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Maine
Assessing Quality of Life at the End of Life in Maine Veterans' Homes
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Public Health Problem
In 2002, Last Acts, a national coalition to improve care and caring near the end of life, published Means to a Better End: A Report on Dying in America Today. This document rates each of the 50 states and the District of Columbia on eight criteria as a basis for assessing Maine�s end-of-life care. The criteria included (1) advanced care planning, (2) dying at home, (3) use of hospice care, (4) hospital-based palliative care services, (5) over-aggressive care, (6) pain management in nursing homes, (7) pain management policies, and (8) availability of trained palliative care staff. Maine received a "D" or lower rating in four of those eight areas, indicating that there is significant room for improvement in end-of-life care in Maine.
Improving quality of life (QOL) is recognized as an important goal of palliative care.1,2 Thus, QOL assessment has become an important measure for clinical care planning and for programmatic quality improvement.3 Studies have suggested that QOL could be the most appropriate outcome measure of terminal care because it focuses on what happens to the patient, measuring the effect of physiological change (such as pain reduction that enables greater freedom of ambulation) rather than only the fact of physiological change.
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Program Example
In 2003, the Maine Comprehensive Cancer Control Program, in conjunction with the Maine Hospice Council and the Maine Veterans' Homes (MVH), assessed the end-of-life care in MVH facilities relative to existing national data and palliative care standards. Retrospective chart audits were conducted at MVH facilities in which residents died with cancer diagnoses between 2000 and 2003. A standardized data collection instrument was used to assess indicators of QOL, including resident demographic information, diagnosis, family issues, site of death, symptom management, and palliative care. Residents' wishes relating to "Do Not Resuscitate" orders were consistently respected. Invasive-type treatment was found in the last weeks of life in 35% of cases reviewed. Up to 67% of the study population reported experiencing some pain. Opioids for pain management were given to 87% of residents in the last 48 hours of life. Documentation of the religious and spiritual preferences of MVH residents was lacking overall. The number of documented clergy visits was low. Only 14% of the total resident population reviewed were referred to local hospice programs.
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Implication and Impact
The results show that there is much room for improvement in Maine for pain management, advanced directive/advanced care planning, clergy visitations, documentation of patient religious and spiritual preferences, and increased use of community-based hospice programs. Staff education and training in pain management, end-of-life care, and documentation of patient needs and preferences could be improved. Additionally, standardization of care practices in the art of providing excellence in the end-of-life care may be useful.
This project could serve as a model for all states that are working on end-of-life issues through their comprehensive cancer control programs. Not only does it serve as a model for assessing QOL at the end of life, but it also creates opportunities to work with non-traditional partners, such as the veterans' homes, the state hospice association, and community hospice agencies. End-of-life QOL is an important concern for many cancer patients. Through better understanding of how we die, there is a huge opportunity to improve the systems and manner in which end-of-life care is given.
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References
- National Hospice Organization. Standards of a Hospice Program of Care. Arlington, VA: National Hospice Organization; 1993.
- World Health Organization. Cancer Pain Relief and Palliative Care. Technical Report Series 804. Geneva: World Health Organization; 1990.
- Byock IR, Merriman MP. Measuring Quality of Life for Patients with Terminal Illness: The Missoula-VITAS Quality of Life Index. Palliative Medicine 1998;12:231�244.
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Contact Information
Maine Comprehensive Cancer Control Program*
Comprehensive Cancer Control Program
Maine Center for Disease Control and Prevention, DHHS
11 State House Station
286 Water Street, 5th Floor
Augusta,
ME 04333-0011
(207) 287-4715
Fax: (207) 287-7213
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