Physician and Nursing Perspectives on Patient Encounters in End-of-Life Care

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Original Research

Physician and Nursing Perspectives on Patient Encounters in End-of-Life Care

J Fam Pract. 2001 February;50(2):155-162

References

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Our framework suggests that 4 content domains (provider and patient characteristics, interpersonal relationships, prognostic certainty, and clarity) and 2 process domains (effective communication, and decision making and planning) are key components for understanding the socialization process that providers and patients undergo in end-of-life care. Attitudinal variables such as death acceptance and openness to discussions about death and dying were the major common elements of both provider and patient characteristics in our study. Recent attitudinal research on end-of-life care has focused on the volatile issue of physician-assisted suicide and euthanasia.^25,26 The balance of these studies suggest that demographic and social variables such as sex, education level, and religiosity are tied to both physician and patient attitudes toward death and dying. Religiosity and sex—in addition to mental health status and general health status—are key variables in understanding death attitudes in elderly populations.^27,28

Structuration theory (the construction of meaning through social interaction) provides a useful way to view these findings and the larger current ambivalence and confusion in the United States of how to best understand and situate death.²⁹ This orientation maintains that social determinants such as education, religion, and culture are major elements that facilitate the interpretation and understanding of death and dying.³⁰ If death attitudes serve as proxies for an understanding of death and dying, our results and our framework are congruent with this perspective and have practical implications as well. Socially constructed death attitudes greatly contribute and may be predictive of the end-of-life care experience for both patients and providers. For example, patients or providers with death attitudes characterized by a fear of death or death anxiety may rarely consider—much less begin—the difficult transition from serious illness to dying. As a result, the quality-of-life for these dying patients would be greatly diminished and minimally affected by interventions that are not cognizant of this process. By providing care that is longitudinal, comprehensive, and patient-centered,³¹ family physicians and other primary care physicians are in a unique and advantageous position to assess the impact of social and cultural influences in their dying patients and to incorporate these determinants in their care plans.

Participants in our study cited the quality and character of interpersonal relationships in demarcating positive and negative encounters. Previous qualitative work with patients has also validated the importance of strengthening relationships with loved ones as a domain of quality end-of-life care.³² Our findings suggest that these relationships may be inclusive of provider-patient relationships, as well as an identified spiritual component. According to our study participants, the prognostic clarity of the disease facilitated positive encounters. There is widespread interest in developing and refining prognostic criteria in diseases involving chronic organ disease, although the clinical prediction of nonmalignant disease remains largely ineffective.³³ From a practical viewpoint, our study suggests that primary care providers may consider redirecting their attention away from exacting a disease prognosis toward identifying and enhancing supportive relationships for the patient and developing treatment plans based on personal values and quality of life.

Effective communication is the keystone of the framework and is intertwined with the additional process domain of decision making and planning. Participants amplified several tasks and characteristics of effective communication as central to guiding the patient through the critical transition of curative orientation—in the face of a life-limiting illness—to a dying one. The central place of effective communication in our framework highlights an additional role for family physicians as they care for patients at the end of life. Although disseminating information and empowering patients and family members have been promoted as key functions for providers,³⁴ participants in our study suggest that this process is more inclusive than these tasks. The continuous assessment and identification of patient goals, values, and feelings at multiple time points are functions that are of ten relegated to nonmedical or non-nursing (ie, social work, pastoral care) providers, yet participants in our study cited these responsibilities as vital.

Limitations

There are several limitations to our study. As an exploratory study, the sample size is small and the conceptual framework generally should be considered preliminary and open to modification. Qualitative studies are not intended to be statistically representative of any population but to provide an in-depth examination of complex phenomena. The frequency and validation of participant experiences were not determined. However, the strength of this investigation lies in the in-depth examination and the emerging conceptual framework. Although our categories may be self-evident as factors potentially influencing the outcome of provider-patient encounters in end-of-life care (eg, patient and provider death attitudes),our framework depicts them as a dynamic, complex interaction of modifiable and potentially nonmodifiable factors. Recent initiatives on provider training to improve the quality of care at the end of life (eg, the American Medical Association’s Education for Physicians on End-of-life Care project) are extremely important yet may simplify this complex interaction and the difficulty (or in some cases the impossibility) of assisting a patient’s socialization to dying. Finally, our theoretical framework is based on the provider’s perspective and does not address the patient, family, or caregiver view.