Following the publication of two major reports on health care at the end of life, the management of death and dying continues to receive considerable attention. The two reports include: the Institute of Medicine (IOM) Committee on Care at the End of Life and findings from the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). These and other studies have identified significant failings of the American health care system to effectively manage care and meet patient and family needs during transitions from curative health care to palliative health care. Little is known about how patients and families manage transitions to end of life care or what services are needed to improve the quality of care during transitional periods.
VA is committed to improving care for veterans at the end of life and supports initiatives in pain management, physician education, collegial networks, program development, and enhanced community partnerships to promote this goal. In a recently published VA report, however, VA experts indicated that VA still has yet to achieve a desired level of quality or access to palliative care for veterans with advanced illness and their families. This report identified several issues with care for these patients, including persistent gaps in transitioning care as a result of multiple palliative care delivery models and settings and severely limited assessment of patient and family experience in palliative care in VA.
The purpose of the proposed three-year study is to describe the experience of transition to palliative care and factors associated with successful transitions, as well as suggest interventions to improve the experience. Specific aims of the proposed study include:
Aim 1: Identify and define key elements of palliative care transitions including structures, processes, and outcomes.
Aim 2: Identify factors of satisfaction and variability in patient and family experiences during transitions to palliative care
A long term goal for the research is to identify strategies that health care providers can use to improve the transition process for patients and families.
The primary source of data for this Grounded Theory study is in-depth interviews with patients, families, and health care providers. In addition, the study includes medical record review and observations of clinical encounters. The researcher has maintained research logbooks and field notes describing ongoing decisions, methods, and logistics of the study and the interpretive processes that will be subject to analysis and audit.
Grounded theory requires simultaneous data generation and analysis. Interviews with patients, families and providers and preliminary analysis are complete. Analysis used techniques of coding, memoing, sorting to restore order in data by grouping codes together to create categories; and selective coding to generate the grounded theory that relates different categories and their properties.
A focus group of VA palliative care providers from differing programs around the country was convened to review preliminary analysis and inform the final results of the study.
Transitions from curative to symptom management to palliative, for both patients and medical teams, can be distinct but generally occur over time based on the patient’s response to treatment. Physicians appear to make the transition sooner than patients; essentially, the process involves trade-offs among physician attitude toward treatment (proceed or not), the patient’s acceptance of his condition inclusive of perception of quality of life, and the patient’s clinical condition. Although home health and/or hospice can assist the patient, they are not organized to offer 24 hr care as the patient’s symptoms evolve. Eventually, a joint decision is made to readmit the patient either to the hospital or to NHCU.
The role of the PCCT seems to vary depending on the situation and the outside social support. Interdisciplinary team meetings occur for the purpose of deciding whether or not to transition a patient to palliative care, but often such meetings do not occur soon enough; consequently, patients are subjected to numerous procedures, ER visits, etc. before a decision is discussed or made– even though palliative care is discussed in the medical record. Providers deliver compassionate care but need an in-depth understanding of the trajectory of dying in the early phases of the process. Review of charts is insightful regarding roles of different providers.
It is increasingly apparent that our health care delivery system is less than successful in providing desired and appropriate supportive care to patients seeking palliative care rather than curative care. Better support for patients and families during the end-of-life trajectory will depend on developing a better understanding of the personal and affective dimensions of symptoms, attitudes, behaviors, and decision making they experience. As a key, cross-cutting experience in end of life care, the transition experience is likely to influence other important domains such as functional status, emotional symptoms, or caregiver well-being, among others. The proposed study will extend current and recent VA research by providing theoretical insight and understanding of the patient and family experience of palliative care transitions, an area that has remained problematic despite other improvements in palliative care in VA. Understanding the process of transitions to palliative care has clinical, policy, research implications for improving care to a broad range of patients who may receive end-of-life care from VA or in other integrated systems.
- Bent KN, Magilvy JK. Patient experience and satisfaction in palliative care: Influence of structure, context, and process. Paper presented at: International Network for Studies Concerning Older Adults Annual Conference; 2006 May 1; Stockholm, Sweden.
- Sakraida T, Pedro L, Cook P, Bent KN. Transition to Self-Management in Chronic Illness: A Concept Analysis. Paper presented at: Western Institute of Nursing Annual Meeting; 2006 Apr 1; Albuquerque, NM.
- Bent KN. Palliative Care Transitions: Factors in patient experience and satisfaction. Paper presented at: Association of Military Surgeons of the United States Annual Meeting; 2005 Nov 1; Nashville, TN.
- Bent KN. Palliative Care Transitions: Factors in patient experience and satisfaction. Paper presented at: Qualitative Health Research Annual Conference; 2005 May 1; Utrecht, Netherlands.
- Bent KN. Palliative Care Transitions: Factors in patient experience and satisfaction. Paper presented at: VA Pain and End-Of-Life Care Conference; 2005 Mar 1; Fort Lauderdale, FL.
- Bent KN. Palliative Care Transitions: Factors in patient experience and satisfaction. Paper presented at: Rocky Mountain Regional Multidisciplinary Research and Evidence-Based Practice Annual Symposium; 2005 Mar 1; Denver, CO.