Family Perspectives on Communication With Healthcare Providers During End-of-Life Cancer Care

Renee Royak-Schaler

Shahinaz Gadalla

Jeanne P. Lemkau

Douglas D. Ross

Carla Alexander

Deborah Scott

ONF 2006, 33(4), 753-760. DOI: 10.1188/06.ONF.753-760

Purpose/Objectives: To assess healthcare provider communication about end-of-life (EOL) and hospice care with patients with terminal cancer and their families, from the perspective of the family members.

Design: Exploratory, qualitative study using focus group discussion.

Setting: University of Maryland Greenebaum Cancer Center.

Sample: 24 spouses and first-degree relatives of deceased patients with cancer who had been treated at the cancer center from 2000-2002.

Methods: Family members participated in one of two focus group discussions and completed a short questionnaire regarding their sociodemographic characteristics and the type of EOL care their deceased relatives had received. Quantitative data were analyzed using descriptive statistics. Qualitative data were audiotaped and analyzed by comparing, contrasting, and summarizing content themes from the focus groups using NUD*IST 5(N5) software.

Main Research Variables: Family perceptions of communication with the healthcare team in EOL cancer care.

Findings: Participants associated the information, content, style, language, and timing of communication about EOL and hospice care from healthcare professionals with patient age, attitudes, and compliance with medical decisions. Informed decisions about EOL care by patients and their family members, including the use of hospice services, appeared to be compromised by these types of communication biases.

Conclusions: Satisfaction with EOL care was associated with the perceived quality of communication among patients, family members, and the healthcare team.

Implications for Nursing: Study findings highlight the importance of training healthcare professionals in the content, timing, and potential biases associated with information delivery to facilitate informed decisions about EOL and hospice care to dying patients and their families.

Jump to a section

    References

    Billings, J.A., & Kolton, E. (1999). Family satisfaction and bereavement care following death in the hospital. Journal of Palliative Medicine, 2, 33-49.

    Briss, P., Rimer, B., Reilley, B., Coates, R.C., Lee, N.C., Mullen, P., et al. (2004). Promoting informed decisions about cancer screening in communities and healthcare systems. American Journal of Preventive Medicine, 26, 67-80.

    Clayton, J.M., Butow, P.N., & Tattersall, M.H. (2005). The needs of terminally ill patients with cancer versus those of caregivers for information regarding prognosis and end-of-life issues. Cancer, 103, 1957-1964.

    A controlled trial to improve care for seriously ill hospitalized patients: The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). The SUPPORT principal investigators. (1995). JAMA, 274, 1591-1598.

    Edwards, P. (2005). An overview of the end-of-life discussion. International Journal of Palliative Nursing, 11, 21-27.

    Emanuel, L.L., von Gunten, C.F., & Ferris, F.D. (2000). Gaps in end-of-life care. Archives of Family Medicine, 9, 1176-1180.

    Faulkner, A., Webb, P., & Maguire, P. (1991). Communication and counseling skills: Educating health professionals working in cancer and palliative care. Patient Education and Counseling, 18, 3-7.

    Field, M.J., & Cassel, C.K. (Eds.). (1997). Approaching death: Improving care at the end of life. Washington, DC: National Academy Press.

    Friedman, B.T., Harwood, M.K., & Shields, M. (2002). Barriers and enablers to hospice referrals: An expert overview. Journal of Palliative Medicine, 5, 73-84.

    Gallagher, T.H., Pantilat, S.Z., Lo, B., & Papadakis, M.A. (1999). Teaching medical students to discuss advance directives: A standardized patient curriculum. Teaching and Learning in Medicine, 11, 142-147.

    Hall, J.A., Epstein, A.M., DeCiantis, M.L., & McNeil, B.J. (1993). Physicians' liking for their patients: More evidence for the role of affect in medical care. Health Psychology, 12, 140-146.

    Hanson, L.C., Danis, M., & Garrett, J. (1997). What is wrong with end-of-life care? Opinions of bereaved family members. Journal of the American Geriatrics Society, 45, 1339-1344.

    Hines, B.E., & Peura, S.M. (1995). Hospice: A place for healing and dying well. Focus, 10(8), 1-4.

    Hofmann, J.C., Wenger, N.S., Davis, R.B., Teno, J., Connors, A.F., Jr., Desbiens, N., et al. (1997). Patient preferences for communication with physicians about end-of-life decisions. SUPPORT investigatores. Study to Understand Prognoses and Preference for Outcomes and Risks of Treatment. Annals of Internal Medicine, 127, 1-12.

    Larson, D.G., & Tobin, D.R. (2000). End-of-life conversations: Evolving practice and theory. JAMA, 284, 1573-1578.

    Lo, B., Quill, T., & Tulsky, J. (1999). Discussing palliative care with patients. Annals of Internal Medicine, 130, 744-749.

    McCann, R., Chodosh, J., Frankel, R., Katz, P., Naumburg, E., Tulsky, A., et al. (1998). Advance care directives and end of life decisions: An educational module. Gerontology and Geriatric Education, 18(3), 3-19.

    McKinlay, J.B., Potter, D.A., & Feldman, H.A. (1996). Non-medical influences on medical decision-making. Social Science and Medicine, 42, 769-776.

    Mills, M., Davies, H.T.O., & Macrae, W.A. (1994). Care of dying patients in hospital. BMJ, 309, 583-586.

    National Center for Health Statistics. (2004). Hospice care definitions of terms. Retrieved April 18, 2006, from http://www.cdc.gov/nchs/about/major/nhhcsd/nhhcsdefhospicecare.htm

    Rathore, S.S., Lenert, L.A., Weinfurt, K.P., Tinoco, A., Taleghani, C.K., Harless, W., et al. (2000). The effects of patient sex and race on medical students' ratings of quality of life. American Journal of Medicine, 108, 561-566.

    Reilly, J.M., & Ring, J. (2004). An end-of-life curriculum: Empowering the resident, patient, and family. Journal of Palliative Medicine, 7, 55-62.

    Ross, D.D., Keay, T., Timmel, D., Alexander, C., Dignon, C., O'Mara, A., et al. (1999). Required training in hospice and palliative care at the University of Maryland School of Medicine. Journal of Cancer Education, 14, 132-136.

    Royak-Schaler, R., Klabunde, C.N., Greene, W.F., Lannin, D.R., DeVellis, B., Wilson, K.R., et al. (2002). Communicating breast cancer risk: Patient perceptions of provider discussions. Medscape General Medicine, 7(2). Retrieved April 18, 2006, from http://www.medscape.com/view article/429553

    Schulman, K.A., Berlin, J.A., Harless, W., Kerner, J.F., Sistrunk, S., Gersh, B.J., et al. (1999). The effect of race and sex on physicians' recommendations for cardiac catheterization. New England Journal of Medicine, 340, 618-626.

    Schulman-Green, D., McCorkle, R., Cherlin, E., Johnson-Hurzeler, R., & Bradley, E.H. (2005). Nurses' communication of prognosis and implications for hospice referral: A study of nurses caring for terminally ill hospitalized patients. American Journal of Critical Care, 14, 64-70.

    van Ryn, M., & Fu, S.S. (2003). Paved with good intentions: Do public health and human service providers contribute to racial/ethnic disparities in health? American Journal of Public Health, 93, 248-255.

    Volker, D.L., Kahn, D., & Penticuff, J.H. (2004). Patient control and end-of-life care part I: The advanced practice nurse perspective. Oncology Nursing Forum, 31, 945-953.

    von Gunten, C.F., Ferris, F.D., & Emanuel, L.L. (2000). The patient-physician relationship. Ensuring competency in end-of-life care: Communication and relational skills. JAMA, 284, 3051-3057.

    Wenrich, M.D., Curtis, J.R., Ambrozy, D.A., Carline, J.D., Shannon, S.E., & Ramsey, P.G. (2003). Dying patients' need for emotional support and personalized care from physicians: Perspectives of patients with terminal illness, families, and health care providers. Journal of Pain and Symptom Management, 25, 236-246.

    Wenrich, M.D., Curtis, J.R., Shannon, S.E., Carline, J.D., Ambrozy, D.A., & Ramsey, P.G. (2001). Communicating with dying patients within the spectrum of medical care from terminal diagnosis to death. Archives of Internal Medicine, 161, 868-874.