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

,

Original Research

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

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

References

1. Emanuel EJ, Emanuel LL. The promise of a good death. Lancet 1998;351(suppl):SII21-29.

2. Committee on Care at the End of Life. Approaching death: improving care at the end of life. Washington, DC: National Academy Press;1997.

3. Dickinson GE, Tournier RE, Still BJ. Twenty years beyond medical school: physicians’attitudes toward death and terminally ill patients. Arch Intern Med 1999;159:1741-44.

4. Nuland SB. How we die: reflections on life’s final chapter. New York, NY: Alfred A. Knopf; 1994.

5. Blendon RJ, Scheck AC, Donelan K, et al. How white and African Americans view their health and social problems. JAMA 1995;273:341-46.

6. Pfeifer MP, Sidorov JE, Smith AC, et al. The discussion of end-of-life medical care by primary care patients and physicians. J Gen Intern Med 1994;9:82-88.

7. American Board of Internal Medicine. Caring for the dying: identification and promotion of physician competency; personal narratives. Philadelphia, Pa: ABIM; 1996.

8. Johnston SC, Pfeifer MP. Patient and physician roles in end-of-life decision making. J Gen Intern Med 1998;13:43-45.

9. Markson L, Clark J, Glantz L, et al. The doctor’s role in discussing advance p for end-of-life care: perceptions of physicians practicing in the VA. JAGS 1997;45:399-406.

10. Task Force on the Nurse’s Role in End-of-Life Decisions. Compendium of position statements on the nurse’s role in end-of-life decisions. Washington DC, American Nurses Association; 1992.

11. Steinmetz D, Gabel LL. The family physician’s role in caring for the dying patient and family: a comprehensive theoretical model. Fam Pract 1992;9:433-36.

12. Steinmetz D, Walsh M, Gabel LL, Williams T. Family physicians’ involvement with dying patients and their families. Arch Fam Med 1993;2:753-61.

13. Farber SJ, Egnew TR, Herman-Bertsch JL. Issues in end-of-life care, family practice faculty perceptions. J Fam Pract 1999;49:525-30.

14. Asch DA, Shea JA, Jedrziewski MK, Bosk CL. The limits of suffering: critical care nurses’views of hospital care at the end of life. Soc Sci Med 1997;45:1661-68.

15. Low JT, Payne S. The good and bad death perceptions of health professionals working in palliative care. Eur J Cancer Care Engl 1996;5:237-41.

16. Schneiderman LJ. The family physician and end-of-life care. J Fam Pract 1997;45:259-62.

17. Crabtree BF, Miller WL. Doing qualitative research. Newbury Park, CA: Sage;1992.

18. Patton MQ. Qualitative evaluation and research methods. 2nd ed. Newbury Park, Calif: Sage;1990.

19. Sage Publications Sof tware. QSR NUDIST 4, SCOLARI, Thousand Oaks, Calif: Sage Publications Software; 1997.

20. Cof fey A, Atkinson P. Making sense of qualitative data. Thousand Oaks, Calif: Sage; 1997.

21. Lincoln YS, Guba EG. Naturalistic inquiry. Newbury Park, Calif: Sage; 1985.

22. Miles MB, Huberman AM. Qualitative data analysis: an expanded sourcebook. 2nd ed. Thousand Oaks, Calif: Sage; 1994.

23. Prigerson HG. Socialization to dying: social determinants of death acknowledgment and treatment among terminally ill geriatric patients. J Health Soc Behav 1992;33:378-95.

24. Mechanic D. Medical sociology. 2nd ed. New York, NY: Free Press; 1978.

25. Meier DE, Emmons CA, Wallenstein S, Quill T, Morrison RS, Cassel CK. A national survey of physician-assisted suicide and euthanasia in the United States. N Engl J Med 1998;338:1193-201.

26. Ganzini L, Johnston WS, McFarland BH, Tolle SW, Lee MA. Attitudes of patients with amyotrophic lateral sclerosis and their care givers toward assisted suicide. N Engl J Med 1998;339:967-73.

27. Seidlitz L, Duberstein PR, Cox C, Conwell Y. Attitudes of older people toward suicide and assisted suicide: an analysis of Gallup Poll findings. J Am Geriatr Soc 1995;43:993-98.

28. Sullivan M, Ormel J, Kempen GIJM, Tymstra T. Beliefs concerning death, dying, and hastening death among older, functionally impaired Dutch adults: a one-year longitudinal study. J Am Geriatr Soc 1998;46:1251-57.

29. Callahan D. Death and the research initiative. N Engl J Med 2000;342:654-56.

30. Seale C. Constructing death, the sociology of dying and bereavement. New York, NY: Cambridge University; 1998.

31. Donaldson MS, Vanselow NA. The nature of primary care. J Fam Pract 1996;42:113-16.

32. Singer PA, Martin DK, Kelner M. Quality end-of-life care, patients’perspectives. JAMA 1999;281:163-68.

33. Fox E, Landrum-McNiff K, Zhong Z, Dawson NV, Wu AW, Lynn J. Evaluation of prognostic criteria for determining hospice eligibility in patients with advanced lung, heart, or liver disease. JAMA 1999;282:1638-45.

34. Finucane TE. How gravely ill becomes dying, a key to end-of-life care. JAMA 1999;282:1670-72.

Methods

Design

Because of the exploratory nature of our study, we selected a qualitative research method (semi structured interviews) to gain a richer and more complete description of the multifaceted phenomena that occur between medical and nursing providers and their dying patients. Semi structured interviews are dialogues that are guided and open ended enough to produce transcripts of the discussion as primary data.¹⁷ Editing analysis, in which meaningful units or segments of text are identified into categories or codes that can be used to construct and interpret common themes and patterns, was chosen as a way to generate new understanding in the area of provider perceptions in end-of-life care encounters.¹⁷

Sampling

We used maximum variation sampling to obtain the broadest range of provider perspectives on end-of-life encounters.¹⁸ This approach allowed us to obtain a wide range of information and perspectives on provider perceptions of their encounters with dying patients. We therefore selected a diverse sample of physicians and nurses based on the following criteria:(1) providers in specialties that had the highest probability of encountering dying patients in their practice and (2) providers who had experience in multiple clinical settings, such as academic health centers, private practice, and community settings.

Participants

The Human Subjects Committee of the University of Kansas Medical Center approved our study. We interviewed 6 physicians and 6 nurses from a large Midwestern metropolitan area. The physicians represented the following specialties: geriatric medicine, cardiology, pulmonary medicine/critical care, internal medicine/hospice, oncology, and family practice. The nurse participants were selected from the following specialties: neurology, nephrology/dialysis unit, oncology, hospice, inpatient palliative care, and cardiology/critical care.

The average age of the participants in our sample was 44 years (range=35-54 years);2 were men, and 10 were women. The physician participants had been in practice an average of 10 years (range=5-18 years),while nurse participants had an average of 13 years’(range=5-20 years) experience.

Data Collection

We identified 12 potential participants who met the study criteria and were either known to us professionally or were suggested to us by other colleagues. These participants were contacted and invited to participate. There were no refusals. Semi structured interviews were conducted between September 1998 and April 1999 in either the participant ’s office or the investigator’s office and lasted from 1 hour to 1.5 hours. We conducted individual interviews with participants from our respective disciplines (S. A.F, nurses; T. P.D.,physicians).

Participants were asked to reflect on 2 contrasting end-of-life patient encounters that they had personally experienced in their practices. The encounters were to involve multiple contacts with a single patient who had since died. The first reflection focused on encounters that resulted in a very positive and rewarding outcome from the participant’s perspective. The second reflection involved encounters that were viewed by the participant as personally difficult and troubling. The interview began with the positive reflection, and the participants were allowed to speak freely with few interruptions. An interview guide (Appendix) provided the template for follow-up questions oriented around treatment decisions, the communication process, and participant attitudes, values, and beliefs regarding end-of-life care. All interview sessions were audiotaped and professionally transcribed.

Data Analysis

The interview transcripts were checked for accuracy and verified against the original audiotapes by the investigator who conducted the interview, and the transcripts were then formatted and entered into a qualitative software package (QSR NU*DIST).¹⁹ All data (text, codes, categories, and notes) were entered, retrieved, and analyzed using the computerized software. Independent meaningful units or segments of text that were relevant to the study purpose were identified, labeled, and organized simultaneously by the investigator/analyst in a process called coding.²⁰ After the initial coding was completed, we reviewed the data to evaluate emerging patterns and themes. This iterative process was used to search for systematic relationships and for contrasts and irregularities among the codes and categories, and it continued until consensus or agreement by the analysts was reached. Credibility was maintained by peer debriefing, a search for rival explanations in the data, and by member checking.^18,21 The interdisciplinary nature of the investigators and the iterative coding process enhanced peer debriefing and rival explanation searching, which occurred repeatedly. Member checking was conducted with 4 participants who agreed with the study findings.

Results

Participant interviews were grouped into 6 general categories:(1) provider characteristics,(2) patient characteristics,(3) interpersonal relationships,(4) prognostic certainty/clarity,(5) decision making, and (6) effective communication. Each of these categories is described below with verbatim quotes from the participants.

Provider Characteristics

Participants identified specific provider attitudes, knowledge, and skills as important components of positive encounters. Provider attitudes such as openness to discussions about death and dying, a willingness to be vulnerable, and death acceptance were associated with positive encounters. A heuristic perspective—one that incorporated a receptiveness to learning from patients, past experiences, and even painful mistakes—was inherent in these encounters.