Talking about sensitive topics during the advance care planning discussion: A peek into the black box

2015 ◽  
Vol 13 (6) ◽  
pp. 1669-1676 ◽  
Author(s):  
Pernille Andreassen ◽  
Mette Asbjørn Neergaard ◽  
Trine Brogaard ◽  
Marianne Hjorth Skorstengaard ◽  
Anders Bonde Jensen
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Special Focus ◽  
Care Planning ◽  
Life Care ◽  
Sensitive Topics ◽  
Life Issues ◽  
Advance Care ◽  
End Of Life Issues

AbstractObjective:Advance care planning (ACP) discussions are emphasized as a valuable way of improving communication about end-of-life care. Yet we have very little knowledge of what goes on during actual ACP discussions. The aim of our study was to explore how the sensitive topics of end-of-life decisions are addressed in concrete ACP discussions, with special focus on doctor–patient interactions.Method:Following a discourse-analysis approach, the study uses the concept of doctor and patient “voices” to analyze 10 directly observed and audiotaped ACP discussions among patients, relatives, and a physician, carried out in connection with a pilot study conducted in Denmark.Results:Previous studies of directly observed patient–physician discussions about end-of-life care show largely ineffective communication, where end-of-life issues are toned down by healthcare professionals, who also tend to dominate the discussions. In contrast, the observed ACP discussions in our study were successful in terms of addressing such sensitive issues as resuscitation and life-prolonging treatment. Our analysis shows that patients and relatives were encouraged to take the stage, to reflect, and to make informed choices. Patients actively explored different topics and asked questions about their current situation, but some also challenged the concept of ACP, especially the thought of being able to take control of end-of-life issues in advance.Significance of Results:Our analysis indicates that during discussions about sensitive end-of-life issues the healthcare professional will be able to pose and explore sensitive ACP questions in a straightforward manner, if the voices that express empathy and seek to empower the patient in different ways are emphasized.

Uptake and implementation of Advance Care Planning in Australia: findings of key informant interviews

2012 ◽  
Vol 36 (1) ◽  
pp. 98 ◽  
Author(s):  
Joel J. Rhee ◽  
Nicholas A. Zwar ◽  
Lynn A. Kemp
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
Health Professionals ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Care Plans ◽  
Life Issues ◽  
Advance Care ◽  
End Of Life Issues

Objective. Advance Care Planning (ACP) has an important role in enhancing patient autonomy and guiding end-of-life care. However, there is low uptake of ACP and evidence that advance care plans are often not implemented. We explored these issues in interviews with expert clinicians and representatives of key stakeholder organisations with interest in end-of-life care. Method. Qualitative descriptive study of semi-structured telephone interviews with 23 participants. Results. Participants thought that the low uptake of ACP in Australia is a result of inadequate awareness, societal reluctance to discuss end-of-life issues, and lack of health professionals’ involvement in ACP. Problems in implementation of advance care plans were thought to be a result of problems in accessing ACP documents; interpreting written documents; making binding decisions for future unpredictable situations; and paternalistic attitudes of health professionals and families. Participants had different perspectives on how advance care plans should be implemented, with some believing in strict implementation, whereas others believed in a more flexible approach. Implications. Low uptake and poor implementation of advance care plans may be addressed by (1) increasing community awareness; (2) encouraging health professional involvement; and (3) system-wide implementation of multi-faceted interventions. A patient-centred approach to ACP is required to resolve the differences in views on how advance care plans should be implemented. What is known about the topic? Advance Care Planning (ACP) has been gaining prominence in Australia for its role in enhancing a patient’s autonomy and as an important component of good end-of-life care. Evidence from overseas and a limited number of Australian studies have identified several problems with ACP. First, the uptake of ACP seems to be low. Second, even when ACP process takes place, the resultant plans are often not implemented and make little effect on delivery of end-of-life care. What does this paper add? This paper confirms that the uptake of ACP is limited in Australia and is a result of inadequate awareness, societal reluctance to discuss end-of-life issues, and lack of health professionals’ involvement in ACP. Problems in implementation of advance care plans may be because of problems in: accessing ACP documents, interpreting written documents, making binding decisions for future unpredictable situations, and paternalistic attitudes of health professionals and families. This paper also shows that there are different perspectives in how advance care plans should be implemented, with some believing in strict implementation, whereas others believed in a more flexible approach. What are the implications for practitioners? This paper outlines several ways in which problems in the uptake and implementation of advance care plans may be addressed. This involves (1) increasing community awareness; (2) encouraging health professional involvement in ACP; and (3) system-wide implementation of multi-faceted interventions in ACP. Our findings also suggest that there needs to be a shift from a one-size-fits-all approach to implementing advance care plans to a more flexible patient-centred approach. This approach could ensure that a patient’s autonomy and right to self-determination are adequately protected, while also catering to the needs of those requiring more flexible approaches to end-of-life decision-making.

scholarly journals Unraveling the Effects of Social Class and Systemic Racism on Advance Care Planning

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 472-472
Author(s):  
Jenny McDonnell
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Black Americans ◽  
Low Ses ◽  
Care Planning ◽  
Life Care ◽  
Black And White ◽  
Advance Care ◽  
Using Data

Abstract While advance care planning (ACP) is recognized as a key facilitator of high-quality, goal-concordant end-of-life care, black Americans are less likely to participate in ACP than non-Hispanic whites (Carr 2011; Detering et al. 2010). There are divided explanations for why these disparities persist. Some scholars attribute racial disparities in end-of-life care to socioeconomic (SES) differences between black and white Americans citing blacks’ and whites’ differentiated access to, control over, and use of material resources (Wilson 1978; Yearby 2011). Others assert that health care preferences do not solely reflect lack of resources or health literacy, but that the larger social context frames care preferences differently across racial and ethnic groups in American society (Alegria et al. 2011; Sewell and Pingel forthcoming). By turning the analytical lens to class-privileged black Americans, I investigate whether racism overflows the margins of class disadvantage. Using data from the Health and Retirement Study, I ran logistic regression and moderation models. I found that class-privileged blacks are less likely to engage in ACP than both high-SES and low-SES whites. The interaction of race and SES was negatively and significantly associated with ACP (OR=0.91; P<0.05), indicating that SES has a stronger effect on the probability of ACP among whites than among blacks. Predicted probabilities show that 51% of low-SES whites are likely to engage in ACP compared to 32% of high-SES blacks. These findings indicate that racialized disparities in ACP exist independent of SES, and that the effects of SES and race are intersectional rather than simply additive.

545: END-OF-LIFE CARE FOR CHILDREN WITH MEDICAL COMPLEXITY: DOES ADVANCE CARE PLANNING MATTER?

2016 ◽  
Vol 44 (12) ◽  
pp. 213-213
Author(s):  
Danielle DeCourcey ◽  
Melanie Silverman ◽  
Adeolu Oladunjoye ◽  
Joanne Wolfe
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Children With Medical Complexity ◽  
Medical Complexity ◽  
Advance Care

Advance care planning and end-of-life care in a network of rural Western Australian hospitals

2015 ◽  
Vol 23 (4) ◽  
pp. 195-200 ◽  
Author(s):  
Kirsten Auret ◽  
Craig Sinclair ◽  
Barbara Averill ◽  
Sharon Evans
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Advance Care ◽  
Western Australian

13 Exploring patient safety incidents arising from advance care planning for end of life patients: a mixed methods analysis of incident reports

2018 ◽  
Vol 8 (3) ◽  
pp. 364.2-365 ◽  
Author(s):  
Toby Dinnen ◽  
Huw Williams ◽  
Simon Noble ◽  
Adrian Edwards ◽  
Joyce Kenkre ◽  
...  
Keyword(s):  
Systematic Review ◽  
Patient Safety ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Advance Care ◽  
Incident Reports ◽  
Patient Safety Incidents

IntroductionAdvance Care Planning (ACP) is an important component of patient centred end-of-life care (Houben et al. 2014; Brinkman-Stoppelenburg et al. 2014). However there is little evidence available on the safety of the process and its impact on quality of care.AimTo characterise the nature of patient safety incidents arising around the ACP process for patients approaching end-of-life.MethodThe National Reporting and Learning System (NRLS) collates patient safety incident reports across England and Wales. We performed a keyword search and manual review to identify relevant reports between 2005 and 2015. A mixed methods process combining structured data coding and exploratory descriptive analysis was undertaken to describe incidents underlying causes and outcomes. A thematic analysis identified areas on which to focus improvement initiatives.ResultsWe identified 67 incident reports in which patients experienced inadequate care due to issues with implementation of ACP. The most common source of error was (mis)communication of ACP (n=27) where documentation was lost or verbal handover was inaccurate. Over one third of reports (n=24) described an ACP not being followed. In the remaining reports (n=16) an ACP was not completed despite being appropriate. The most common contributory factor was inadequate staff knowledge (n=18). Common outcomes were cardiopulmonary resuscitation attempts contrary to a patient’s wishes (n=18). Other outcomes included inappropriate treatment or transfer/admission.ConclusionOur national level analysis identifies key priorities which should be explored in local contexts: specifically improving public and staff understanding and engagement with ACP and developing systems for recording and accessing ACP documentation across healthcare services.References. Brinkman-Stoppelenburg A, Rietjens JA, Van Der Heide A. The effects of advance care planning on end-of-life care: A systematic review. Palliative Medicine2014;28:1000–25.. Houben CH, Spruit MA, Groenen MT, Wouters EF, Janssen DJ. Efficacy of advance care planning: A systematic review and meta-analysis. Journal of the American Medical Directors Association2014;15:477–89.

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