spouses of the same age.

Results of The Dementia Care Project were released to a group of geriatric and health care professionals in July by Kaiser Permanente and the Alzheimer’s Association Los Angeles. The results highlighted the importance of physician guidelines, early diagnosis, a case management model, and caregiver support.

Alzheimer’s Association surveys indicate that 19 million Americans say they have a family member with the disease. The Alzheimer’s Association Los Angeles and Kaiser Permanente developed guidelines for the diagnosis of Alzheimer’s disease. They later adopted post-diagnostic care guidelines, trained primary care providers and social workers in dementia care, and hired and trained two Kaiser Permanente care managers to work specifically with dementia families and their physicians.