BACKGROUND: There is a strong impetus to improve the modern experience of dying in the United States; however, there remains a limited understanding of provider-patient encounters in end-of-life care settings. Our goal was to describe factors that providers identify as influential in their encounters with dying patients.
METHODS: We performed a qualitative study using semi structured interviews and editing analysis of 12 physicians and nurses who frequently encounter dying patients in their clinical practices.
RESULTS: We grouped participant narratives into 6 general categories: (1) provider characteristics,(2) patient characteristics,(3) effective communication,(4) decision making,(5) interpersonal relationships, and (6) diagnostic and therapeutic certainty/clarity. Death attitudes and knowledge and skill in caring for dying patients were key provider characteristics. Participants described patient attitudes as proactive and affirmative in positive encounters, and fearful, distrustful, and demanding in negative encounters. The degree of unanimity (“being on the same page ”) typified the decision making in these settings. Interpersonal relationships (the bond or sense of connection that patients had with family members and providers) were outlined by participants. Diagnostic and therapeutic certainty/clarity depicted the degree of assurance and understanding of the patient’s diagnosis and concomitant therapeutic plan. The main process category was effective communication (the ongoing sharing of information and the exploration of goals and values by an interdisciplinary team at multiple time points).
CONCLUSIONS: In their depiction of positive and negative end-of-life care patient encounters, physicians and nurses described a dynamic reorientation of both patient and provider norms, values, and behaviors from a curative biomedical perspective to a palliative course that is centered around helping patients achieve a quality, comfortable death. This socialization to a dying process has several clinical implications. First, although disseminating information and empowering patients and family members have been promoted as key communication functions for primary care providers, these tasks are very important for facilitating continuous assessment and identification of patient goals, values, and attitudes. As a result, providers may consider redirecting their clinical efforts away from exacting a disease prognosis and toward initiating and maintaining treatment plans that are developed on the basis of patient values and quality of life. Finally, by providing longitudinal, comprehensive, and patient-centered care family physicians and other primary care, providers should gauge the impact of social and cultural influences in their dying patients and promote the incorporation of these factors into care planning.
There is a strong impetus to better understand the contemporary experience of dying and to improve end-of-life care in the United States.1 Effective communication between patients and their care providers has been promoted as a key element within this experience and as a critical factor for maintaining quality of life during end-of-life care.2 Multiple factors can impede or facilitate communication in this arena: attitudes toward death and dying,3 provider and patient anxiety over diagnostic and prognostic discussions,4 and cultural, socioeconomic, and educational influences.5 These factors highlight the nature and context of the provider-patient relationship, which plays a central role in end-of-life medical care for primary care physicians.6 Although much emphasis has been given to improving providers’communication skills7 and to facilitating decision making,8-10 there is a paucity of research on the actual dynamics of the provider-patient encounter in end-of-life care.
One theoretical model of physician attitudes and roles in their encounters with dying patients incorporated 3 dimensions: direct involvement with the patient, the physician’s own needs and development, and cooperation with other caregivers.11 Subsequent qualitative research with family physicians supported these dimensions and emphasized the primacy of the patient relationship and the area of physician personal domain.12,13 However, the applicability of these findings and the model they provide to other specialties and disciplines that are involved in end-of-life care remains unclear. Studies of critical care nurses also identified patient concerns and their own personal concerns as key areas and raised the issue of frustration in their limited role in the management of patients at the end of life.14 In a study of palliative care workers, most perceived themselves as open and sensitive to their patients, although many felt poorly supported by other staff members.15
A greater and more complete understanding of the provider’s perspective of the provider-patient encounters in end-of-life care could enhance communication and decision making. This area of inquiry is especially salient in light of the recent Commonwealth-Cummings project on the quality of care at the end of life, which has identified medical provider interventions as one of 4 critical components in a multifaceted framework for a good death.1 In addition, facilitating the communication and decision-making processes that accompany care at the end of life has been suggested as a key role for family physicians and other generalist providers.16 We conducted a study using qualitative research methods to explore and describe the nature of provider-patient encounters at the end of life. Our specific aim with this study was to describe factors that both medical and nursing providers identify as influential in their positive and negative encounters with dying patients.