A qualitative analysis of responses to a question prompt list and prognosis and end‐of‐life care discussion prompts delivered in a communication support program

Psycho-Oncology - Tập 24 Số 3 - Trang 287-293 - 2015
Adam Walczak1, Inge Henselmans2, Martin H.N. Tattersall1, Josephine M. Clayton1,3, Patricia M. Davidson4, Jane Young5, Frances Bellemore1, Ronald M. Epstein6, Phyllis Butow1
1Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), The University of Sydney, Sydney, Australia
2Academic Medical Center, University of Amsterdam, Amsterdam, the Netherlands
3HammondCare Palliative and Supportive Care Service, Greenwich Hospital, Greenwich, NSW, 2065 USA
4Cardiovascular and Chronic Care Centre, University of Technology, Sydney, Australia
5School of Public Health, University of Sydney, Sydney, Australia
6Department of Family Medicine, University of Rochester Medical Centre, New York, NY, USA

Tóm tắt

AbstractObjectiveDiscussing end‐of‐life (EOL) care is challenging when death is not imminent, contributing to poor decision‐making and EOL quality‐of‐life. A communication support program (CSP) targeting these issues may facilitate discussions. We aimed to qualitatively explore responses to a nurse‐led CSP, incorporating a question prompt list (QPL—booklet of questions patients/caregivers can ask clinicians), promoting life expectancy and EOL‐care discussions.MethodsParticipants met a nurse‐facilitator to explore an EOL‐focussed QPL. Prognosis and advance care planning (ACP) QPL content was highlighted. Thirty‐one transcribed meetings were analysed using thematic text analysis before reaching data saturation.ResultsThirty‐one advanced cancer patients (life expectancy <12 months) and 11 family caregivers were recruited from six medical oncology clinics in Sydney, Australia. Intent to use the QPL related to information needs, involvement in care and readiness to discuss EOL issues. Many participants did not want life expectancy estimates, citing unreliable estimates, unknown treatment outcomes, or coping by not looking ahead. Most displayed interest in ACP, often motivated by a loved one's EOL experiences, clear treatment preferences, concerns about caregivers or recognition that ACP is valuable regardless of life expectancy. Timing emerged as a reason not to discuss EOL issues; many maintaining it was too early.ConclusionPatients and caregivers appear ambivalent about acknowledging approaching death by discussing life expectancy but value ACP. Given heterogeneity in responses, individualised approaches are required to guide EOL discussion conduct and content. Further exploration of the role of prognostic discussion in ACP is warranted. Copyright © 2014 John Wiley & Sons, Ltd.

Từ khóa


Tài liệu tham khảo

10.1001/archinternmed.2008.587

10.1001/jama.300.14.1665

Heyland DK, 2009, Discussing prognosis with patients and their families near the end‐of‐life: Impact on satisfaction with end‐of‐life care, Open Med, 3, e101

10.1136/bmj.c1345

Advance care planning: goals of care designation (inc. resuscitation – adult) Policy 2008.http://www.calgaryhealthregion.ca/policydb/ShowPolicy?policy_id=1635[Accessed 20 May 2012].

Using advance care directives – New South Wales.http://www0.health.nsw.gov.au/pubs/2004/pdf/adcaredirectives.pdf[Accessed 26 July 2013].

10.7326/0003-4819-134-12-200106190-00009

Buiting HM, 2011, Understanding provision of chemotherapy to patients with end stage cancer: qualitative interview study, Brit Med J, 342, d1933

10.1016/j.pec.2011.08.009

10.1136/bmj.321.7273.1376

10.7326/0003-4819-156-3-201202070-00008

10.1089/jpm.2006.2543

10.1056/NEJMoa1204410

10.1002/cncr.23543

10.1038/sj.bjc.6601380

10.1200/JCO.2006.06.7827

10.1016/S0885-3924(02)00686-3

Clayton JM, 2007, Clinical practice guidelines for communicating prognosis and end‐of‐life issues with adults in the advanced stages of a life‐limiting illness, and their caregivers, Med J Aust, 186

10.1136/bmjopen‐2014‐005745

10.1037/0003-066X.55.1.68

Ryan RM, 2008, Facilitating health behaviour change and its maintenance: Interventions based on self‐determination theory, Eur Health Psychol, 10, 2

10.1177/0269216313483659

Miles MB, 1994, Qualitative data analysis: an expanded sourcebook

Bernard HR, 1998, Handbook of methods in cultural anthropology, 595

Creswell J, 1988, Qualitative inquiry and research design: choosing among five traditions

Lewis RB, 1998, ATLAS/ti and NUD‐IST: a comparative review of two leading qualitative data analysis packages, Cult Anthropol Methods, 10, 41

Morse JM, 2002, Verification strategies for establishing reliability and validity in qualitative research, IJQM, 1, 1

10.1002/pon.1955

Robinson CA, 2012, Our best hope is a cure. Hope in the context of advance care planning, Palliat Support Care, 24, 1

10.1093/geront/gns051

10.1200/JCO.2004.04.095

10.1046/j.1532-5415.2003.51457.x

10.1177/1088868309352321

Yalom ID, 1980, Existential psychotherapy

10.1016/S0738-3991(03)00079-X

10.1002/pon.1051

10.1007/978-1-4684-1042-6_8

10.1111/j.1525-1497.2005.0151.x

Ngo‐Metzger Q, 2008, End‐of‐life care: guidelines for patient‐centred communication, Am Fam Physician, 77, 167

10.1097/00003246-200102001-00010