This study addresses a central paradox in the effort to improve the care of dying patients. Although patients’ treatment preferences are frequently unmet at the end of life, family members are highly satisfied with the care the patients receive prior to their death, and there is little documentation of conflict surrounding treatment decision-making. Because caregiver satisfaction is a central component of the quality of end-of-life care, and because caregivers are often used as informants of the quality of the patient’s death, understanding this paradox is key to guiding improvements in end-of-life care.
The specific aims of the study are: 1) to examine the reasons why patients’ previously expressed treatment preferences are or are not honored at the end of life; and 2) to examine factors moderating the relationship between a failure to honor patients’ preferences and caregivers’ satisfaction with end-of-life care.
This study builds upon an ongoing project in which we have assembled a unique cohort of 226 older, community-dwelling persons with advanced congestive heart failure, chronic obstructive pulmonary disease, and cancer; their caregivers; and their physicians. The study involves the caregivers’ and physicians’ reports of the events surrounding the patient’s final illness and death, in the context of the previous interviews elucidating the patient’s preferences. Six months after the death of a patient, the caregiver receives an in-person interview. These interviews are being conducted in an open-ended manner, allowing the family member to tell the story of the patient’s final illness and its treatment. Clinician interviews will explore clinicians’ perceptions of the patient’s end-of-life care. For those who died in an institutional setting, medical chart reviews will also be conducted to examine documentation of the clinical circumstances of the patient’s death. Qualitative analysis of the transcripts of caregiver and clinician interviews, supplemented by the chart review data, will examine caregivers’ perceptions of whether and why patients’ preferences were or were not honored, caregivers’ perceptions of both their own and patients’ additional end-of-life concerns, the treatment choices offered by clinicians to patients, and the clinical circumstances of the patient’s death.
As analysis is ongoing, there are no results to report.
With the aging of both the veteran population and the population as a whole, issues related to the delivery of high quality end-of-life care become increasingly more urgent. The diseases represented in this study: cancer, congestive heart failure, and chronic obstructive pulmonary disease, are highly prevalent among veterans, accounting for the majority of VA hospital admissions and are among the top four causes of deaths nationally. By providing a description of how and why patients’ preferences are and are not honored grounded in the experiences of the patient and caregiver, the results of this study will provide a patient- and caregiver-centered model of the barriers to honoring patient preferences and the consequences of failing to do so. This model will then inform future quantitative studies to determine the frequency of these barriers and consequences and future interventions to promote end-of-life care that better meets the needs of older seriously ill persons and their caregivers.
External Links for this Project
None at this time.