Advance care planning discussions in advanced cancer: Analysis of dialogues between patients and care planning mediators

Abstract

This article reports on the recorded content of ACP discussions. The extent to which patients want to engage in ACP is variable, and support and training are needed for health professionals to initiate such discussions. Our findings do not fully support the current United Kingdom policy of introducing ACP early in life-threatening disease.

Care and communication between health professionals and patients affected by severe or chronic illness in community care settings: a qualitative study of care at the end of life

“…Patients are pragmatic, also, about their options and how these depend on the circumstances that materialise. 6,22,43,50,51,[67][68][69][70][71][72][73] Running like a leitmotif throughout the literature is that patients strongly desire not to impose a burden of care on their family members 5,22,69,[73][74][75][76][77][78][79] and it is evident that most people depend on the availability and willingness of informal carers to support their ability to die at home. 69,73,80 As the population ages, increasing numbers of the very old live alone and may not have carers available to help.…”

“…9,12,53,64,67,89 Evidence also suggests that, although patients tend to expect professionals to take the initiative, there is a tendency for professionals to wait for patients to open the discussion. 5,43,87,90 As a result of this 'bystander effect' it is likely that the discussion never happens, or may occur too late, often in response to critical events, by which time options are restricted. 9,12,14 Reviews of patient preferences regarding discussion of end of life issues indicate they vary but tend towards an expressed desire for honesty and information.…”

“…4 However, it is apparent that ACP remains uncommon in most areas of professional practice and that both professionals and patients tend to avoid discussions they find difficult. [5][6][7][8][9][10][11][12][13][14] Patient and family responses to ACP and its effect on EOLC outcomes remain poorly understood. This study contributes to the currently limited evidence relating to the nature and impact of ACP as well as a critical appraisal of its contribution within current EOLC policy.…”

Investigation of Cancer Patients’ Information Sources, Information Needs and Expectations of Health Professionals

“…Yapılan önceki çalışmalarda da sağlık personelinin kanser hastalarıyla iletişimlerinin yetersiz olduğu, yeterli zaman ayırmadıkları ve iletişimi engelleyen hasta ve sağlık personelinden kaynaklı sorunlar olduğu saptanmıştır. [17,20,30] Nelson ve ark. (2011) doktorların emosyonel belirtileri tartışma, tedaviyle ilgili gereksinimler, manevi konular, hayata hazırlanma, yaşam desteği ve bakımevi konularında kanser hastaları ile çok az ya da hiç iletişime geçmediklerini bulmuştur.…”

“…[7][8][9] Kanser hastaları bu süreçte yeterince bilgilendirilmek ve karar verme sorumluluğunu almak istemelerine rağmen yeterli bilgi ve yanıt alamamaktadırlar. [10,11] Hastalar en fazla tanı, tedavi, [8,10,12,13] testler, [10,14] cerrahi, [10] hastalığın etkileri [12,15,16] hastalık, prognoz, [10,17,18] duygusal ve sosyal konular, [14] fiziksel bakım, [14] bakım alabilecekleri yer ve gelecekteki bakım kararları, [17] hakkında bilgi almak istemektedirler. Tedaviyle ilişkili fiziksel ve sosyal sorunları, tekrarlama riskinden dolayı korku, anksiyete ve depresyon gibi duygusal sıkıntıları bilmek istemektedirler.…”