Changing the Paradigm of Care for Dying Patients

TON - June 2011, Vol 4, No 4 — May 13, 2011

BOSTON—Where most people see the end of life for a patient with cancer as a time of grief and suffering, “the final chapter…also holds the opportunity for profound healing, comfort, and growth,” believes Betty Ferrell, PhD, RN, who was honored with the Mara Mogensen Flaherty Memorial Lectureship Award. She further believes that, through compassionate and competent psychical and psychosocial care, oncology nurses can be instrumental in brightening the darkest days for patients.

The modern hospice movement took root in the 1970s and it continues to evolve and spread, said Ferrell, who is a nursing research scientist with the City of Hope Comprehensive Cancer Center in Duarte, California. Although nursing practices vary according to a region’s resources and customs, Ferrell said she has come to recognize common elements in all nursing efforts to relieve the burden on patients in the later stages of life (Table).

Ferrell said she made these observations during 34 years of oncology nursing experience and through her involvement in the End of Life Nursing Consortium (ELNEC) project. The launch of ELNEC’s palliative care training program in 2001 has brought her together with oncology nurses from all 50 states and 69 countries. “From Japan to Tajikistan, from Kenya to Russia, Romania to South Korea, nurses around the globe are improving the care of cancer patients at the end of life.”

Oncology is largely focused on curing disease or prolonging cancer. Meeting the psychosocial needs of those patients who are beyond saving requires challenging this paradigm, said Ferrell. She cited nurses in Veterans Affairs (VA) hospitals as an example of individuals challenging the way their institutions handle death. VA hospitals have progressed from quickly, silently, and secretly moving the dead from their beds to the morgue to announcing each veteran’s death over the hospital’s audio system and inviting visitors and other patients to “join in the recognition of a life ending.” Each veteran is draped in a US flag and saluted as his of her body is escorted in dignity to the morgue. As part of its effort to transform how death is viewed, the VA also has expanded its commitment to educating its nursing staff on palliative care through the ELNEC project.

Despite the increased attention to palliative care concerns over the decades, Ferrell said her research has identified several areas where it consistently falls short, including the relief of physical symptoms and help for psychosocial concerns such as anxiety, depression, distress, and uncertainty. Multidisciplinary teams need to adopt aggressive strategies for preventing and alleviating symptoms in patients with cancer and to screen patients for psychosocial issues, rather than waiting to respond when they escalate to a crisis.

One of the most important steps to being a skilled provider of palliative care is showing up. Many patients and families crave the presence of another person as they deal with their grief, and the nurse’s presence is comforting even if she is unable to provide direct relief of the patient’s suffering. Ferrell said in today’s culture of “technology-driven healthcare,” death is viewed as a physiologic experience that represents failure. Nurses must continue to change this paradigm for patients with cancer and work to “create an alternate vision that the end of life is a spiritual experience,” said Ferrell.

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