Carolyn Vachani, MSN, RN, AOCN
Last Modified: May 21, 2002
In June of 2000, the Institute of Medicine issued a report addressing barriers to palliative care in the United States. From this report came a mandate for improvements in palliative care. A presentation at the ASCO annual meeting addressed the collaborative response from the American Society of Clinical Oncology (ASCO) and the Oncology Nursing Society (ONS). Presenting the collaborative plans were Ronald Blum, MD, Betty Ferrell, PhD, City of Hope National Medical Center, Neil MacDonald, MD, Clinical Research Institute of Montreal, and Kathleen Shedlock, MS, MPA, chairperson of the ONS ethics committee.
In order to understand the barriers to palliative care, one must have an accurate definition of palliative care. The World Health Organization defines palliative care as the active total care of patients whose disease is not responsive to curative treatment. Control of pain, other symptoms, and psychological, social and spiritual problems is paramount. The goal of palliative care is achievement of the best possible quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness, in conjunction with anticancer treatment. Palliative care: affirms life and regards dying as a normal process; neither hastens nor postpones death; provides relief from pain and other distressing symptoms; integrates the psychological and spiritual aspects of patient care; offers a support system to help patients live as actively as possible until death; and offers a support system to help the family cope during the patient's illness and in their own bereavement. Radiotherapy, chemotherapy and surgery have a place in palliative care, provided that the symptomatic benefits of treatment clearly outweigh the disadvantages. Investigative procedures are kept to a minimum.
Unfortunately, end of life care is often introduced too late to be effective for patients and their families. Only 17% of dying patients were cared for by hospices in 1995. A Gallup survey in 1996 found that 90% of Americans would prefer to die at home, yet nearly 80% die in institutions.
In researching the scope of the problem, the 50 leading nursing textbooks used by nursing schools were reviewed. Only 2% of content, and 1.4% of the 1750 chapters contained information related to end of life care. A review of textbooks used by medical schools found, similarly, only 2% of the content related to end of life care. The ONS conducted a study of 2300 practicing nurses, asking what dilemmas they faced regarding end of life care. The responses included: use of advance directives, preserving patient choice, uncertainty about prognosis, causing death by giving pain medication, and withdrawing/withholding IV fluids. The study also looked at barriers to appropriate end of life care. These included: managed care, lack of continuity, family discomfort with death, and professional discomfort with death.
A study entitled ?Decisions and Outcomes of Palliative Surgery? is addressing surgeons? difficulties in providing palliative care to patients. The study estimates that 21% of all cancer surgeries are considered palliative. One physician stated that the biggest difficulty is providing honest information without destroying hope and preserving patient choice. The findings of the ASCO and ONS investigations found a need for improved education for both medical and nursing professionals. The groups feel that optimal end of life care would be best achieved through a collaborative and interdisciplinary practice. The program presenters pointed out that both the nursing and medicine code of ethics refer to collaborating with other disciplines.
These findings have lead to the development of several programs. The End of Life Nursing Education Consortium Project (ELNEC) is a comprehensive, national education program to improve end-of-life care by nurses, and is funded by a major grant from The Robert Wood Johnson Foundation. Primary project goals are to develop a core of expert nursing educators and to coordinate national nursing education efforts in end-of-life care. In addition, a 2 1/2 year series on palliative care is ongoing in the American Journal of Nursing, which reaches 350,000 nurses. The Education for Physicians on End of Life Care (EPEC) program was launched in 1998, through the Northwestern University School of Medicine. EPEC is also supported by a grant from The Robert Wood Johnson Foundation, and is designed to educate all physicians on the essential clinical competencies required to provide quality end-of-life care.
The ASCO and ONS response to the IOM also includes a model for collaborative practice. In this collaboration, the physician completes the history & physical, review of systems, and exam, with the nurse being responsible for evaluating the response to illness, psychosocial aspects, support system, and the impact on the patient?s role. The traditionally differing perspectives of nursing and medicine naturally allow for a balance of care. Studies analyzing collaborative practice have found improved quality of care, increased patient satisfaction, and improved long term grief of families, when they are included. Collaboration has benefits for the healthcare providers, as well. In a strong collaborative practice there is increased job satisfaction, improved self care (by setting and communicating realistic goals and having a life outside of work), and ethical crises may be prevented through a collaborative plan of care. The groups define collaboration to include: mutual care planning, respect for one another, open conflict management, role and professional responsibilities met, maintaining professional competence, members available and responsive to each other, being fair, truthful, open to constructive criticism and change, being free of bias, trusting each other, and being comfortable with flexible team leadership. This model can be implemented in interdisciplinary rounds, protocols or pathways, joint educational endeavors, family meetings, and through a focus on patient/family goals and values.
The National Cancer Institute plans to develop it?s own response to the IOM at an upcoming July meeting. Funding for palliative care research made up only 0.9% of the 1999 NCI research budget. If palliative care is to improve, this will need to change. The NCI has provided funding to the City of Hope National Medical Center for the Disseminating End of Life Education to Cancer Centers (DELEtCC) program. The primary aim of DELEtCC is to prepare clinical leaders with the information and resources to assure high-quality end-of-life care for cancer patients. Interdisciplinary two person teams, made up of physicians, nurses, social workers or other professionals from 300 cancer treatment centers will be selected, from submitted applications, to attend one of four annual courses. The programs mentioned are a great start, but will need continued funding and support to become standard. ASCO and ONS have committed to improving palliative care throughout the United States, and we are sure to hear more about this topic in the coming years.
Oncolink's ASCO Coverage made possible by an unrestricted Educational Grant from Bristol-Myers Squibb Oncology.