Article

Communication Behaviors and Patient and Caregiver Emotional Concerns: A Description of Home Hospice Communication

Margaret F. Clayton

Maija Reblin

Mckenzie Carlisle

Lee Ellington

anxiety, family, caregivers, end-of-life, hospice, communication
ONF 2014, 41(3), 311-321. DOI: 10.1188/14.ONF.311-321

Purpose/Objectives: To identify and describe communication behaviors used by hospice nurses when eliciting and addressing concerns of patients with cancer and their caregivers.

Design: Secondary analysis.

Setting: Home hospice in Salt Lake City, UT.

Sample: Audio recordings from seven patient and caregiver dyads and five hospice nurses.

Methods: Audio recordings were coded using the Roter Interaction Analysis System for patient and caregiver concern statements indicating negative affect and distress and the surrounding nurse communication behaviors. Concern content was categorized using domains developed by the National Consensus Project for Quality Palliative Care.

Main Research Variables: Patient and caregiver concern statements and nurse communication behaviors.

Findings: 180 patient and caregiver speaking turns containing concerns were identified across 31 hospice visits. Patients and caregivers expressed at least one concern in the vast majority of visits. The most prevalent distress areas reflected psychological and physical issues. Nurses used proportionally more positive emotion statements before patient and caregiver concerns, compared to the visit overall. Nurses asked proportionally more physical questions after concern statements. Nurses also used more emotional responses before and after patient and caregiver concerns, relative to the entire visit.

Conclusions: Patients with cancer and caregivers frequently talk about distressing issues. Hospice nurses use specific communication behaviors to elicit and address those issues.

Implications for Nursing: Home hospice provides a venue to examine nurse communication behaviors used to elicit and respond to patient and caregiver distress. These strategies could be taught to nurses who encounter patient distress less frequently or are less comfortable with emotional conversations.

Jump to a section

    References

    American Association of Colleges of Nursing. (2014). End-of-Life Nursing Education Consortium (ELNEC). Retrieved from http://www.aacn.nche.edu/elnec
    Beach, W.A., Easter, D.W., Good, J.S., & Pigeron, E. (2005). Disclosing and responding to cancer "fears" during oncology interviews. Social Science and Medicine, 60, 893-910. doi:10.1016/j.socscimed.2004.06.031
    Berry, D.S., & Pennebaker, J.W. (1993). Nonverbal and verbal emotional expression and health. Psychotherapy and Psychosomatics, 59, 11-19. doi:10.1159/000288640
    Berry, P.H. (Ed.). (2010). Core curriculum for the generalist hospice and palliative nurse (3rd ed.). Dubuque, IA: Kendall Hunt.
    Berry, P.H., & Griffie, J. (2010). Planning for the actual death. In B.R. Ferrell & N. Coyle (Eds.), Textbook of palliative nursing (3rd ed., pp. 629-646). New York, NY: Oxford University Press.
    Butow, P.N., Brown, R.F., Cogar, S., Tattersall, M.H., & Dunn, S.M. (2002). Oncologists' reactions to cancer patients' verbal cues. Psycho-Oncology, 11, 47-58. doi:10.1002/pon.556
    Carr, D. (2003). A "good death" for whom? Quality of spouse's death and psychological distress among older widowed persons. Journal of Health and Social Behavior, 44, 215-232. doi:10.2307/1519809
    Cherlin, E., Fried, T., Prigerson, H.G., Schulman-Green, D., Johnson-Hurzeler, R., & Bradley, E.H. (2005). Communication between physicians and family caregivers about care at the end of life: When do discussions occur and what is said? Journal of Palliative Medicine, 8, 1176-1185. doi:10.1089/jpm.2005.8.1176
    Clayton, M.F., & Ellington, L. (2011). Beyond primary care providers: A discussion of health communication roles and challenges for health care professionals and others. In T.L. Thompson, R. Parrott, & J.F. Nussbaum (Eds.), Handbook of health communication (2nd ed., pp. 69-83). New York, NY: Routledge.
    Coyle, N. (2006). Introduction to palliative nursing care. In B.R. Ferrell & N. Coyle (Eds.), Textbook of palliative nursing (2nd ed., pp. 5-12). New York, NY: Oxford University Press.
    Croyle, R. (2007). Foreword. In R.M. Epstein & R.L. Street, Jr. (Eds.), Patient-centered communication in cancer care: Promoting healing and reducing suffering (p. X). Bethesda, MD: National Cancer Institute.
    Dahlin, C. (Ed.). (2013). National Consensus Project for Quality Palliative Care: Clinical practice guidelines for quality palliative care (3rd ed.). Retrieved from http://www.nationalconsensusproject.org/NCP_Clinical_Practice_Guidelines_3rd_Edition.pdf
    Del Piccolo, L., de Haes, H., Heaven, C., Jansen, J., Verheul, W., Bensing, J., … Finset, A. (2011). Development of the Verona coding definitions of emotional sequences to code health providers' responses (VR-CoDES-P) to patient cues and concerns. Patient Education and Counseling, 82, 149-155. doi:10.1016/j.pec.2010.02.024
    Doorenbos, A.Z., Given, B., Given, C.W., Wyatt, G., Gift, A., Rahbar, M., Jeon, S. (2007). The influence of end-of-life cancer care on caregivers. Research in Nursing and Health, 30, 270-281. doi:10.1002/nur.20217
    Eide, H., Quera, V., Graugaard, P., & Finset, A. (2004). Physician-patient dialogue surrounding patients' expression of concern: Applying sequence analysis to RIAS. Social Science and Medicine, 59, 145-155. doi:10.1016/j.socscimed.2003.10.011
    Ellington, L., Cloyes, K., Berry, P., Thomas, N.T., Reblin, M. & Clayton, M.F. (2013). Complexities for hospice nurses in supporting family caregivers: Opinions from U.S. thought leaders. Journal of Palliative Medicine, 16, 1013-1019. doi:10.1089/jpm.2013.0116
    Ellington, L., Kelly, K.M., Reblin, M., Latimer, S., & Roter, D. (2011). Communication in genetic counseling: Cognitive and emotional processing. Health Communication, 26, 667-675. doi:10.1080/10410236.2011.561921
    Ellington, L., Reblin, M., Clayton, M.F., Berry, P., & Mooney, K. (2012). Hospice nurse communication with patients with cancer and their family caregivers. Journal of Palliative Medicine, 15, 262-268. doi:10.1089/jpm.2011.0287
    Epstein, R.M., & Street, R.L., Jr. (Eds.). (2007). Patient-centered communication in cancer care: Promoting healing and reducing suffering. Bethesda, MD: National Cancer Institute.
    Evans, B.C., & Ume, E. (2012). Psychosocial, cultural, and spiritual health disparities in end-of-life and palliative care: Where we are and where we need to go. Nursing Outlook, 60, 370-375. doi:10.1016/j.outlook.2012.08.008
    Fallowfield, L., Jenkins, V., Farewell, V., Saul, J., Duffy, A., & Eves, R. (2002). Efficacy of a Cancer Research UK communication skills training model for oncologists: A randomised controlled trial. Lancet, 359, 650-656. doi:10.1016/S0140-6736(02)07810-8
    Fallowfield, L., Ratcliffe, D., Jenkins, V., & Saul, J. (2001). Psychiatric morbidity and its recognition by doctors in patients with cancer. British Journal of Cancer, 84, 1011-1015. doi:10.1054/bjoc.2001.1724
    Fallowfield, L.J., Jenkins, V.A., & Beveridge, H.A. (2002). Truth may hurt but deceit hurts more: Communication in palliative care. Palliative Medicine, 16, 297-303. doi:10.1191/0269216302pm575oa
    Gross, J. (1989). Emotional expression in cancer onset and progression. Social Science and Medicine, 28, 1239-1248. doi:10.1016/0277-9536(89)90342-0
    Grunfeld, E., Coyle, D., Whelan, T., Clinch, J., Reyno, L., Earle, C.C., … Glossop, R. (2004). Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. CMAJ: Canadian Medical Association Journal, 170, 1795-1801. doi:10.1503/cmaj.1031205
    Heaven, C.M., & Maguire, P. (1997). Disclosure of concerns by hospice patients and their identification by nurses. Palliative Medicine, 11, 283-290. doi:10.1177/026921639701100404
    Hoyt, M.A., Stanton, A.L., Bower, J.E., Thomas, K.S., Litwin, M.S., Breen, E.C., & Irwin, M.R. (2013). Inflammatory biomarkers and emotional approach coping in men with prostate cancer. Brain, Behavior, and Immunity, 32, 173-179. doi:10.1016/j.bbi.2013.04.008
    Jansen, J., van Weert, J.C., de Groot, J., van Dulmen, S., Heeren, T.J., & Bensing, J.M. (2010). Emotional and informational patient cues: The impact of nurses' responses on recall. Patient Education and Counseling, 79, 218-224. doi:10.1016/j.pec.2009.10.010
    Johnston, B., & Smith, L.N. (2006). Nurses' and patients' perceptions of expert palliative nursing care. Journal of Advanced Nursing, 54, 700-709. doi:10.1111/j.1365-2648.2006.03857.x
    Kim, Y., & Schulz, R. (2008). Family caregivers' strains: Comparative analysis of cancer caregiving with dementia, diabetes, and frail elderly caregiving. Journal of Aging and Health, 20, 483-503. doi:10.1177/0898264308317533
    Kreps, G., & Viswanath, K. (2001). Communication interventions and cancer control: A review of the National Cancer Institute's health communication intervention research initiative. Family and Community Health, 24, ix-xiii. doi:10.1097/00003727-200110000-00002
    Kreps, G.L., Arora, N.K., & Nelson, D.E. (2003). Consumer/provider communication research: Directions for development. Patient Education and Counseling, 50, 3-4. doi:10.1016/S0738-3991(03)00070-3
    Langer, S.L., Rudd, M.E., & Syrjala, K.L. (2007). Protective buffering and emotional desynchrony among spousal caregivers of cancer patients. Health Psychology, 26, 635-643. doi:10.1037/0278-6133.26.5.635
    Levinson, W., Gorawara-Bhat, R., & Lamb, J. (2000). A study of patient clues and physician responses in primary care and surgical settings. JAMA, 284, 1021-1027. doi:10.1001/jama.284.8.1021
    Lunney, J.R., Foley, K.M., Smith, T.J., & Gelband, H. (Eds.). (2003). Describing death in America: What we need to know. Washington, DC: National Academies Press.
    Maguire, P., Booth, K., Elliott, C., & Jones, B. (1996). Helping health professionals involved in cancer care acquire key interviewing skills—The impact of workshops. European Journal of Cancer, 32A, 1486-1489. doi:10.1016/0959-8049(96)00059-7
    McCorkle, R., & Pasacreta, J.V. (2001). Enhancing caregiver outcomes in palliative care. Cancer Control, 8, 36-45.
    McGuire, D.B., Grant, M., & Park, J. (2012). Palliative care and end of life: The caregiver. Nursing Outlook, 60, 351-356. doi:10.1016/j.outlook.2012.08.003
    National Hospice and Palliative Care Organization. (2012). NHPCO Facts and figures: Hospice care in America. Retrieved from http://www.nhpco.org/sites/default/files/public/Statistics_Research/2012_Facts_Figures.pdf
    Osse, B.H., Vernooij-Dassen, M.J., Schadé, E., de Vree, B., van den Muijsenbergh, M.E., & Grol, R.P. (2002). Problems to discuss with cancer patients in palliative care: A comprehensive approach. Patient Education and Counseling, 47, 195-204. doi:10.1016/S0738-3991(02)00019-8
    Parker, S.M., Clayton, J.M., Hancock, K., Walder, S., Butow, P.N., Carrick, S., … Tattersall, M.H. (2007). A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: Patient/caregiver preferences for the content, style, and timing of information. Journal of Pain and Symptom Management, 34, 81-93. doi:10.1016/j.jpainsymman.2006.09.035
    Pennebaker, J.W., Mayne, T.J., & Francis, M.E. (1997). Linguistic predictors of adaptive bereavement. Journal of Personality and Social Psychology, 72, 863-871. doi:10.1037/0022-3514.72.4.863
    Petrie, K.J., Booth, R.J., & Pennebaker, J.W. (1998). The immunological effects of thought suppression. Journal of Personality and Social Psychology, 75, 1264-1272. doi:10.1037/0022-3514.75.5.1264
    Phipps, W.E. (1988). The origin of hospices/hospitals. Death Studies, 12, 91-99. doi:10.1080/07481188808252226
    Porter, L.S., Keefe, F.J., Lipkus, I., & Hurwitz, H. (2005). Ambivalence over emotional expression in patients with gastrointestinal cancer and their caregivers: Associations with patient pain and quality of life. Pain, 117, 340-348. doi: 10.1016/j.pain.2005.06.021
    Prigerson, H.G., Cherlin, E., Chen, J.H., Kasl, S.V., Hurzeler, R., & Bradley, E.H. (2003). The Stressful Caregiving Adult Reactions to Experiences of Dying (SCARED) Scale: A measure for assessing caregiver exposure to distress in terminal care. American Journal of Geriatric Psychiatry, 11, 309-319. doi:10.1097/00019442-200305000-00008
    Proot, I.M., Abu-Saad, H.H., Crebolder, H.F., Goldsteen, M., Luker, K.A., & Widdershoven, G.A. (2003). Vulnerability of family caregivers in terminal palliative care at home; balancing between burden and capacity. Scandinavian Journal of Caring Sciences, 17, 113-121. doi:10.1046/j.1471-6712.2003.00220.x
    RIASWorks. (2012). RIAS background and coding manual. Retrieved from http://www.riasworks.com/background.html
    Rossi Ferrario, S., Cardillo, V., Vicario, F., Balzarini, E., & Zotti, A.M. (2004). Advanced cancer at home: Caregiving and bereavement. Palliative Medicine, 18, 129-136. doi:10.1191/0269216304pm870oa
    Roter, D.L., & Hall, J.A. (1997). Patient-provider communication. In K. Glanz, F.M. Lewis, & B.K. Rimer (Eds.), Health behavior and health education theory education and practice. (2nd ed., pp. 206-226). San Francisco, CA: Jossey-Bass.
    Roter, D.L., Hall, J.A., & Aoki, Y. (2002). Physician gender effects in medical communication: A meta-analytic review. JAMA, 288, 756-764. doi:10.1001/jama.288.6.756
    Roter, D.L., Stewart, M., Putnam, S.M., Lipkin, M., Jr., Stiles, W., & Inui, T.S. (1997). Communication patterns of primary care physicians. JAMA, 277, 350-356. doi:10.1001/jama.1997.03540280088045
    Royak-Schaler, R., Gadalla, S., Lemkau, J., Ross, D., Alexander, C., & Scott, D. (2006). Family perspectives on communication with healthcare providers during end-of-life cancer care. Oncology Nursing Forum, 33, 753-760. doi:10.1188/06.ONF.753-760
    Sandhu, H., Dale, J., Stallard, N., Crouch, R., & Glucksman, E. (2009). Emergency nurse practitioners and doctors consulting with patients in an emergency department: A comparison of communication skills and satisfaction. Emergency Medicine Journal, 26, 400-404. doi:10.1136/emj.2008.058917
    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.
    Schulz, R., Burgio, L., Burns, R., Eisdorfer, C., Gallagher-Thompson, D., Gitlin, L.N., & Mahoney, D.F. (2003). Resources for Enhancing Alzheimer's Caregiver Health (REACH): Overview, site-specific outcomes, and future directions. Gerontologist, 43, 514-520. doi:10.1093/geront/43.4.514
    Sharpe, L., Butow, P., Smith, C., McConnell, D., & Clarke, S. (2005). The relationship between available support, unmet needs and caregiver burden in patients with advanced cancer and their carers. Psycho-Oncology, 14, 102-114. doi:10.1002/pon.825
    Shaw, J.R., Adams, C.L., Bonnett, B.N., Larson, S., & Roter, D.L. (2008). Veterinarian-client-patient communication during wellness appointments versus appointments related to a health problem in companion animal practice. Journal of the American Veterinary Medical Association, 233, 1576-1586. doi:10.2460/javma.233.10.1576
    Sheldon, L.K., Ellington, L., Barrett, R., Dudley, W.N., Clayton, M.F., & Rinaldi, K. (2009). Nurse responsiveness to cancer patient expressions of emotion. Patient Education and Counseling, 76, 63-70. doi:10.1016/j.pec.2008.11.010
    Smith, T.J., Temin, S., Alesi, E.R., Abernethy, A.P., Balboni, T.A., Basch, E.M., … Von Roenn, J.H. (2012). American Society of Clinical Oncology provisional clinical opinion: The integration of palliative care into standard oncology care. Journal of Clinical Oncology, 30, 880-887. doi:10.1200/JCO.2011.38.5161
    Stanton, A.L., Danoff-Burg, S., Cameron, C.L., Bishop, M., Collins, C.A., Kirk, S.B., … Twillman, R. (2000). Emotionally expressive coping predicts psychological and physical adjustment to breast cancer. Journal of Consulting and Clinical Psychology, 68, 875-882. doi:10.1037/0022-006X.68.5.875
    Steinhauser, K.E. (2005). Measuring end-of-life care outcomes prospectively. Journal of Palliative Medicine, 8, S30-S41. doi:10.1089/jpm.2005.8.s-30
    Steinhauser, K.E., Christakis, N.A., Clipp, E.C., McNeilly, M., McIntyre, L., & Tulsky, J.A. (2000). Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA, 284, 2476-2482. doi:10.1001/jama.284.19.2476
    Street, R.L., Jr., Makoul, G., Arora, N.K., & Epstein, R.M. (2009). How does communication heal? Pathways linking clinician-patient communication to health outcomes. Patient Education and Counseling, 74, 295-301. doi:10.1016/j.pec.2008.11.015
    Stroebe, M., Schut, H., & Stroebe, W. (2007). Health outcomes of bereavement. Lancet, 370, 1960-1973. doi:10.1016/S0140-6736(07)61816-9
    Suchman, A.L., Markakis, K., Beckman, H.B., & Frankel, R. (1997). A model of empathic communication in the medical interview. JAMA, 277, 678-682. doi:10.1001/jama.1997.03540320082047
    Suls, J., Green, P., Rose, G., Lounsbury, P., & Gordon, E. (1997). Hiding worries from one's spouse: Associations between coping via protective buffering and distress in male post-myocardial infarction patients and their wives. Journal of Behavioral Medicine, 20, 333-349. doi:10.1023/A:1025513029605
    Tulsky, J.A. (2005). Interventions to enhance communication among patients, providers, and families. Journal of Palliative Medicine, 8(Suppl.), S95-S102. doi:10.1089/jpm.2005.8.s-95
    Uitterhoeve, R., Bensing, J., Dilven, E., Donders, R., deMulder, P., & van Achterberg, T. (2009). Nurse-patient communication in cancer care: Does responding to patient's cues predict patient satisfaction with communication. Psycho-Oncology, 18, 1060-1068. doi:10.1002/pon.1434
    Wilkinson, S., Perry, R., Blanchard, K., & Linsell, L. (2008). Effectiveness of a three-day communication skills course in changing nurses' communication skills with cancer/palliative care patients: A randomised controlled trial. Palliative Medicine, 22, 365-375. doi:10.1177/0269216308090770
    Williams, M.A., & Wheeler, M.S. (2001). Palliative care: What is it? Home Healthcare Nurse, 19, 550-556.
    Wissow, L.S., Brown, J.D., & Krupnick, J. (2010). Therapeutic alliance in pediatric primary care: Preliminary evidence for a relationship with physician communication style and mothers' satisfaction. Journal of Developmental and Behavioral Pediatrics, 31, 83-91.
    Wissow, L.S., Roter, D.L., & Wilson, M.E. (1994). Pediatrician interview style and mothers' disclosure of psychosocial issues. Pediatrics, 93, 289-295.
    Ylitalo, N., Valdimarsdóttir, U., Onelöv, E., Dickman, P.W., & Steineck, G. (2008). Guilt after the loss of a husband to cancer: Is there a relation with the health care provided? Acta Oncologica, 47, 870-878. doi:10.1080/02841860701766145
    Zimmermann, C., Del Piccolo, L., & Finset, A. (2007). Cues and concerns by patients in medical consultations: A literature review. Psychological Bulletin, 133, 438-463. doi:10.1037/0033-2909.133.3.438