Families and the transition to specialist palliative care

Mortality

Volumn 19, Issue 4, 2014, Pages 323-341

  Kirby, Emma ^a   Broom, Alex ^a   Good, Phillip ^b   Wootton, Julia ^b   Adams, Jon ^c  

^a UNIVERSITY OF QUEENSLAND   (Australia)

^b ST VINCENT S HOSPITAL   (Australia)

^c UNIVERSITY OF TECHNOLOGY SYDNEY   (Australia)

Author keywords

Australia; end of life; families; palliative care; qualitative interviews; sociology

Indexed keywords

EID: 84920153112     PISSN: 13576275     EISSN: 14699885     Source Type: Journal    
DOI: 10.1080/13576275.2014.916258     Document Type: Article

References (78)

1. Aoun, S. (2004). The hardest thing we have ever done: The social impact of caring for terminally ill people in Australia. Deakin West: PCA.
2. Back, A., Arnold, R., Baile, W., Tulsky, J., & Fryer-Edwards, K. (2005). Approaching difficult communication tasks in oncology. CA: A Cancer Journal for Clinicians, 55, 164–177. doi:10.3322/canjclin.55.3.164
3. Back, A., Arnold, R., & Quill, T. (2003). Hope for the best, and prepare for the worst. Annals of Internal Medicine, 138, 439–443.10.7326/0003-4819-138-5-200303040-00028
4. Barclay, S., & Maher, J. (2010). Having the difficult conversations about the end of life. British Medical Journal, 341, c4862. doi:10.1136/bmj.c486210.1136/bmj.c4862
5. Beach, M., & Inui, T. (2006). Relationship-centered care. A constructive reframing. Journal of General Internal Medicine, 21, S3–S8. doi:10.1111/j.1525-1497.2006.00302.x10.1111/jgi.2006.21.issue-s1
6. Bertakis, K., Franks, P., & Epstein, R. (2009). Patient-centered communication in primary care: Physician and patient gender and gender concordance. Journal of Women’s Health, 18, 539–545. doi:10.1089/jwh.2008.096910.1089/jwh.2008.0969
7. Borgstrom, E., Cohn, S., & Barclay, S. (2010). Medical professionalism: Conflicting values for tomorrow’s doctors. Journal of General Internal Medicine, 25, 1330–1336. doi:10.1007/s11606-010-1485-810.1007/s11606-010-1485-8
8. Bowman, K. (2000). Communication, negotiation, and mediation: Dealing with conflict in end-of-life. Journal of Palliative Care, 16, S17–S23.
9. Brickner, L., Scannell, K., Marquet, S., & Ackerson, L. (2004). Barriers to hospice care and referrals: Survey of physicians’ knowledge, attitudes and perceptions in a health maintenance organization. Journal of Palliative Medicine, 7, 411–418. doi:10.1089/109662104134951810.1089/1096621041349518
10. Broom, A., & Kirby, E. (2013). The end of life and the family: Hospice patients’ views on dying as relational. Sociology of Health & Illness, 35, 499–513.10.1111/shil.2013.35.issue-4
11. Broom, A., Kirby, E., & Good, P. (2012). Referral to specialist palliative care. Internal Medicine Journal, 42, 1040–1042.
12. Broom, A., Kirby, E., Good, P., Wootton, J., & Adams, J. (2012). Specialists’ experiences and perspectives on the timing of referral to palliative care: A qualitative study. Journal of Palliative Medicine, 15, 1248–1253.10.1089/jpm.2012.0264
13. Broom, A., Kirby, E., Good, P., Wootton, J., & Adams, J. (2013). The art of letting go: Referral to palliative care and its discontents. Social Science & Medicine, 78, 9–16.10.1016/j.socscimed.2012.11.008
14. Brown, R., Dunn, S., Byrnes, K., Morris, R., Heinrich, P., & Shaw, J. (2009). Doctors’ stress responses and poor communication performance in simulated bad-news consultations. Academic Medicine, 84, 1595–1602.
15. Charles, C., Gafni, A., & Whelan, T. (1997). Shared decision-making in the medical encounter: What does it mean? (Or it takes at least two to tango). Social Science & Medicine, 44, 681–692. doi:10.1016/S0277-9536(96)00221-310.1016/S0277-9536(96)00221-3
16. Charmaz, K. (2006). Constructing grounded theory. London: Sage.
17. Considine, J., & Miller, K. (2010). The dialectics of care: Communicative choices at the end of life. Health Communication, 25, 165–174. doi:10.1080/1041023090354495110.1080/10410230903544951
18. Cooper, L., Roter, D., Johnson, R., Ford, D., Steinwachs, D., & Powe, N. (2003). Patient-centered communication, ratings of care, and concordance of patient and physician race. Annals of Internal Medicine, 139, 907–915.10.7326/0003-4819-139-11-200312020-00009
19. Crandall, S., & Marion, G. (2009). Commentary: Identifying attitudes towards empathy: An essential feature of professionalism. Academic Medicine, 84, 1174–1176. doi:10.1097/ACM.0b013e3181b17b1110.1097/ACM.0b013e3181b17b11
20. Davidson, J. (2009). Family-centered care: Meeting the needs of patients’ families and helping families adapt to critical illness. Critical Care Nurse, 29, 28–34.10.4037/ccn2009611
21. Epstein, R., & Hundert, E. (2002). Defining and assessing professional competence. Journal of the American Medical Association, 287, 226–235. doi:10.1001/pubs.JAMA-ISSN-0098-7484-287-2-jrv1009210.1001/jama.287.2.226
22. Ezzy, D. (2002). Qualitative analysis. Australia: Allen and Unwin.
23. Friedman, B., Harwood, M., & Shields, M. (2002). Barriers and enablers to hospice referrals: An expert overview. Journal of Palliative Medicine, 5, 73–84. doi:10.1089/1096621025278503310.1089/10966210252785033
24. Friedrichsen, M., Strang, P., & Carlsson, M. (2000). Breaking bad news in the transition from curative to palliative cancer care – Patient’s view of the doctor giving the information. Supportive Care in Cancer, 8, 472–478. doi:10.1007/s005200000147
25. Frost, P., Dutton, J., Worline, M., & Wilson, A. (2000). Narratives of compassion in organizations. In S. Fineman (Ed.), Emotion in organizations (pp. 25–45). Thousand Oaks, CA: Sage.
26. Goffman, E. (1967). Interaction ritual: Essay on face-to-face behavior. Garden City, NY: Doubleday Anchor.
27. Goffman, E. (1976). The nature of deference and demeanor. American Anthropologist, 58, 473–502.
28. Graham, R. (2006). Lacking compassion: Sociological analyses of the medical profession. Social Theory and Health, 4, 43–63.
29. Grande, G., Stajduhar, K., Aoun, S., Toye, C., Funk, L., Addington-Hall, J., … Todd, C. (2009). Supporting lay carers in end of life care: Current gaps and future priorities. Palliative Medicine, 23, 339–344. doi:10.1177/026921630910487510.1177/0269216309104875
30. Gudykunst, W. (1997). Cultural variability in communication: An introduction. Communication Research, 24, 327–348. doi:10.1177/00936509702400400110.1177/009365097024004001
31. Harding, R., & Higginson, I. (2001). Working with ambivalence: Informal caregivers of patients at the end of life. Supportive Care in Cancer, 9, 642–645. doi:10.1007/s00520010028610.1007/s005200100286
32. Henbest, R., & Stewart, M. (1990). Patient-centredness in the consultation. 2: Does it really make a difference? Family Practice, 7, 28–33. doi:10.1093/fampra/7.1.2810.1093/fampra/7.1.28
33. Ho, A. (2008). Relational autonomy or undue pressure? Family’s role in medical decision-making. Scandinavian Journal of Caring Sciences, 22, 128–135. doi:10.1111/j.1471-6712.2007.00561.x10.1111/scs.2008.22.issue-1
34. Hochschild, A. (1979). Emotion work, feeling rules, and social structure. American Journal of Sociology, 85, 551–575.10.1086/ajs.1979.85.issue-3
35. Hochschild, A. (1983). The managed heart. Berkeley: UC Press.
36. Karnieli-Miller, O., & Eisikovits, Z. (2009). Physician as partner or salesman? Shared decision-making in real-time encounters. Social Science & Medicine, 69, 1–8. doi:10.1016/j.socscimed.2009.04.03010.1016/j.socscimed.2009.04.030
37. Kirby, E., Broom, A., Good, P., Wootton, J., & Adams, J. (in press). Medical specialists’ motivations for referral to specialist palliative care: A qualitative study. BMJ Supportive and Palliative Care. doi:10.1136/bmjspcare-2012-000376
38. Kleinman, A. (1980). Patients and healers in the context of culture. London: University of California Press.
39. Komesaroff, P., Norelle Lickiss, J., Parker, M., & Ashby, M. (1995). The euthanasia controversy: Decision making in extreme cases. The Medical Journal of Australia, 162, 594–597.
40. Kovacs, P., Hayden Bellin, M., & Fauri, D. (2006). Family-centered care. Journal of Social Work in End-of-Life & Palliative Care, 2, 13–27.
41. Laveist, T., & Nuru-Jeter, A. (2002). Is doctor–patient race concordance associated with greater satisfaction with care? Journal of Health and Social Behavior, 43, 296–306.10.2307/3090205
42. Levenstein, J., McCracken, E., McWhinney, I., Stewart, M., & Brown, J. (1986). The patient-centred clinical method. 1. A model for the doctor–patient interaction in family medicine. Family Practice, 3, 24–30. doi:10.1093/fampra/3.1.2410.1093/fampra/3.1.24
43. Levine, C., & Zuckerman, C. (1999). The trouble with families: Toward an ethic of accommodation. Annals of Internal Medicine, 130, 148–152.10.7326/0003-4819-130-2-199901190-00010
44. Levy, M. (2001). Making a personal relationship with death. In J. R. Curtis & G. Rubenfeld (Eds.), Managing death in the ICU (pp. 31–36). New York, NY: Oxford University Press.
45. Li, S., & Arber, A. (2006). The construction of troubled and credible patients: A study of emotion talk in palliative care settings. Qualitative Health Research, 16, 27–46. doi:10.1177/104973230528402210.1177/1049732305284022
46. Lo, B., Quill, T., & Tulsky, J. (1999). Discussing palliative care with patients. Annals of Internal Medicine, 130, 744–749.
47. Lutfey, K., & Maynard, D. (1998). Bad news in oncology: How physician and patient talk about death and dying without using those words. Social Psychology Quarterly, 61, 321–341.10.2307/2787033
48. Lynn-McHale, D., & Deatrick, J. (2000). Trust between family and health care provider. Journal of Family Nursing, 6, 210–230. doi:10.1177/10748407000060030210.1177/107484070000600302
49. Macdonald, R., Weeks, L., & McInnes-Perry, G. (2011). End-of-life healthcare decision-making: The intermediary role of the ethicist in supporting family caregivers and health professionals. Work, 40, 63–73.
50. May, C. (2007). The clinical encounter and the problem of context. Sociology, 41, 29–45. doi:10.1177/003803850707228210.1177/0038038507072282
51. McMillan, S., Small, B., Weitzner, M., Schonwetter, R., Tittle, M., Moody, L., … Haley, W. (2006). Impact of coping skills intervention with family caregivers of hospice patients with cancer. Cancer, 106, 214–222. doi:10.1002/cncr.2156710.1002/(ISSN)1097-0142
52. McNamara, B. (2004). Good enough death: Autonomy and choice in Australian palliative care. Social Science & Medicine, 58, 929–938. doi:10.1016/j.socscimed.2003.10.04210.1016/j.socscimed.2003.10.042
53. Mead, N., & Bower, P. (2000). Patient-centredness: A conceptual framework and review of the empirical literature. Social Science & Medicine, 51, 1087–1110. doi:10.1016/S0277-9536(00)00098-810.1016/S0277-9536(00)00098-8
54. Misch, D. (2002). Evaluating physiciansʼ professionalism and humanism. Academic Medicine, 77, 489–495.10.1097/00001888-200206000-00004
55. Mitchell, G. (2011). Palliative care in Australia. The Ochsner Journal, 11, 334–337.
56. Monroe, B., & Oliviere, D. (2009). Communicating with family carers. In P. Hudson & S. Payne (Eds.), Family carers in palliative care: A guide for health and social care professionals (pp. 1–20). New York, NY: Oxford University Press.
57. Nebel, S. (2011). Facing death together. Journal of Hospice & Palliative Nursing, 13, 419–425.10.1097/NJH.0b013e318229aad2
58. Quill, T., Arnold, R., & Back, A. (2009). Discussing treatment preferences with patients who want “everything”. Annals of Internal Medicine, 151, 345–349.10.7326/0003-4819-151-5-200909010-00010
59. Roter, D., & Hall, J. (1998). Why physician gender matters in shaping the physician–patient relationship. Journal of Women’s Health, 7, 1093–1097. doi:10.1089/jwh.1998.7.109310.1089/jwh.1998.7.1093
60. Schouten, B., & Meeuwesen, L. (2006). Cultural differences in medical communication: A review of the literature. Patient Education and Counseling, 64, 21–34.10.1016/j.pec.2005.11.014
61. Shapiro, J., & Saltzer, E. (1981). Cross-cultural aspects of physician–patient communication patterns. Urban Health, 10, 10–15.
62. Sharf, B., & Street, R. (1997). The patient as a central construct: Shifting the emphasis. Health Communication, 9, 1–11. doi:10.1207/s15327027hc0901_110.1207/s15327027hc0901_1
63. Shipman, C., Addington-Hall, J., Barclay, S., Briggs, J., Cox, I., Daniels, L., … Millar, D. (2002). How and why do GPs use specialist palliative care services? Palliative Medicine, 16, 241–246. doi:10.1191/0269216302pm534oa10.1191/0269216302pm534oa
64. Sinclair, S. (1997). Making doctors: An institutional apprenticeship. Oxford: Berg.
65. Skirbekk, H., Middelthon, A.-L., Hjortdahl, P., & Finset, A. (2011). Mandates of trust in the doctor–patient relationship. Qualitative Health Research, 21, 1182–1190. doi:10.1177/104973231140568510.1177/1049732311405685
66. Sleath, B., Rubin, R., & Arrey-Wastavino, A. (2000). Physician expression of empathy and positiveness to Hispanic and non-Hispanic White patients during medical encounters. Family Medicine, 32, 91–96.
67. Smith, A., & Kleinman, S. (1989). Managing emotions in medical school: Students’ contacts with the living and the dead. Social Psychology Quarterly, 52, 56–69.10.2307/2786904
68. Sparks, L., Villagran, M., Parker-Raley, J., & Cunningham, C. (2007). A patient-centered approach to breaking bad news: Communication guidelines for health care providers. Journal of Applied Communication Research, 35, 177–196. doi:10.1080/0090988070126299710.1080/00909880701262997
69. Stajduhar, K., Funk, L., Jakobsson, E., & Öhlén, J. (2010). A critical analysis of health promotion and ‘empowerment’ in the context of palliative family care-giving. Nursing Inquiry, 17, 221–230.10.1111/nin.2010.17.issue-3
70. Steinhauser, K., & Barroso, J. (2009). Using qualitative methods to explore key questions in palliative care. Journal of Palliative Medicine, 12, 725–730. doi:10.1089/jpm.2009.958010.1089/jpm.2009.9580
71. Stewart, M., Weston, W., Brown, J., McWhinney, I., McWilliam, C., & Freeman, T. (1995). Patient-centered medicine: Transforming the clinical method. Thousand Oaks, CA: Sage.
72. Street, R. (1991). Information-giving in medical consultations: The influence of patients’ communicative styles and personal characteristics. Social Science & Medicine, 32, 541–548.10.1016/0277-9536(91)90288-N
73. Street, R. (2002). Gender differences in health care provider–patient communication: Are they due to style, stereotypes, or accommodation? Patient Education and Counseling, 48, 201–206. doi:10.1016/S0738-3991(02)00171-410.1016/S0738-3991(02)00171-4
74. The, A.-M., Hak, T., Koeter, G., & van Der Wal, G. (2000). Collusion in doctor–patient communication about imminent death: An ethnographic study. British Medical Journal, 321, 1376–1381. doi:10.1136/bmj.321.7273.137610.1136/bmj.321.7273.1376
75. Thomas, C., Morris, S., & Harman, J. (2002). Companions through cancer. Social Science & Medicine, 54, 529–544. doi:10.1016/S0277-9536(01)00048-X10.1016/S0277-9536(01)00048-X
76. van Ryn, M., & Burke, J. (2000). The effect of patient race and socio-economic status on physicians’ perceptions of patients. Social Science & Medicine, 50, 813–828. doi:10.1016/S0277-9536(99)00338-X10.1016/S0277-9536(99)00338-X
77. Walsh, K., Jones, L., Tookman, A., Mason, C., McLoughlin, J., Blizard, R., & King, M. (2007). Reducing emotional distress in people caring for patients receiving specialist palliative care: Randomised trial. The British Journal of Psychiatry, 190, 142–147.10.1192/bjp.bp.106.023960
78. Willems, S., De Maesschalck, S., Deveugele, M., Derese, A., & De Maeseneer, J. (2005). Socio-economic status of the patient and doctor–patient communication: Does it make a difference? Patient Education and Counseling, 56, 139–146.10.1016/j.pec.2004.02.011