Defining Effective Clinician Roles in End-of-Life Care

,

Original Research

Defining Effective Clinician Roles in End-of-Life Care

J Fam Pract. 2002 February;51(2):153-158

By

Stuart J. Farber, MD

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References

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ABSTRACT

OBJECTIVE: Our goal was to determine primary care clinician perceptions of what is important to the provision of quality end-of-life care.

STUDY DESIGN: We used ethnography, a qualitative research method involving the use of open-ended semistructured interviews.

POPULATION: We included 38 family practice residency faculty from 9 community residency programs of the Affiliated Family Practice Residency Network, Department of Family Medicine, University of Washington School of Medicine.

OUTCOMES MEASURED: The roles described by interviewees when discussing their best practices while delivering end-of-life care were compiled.

RESULTS: Primary care clinicians organize their delivery of quality end-of-life care predominantly through their relationships with patients and families. They play 3 roles when providing end-of-life care. As consultants, clinicians provide expert medical advice and treatment. As collaborators, they seek to understand the patient and family experience. Seasoned clinicians act as guides, using their personal intuitive knowledge of patient and family to facilitate everyone’s growth when providing end-of-life care.

CONCLUSIONS: Shifting clinician focus from skills and knowledge toward relationship, meaning, and roles provides new opportunities to improve end-of-life care for patients, families, and clinicians.

KEY POINTS FOR CLINICIANS

Exemplary end-of-life care is organized around relationships, meaning, and roles.
Knowledge and skills are essential but are not how exemplary end-of-life care is organized.
Clinicians providing end-of-life care play 3 roles: consultant, collaborator, and guide.
Shifting clinician focus from skills and knowledge toward relationship, meaning, and roles provides new opportunities to improve care.

Modern medicine has dramatically improved the length and quality of life for countless persons but has also created problems in integrating these advances with end-of-life care. Although 70% of Americans want to die in their own home supported by family, 74% of Americans currently die in institutions.^1,2 Clearly, there is a disparity between patient preferences and the end-of-life services provided in America.

Most recommendations for the provision of quality end-of-life care are based on unresearched expert opinion that identifies problems and offers solutions.^3-5 Studies have explored communication strategies,⁶ satisfaction levels with care,⁷ perceptions of management issues,⁸ and attitudes toward both death and dying patients.⁹ Yet little research addresses how practicing community clinicians develop the appropriate relationships and integrate the requisite knowledge, skills, and attitudes to provide quality end-of-life care.

The relationship between clinician, patient, and family and the personal meaning of events for each participant greatly influence end-of-life care.¹⁰ Although most commentary on physician roles and relationships in end-of-life care also reflects unresearched expert opinion,^11-13 Steinmetz and Gabel^14,15 theorized a model that was later validated against the experience of practicing family physicians. The role of the clinician in the successful provision of quality care has not been systematically researched and remains a major challenge to improving end-of-life care. We describe an exploratory qualitative study to determine the perceptions of practicing clinicians regarding quality end-of-life care.

Methods

With approval from the Human Subjects Committee of the University of Washington School of Medicine, faculty were recruited from 9 community programs in the Affiliated Family Practice Residency Network of the Department of Family Medicine. Twenty semistructured long interviews were conducted from a convenience sample at 3 residency sites.¹⁶ An additional 8 semistructured interviews and 2 focus groups (10 participants) further explored the data. Thus, a total of 38 clinicians participated in the study. Demographic characteristics of the study cohort have been published previously.¹⁰

We conducted the initial 20 interviews using open-ended questions designed to uncover faculty perceptions of quality end-of-life care. The questions explored may be found in the Table. Nonspecific prompts such as “tell me more” were used to enrich data and avoid interviewer bias. The interview was rehearsed with a medical school faculty expert in ethnographic research, field tested, and adjusted before final use. The interviews were audio-recorded and transcribed into qualitative research software.¹⁷

Throughout the interview process, the investigators met weekly to compare findings, discuss emerging categories, and jointly code the transcripts for model development using the process of grounded theory described by Glaser and Strauss.¹⁸ Common themes, communication and educational issues, and roles and relationships were identified. Data were constantly compared and winnowed to facilitate manageability; data collection and analysis occurred simultaneously.^19,20 Common themes are published elsewhere.¹⁰ We report and discuss the analysis of the data pertaining to clinician roles and relationships.

We employed the following 3 strategies to assess the methodologic validity of the study and face validity of the themes and models emerging from the data analysis.

TABLE
INTERVIEW QUESTIONS

Remember a case in which you provided care for a patient and family facing a chronic, progressive, terminal illness:

Using the case as a frame of reference, what are the important issues you face as you care for patients and families at the end of life?
What approaches/strategies/methods do you use to deal with these issues?
How successful are these approaches/strategies/methods in dealing with these issues?
What experiences should residents have to prepare them to provide patients and families with quality end-of-life care?