Readiness to participate in advance care planning: A qualitative study of renal failure patients, families and healthcare providers

2017 ◽  
Vol 13 (3) ◽  
pp. 171-187 ◽  
Author(s):  
Lauren A Hutchison ◽  
Donna S Raffin-Bouchal ◽  
Charlotte A Syme ◽  
Patricia D Biondo ◽  
Jessica E Simon
Keyword(s):  
Renal Failure ◽  
End Of Life ◽  
Advance Care Planning ◽  
Healthcare Providers ◽  
Care Planning ◽  
Structured Interviews ◽  
Individual Values ◽  
Advance Care ◽  
The Moment ◽  
End Of Life Decision

Objectives Advance care planning is the process by which people reflect upon their wishes and values for healthcare, discuss their choices with family and friends and document their wishes. Readiness represents a key predictor of advance care planning participation; however, the evidence for addressing readiness is scarce within the renal failure context. Our objectives were to assess readiness for advance care planning and barriers and facilitators to advance care planning uptake in a renal context. Methods Twenty-five participants (nine patients, nine clinicians and seven family members) were recruited from the Southern Alberta Renal Program. Semi-structured interviews were recorded, transcribed and then analyzed using interpretive description. Results Readiness for advance care planning was driven by individual values perceived by a collaborative encounter between clinicians and patients/families. If advance care planning is not valued, then patients/families and clinicians are not ready to initiate the process. Patients and clinicians are delaying conversations until “illness burden necessitates,” so there is little “advance” care planning, only care planning in-the-moment closer to the end of life. Discussion The value of advance care planning in collaboration with clinicians, patients and their surrogates needs reframing as an ongoing process early in the patient’s illness trajectory, distinguished from end-of-life decision making.

Advance Care Planning

2019 ◽  
pp. 79-86
Author(s):  
Shigeko Izumi
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
Healthcare Providers ◽  
Care Planning ◽  
Life Care ◽  
Advance Care ◽  
Life Values ◽  
End Of Life Decision ◽  
Life Decision

Many patients and their families arrive at critical end-of-life decision-making ill-prepared, without any prior conversations about what the patient wants. Advance care planning is a process by which to reflect on and discuss a person’s life values and goals and to communicate preferences regarding future healthcare. The purpose is to ensure that people receive care that is consistent with their values, goals, and preferences at the end of their lives. The role of healthcare professionals is to support and encourage persons at any age or stage of health to begin these conversations to share their values and preferences with their families, friends, and healthcare providers so that their end-of-life care wishes are honored.

The implications of the Mental Capacity Act (MCA) 2005 for advance care planning and decision making

2018 ◽  
Author(s):  
Simon Chapman ◽  
Ben Lobo
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Advance Care Planning ◽  
Care Planning ◽  
Best Interest ◽  
Policy And Practice ◽  
Advance Care ◽  
Current Context ◽  
Mental Capacity Act ◽  
End Of Life Decision

This chapter provides an overview of the MCA’s impact on end-of-life care. It situates the MCA in the current context of policy and practice. It describes how the MCA can be used to improve care, enable people to express and protect choices, and empower and enable the professional and/or the proxy decision maker. It also presents an introduction and explanation of the role of the IMCA and how it might apply to advance care planning (ACP) and end of life decision making, and an explanation of the legal and ethical process involved in reaching best interest decisions, especially for potentially vulnerable people in care homes and other settings.

Health and death literacy and cultural diversity: insights from hospital-employed interpreters

2017 ◽  
Vol 10 (1) ◽  
pp. e8-e8 ◽  
Author(s):  
Barbara Hayes ◽  
Anne Marie Fabri ◽  
Maria Coperchini ◽  
Rafatullah Parkar ◽  
Zoe Austin-Crowe
Keyword(s):  
End Of Life ◽  
Qualitative Description ◽  
Cultural Issues ◽  
Structured Interviews ◽  
Individual Values ◽  
Language Groups ◽  
A Value ◽  
Values And Beliefs ◽  
Advance Care ◽  
End Of Life Decision

Objectives001225The aim of this qualitative study is to better understand, through the experiences and insights of hospital interpreters, how people from culturally and linguistic diverse (CALD) communities might respond to advance care planning (ACP) and end-of-life discussions.MethodsHospital interpreters from five Melbourne metropolitan health services were recruited for in-depth semi-structured interviews that explored the question, ‘What can be learnt from hospital interpreters about cultural issues related to ACP and end-of-life decision-making?’ Thirty-nine interpreters, representing 22 language groups, were interviewed. Analysis of the transcribed interviews used qualitative description.ResultsThematic analysis identified three major themes: (1) moral difference; (2) health and death literacy; and (3) diversity within culture.ConclusionA value-based approach to ACP is recommended as a way to capture the person’s individual values and beliefs. Health and death literacy have been identified as areas that may be over-estimated; areas that can be addressed and improved, if recognised. Health and death literacy is a particular area that needs to be assessed and addressed as a pre-requisite to ACP discussions.

Process and impact of an advance care planning intervention evaluated by bereaved surrogate decision-makers of dialysis patients

2016 ◽  
Vol 31 (3) ◽  
pp. 267-274 ◽  
Author(s):  
Mi-Kyung Song ◽  
Maureen Metzger ◽  
Sandra E Ward
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Advance Care Planning ◽  
Care Planning ◽  
Dialysis Patients ◽  
Advance Care ◽  
Surrogate Decision ◽  
End Of Life Decision ◽  
Life Decision ◽  
Planning Intervention

Background: Few studies have examined the process and impact of an advance care planning intervention experienced by surrogate decision-makers of dialysis patients. Aim: To explore the perspectives of the bereaved surrogates of dialysis patients on the process and impact of an advance care planning intervention and to compare the perceived impacts of the intervention between African Americans and Whites. Design: Qualitative interviews and thematic analysis. Setting/participants: 24 bereaved surrogates of patients from outpatient dialysis centers were interviewed. Both patients and surrogates had been participants in a larger efficacy study and had received an advance care planning intervention, SPIRIT (Sharing Patient’s Illness Representations to Increase Trust). Results: Two themes related to the process of SPIRIT were as follows: (1) SPIRIT provided a welcome opportunity to think about and discuss topics that had been avoided and (2) SPIRIT helped patients and surrogates to share their feelings. Four themes of the SPIRIT’s impact were as follows: (1) SPIRIT was an eye-opening experience, acquiring knowledge and understanding of the patient’s illness and end-of-life care, (2) SPIRIT helped strengthen relationships between patients and surrogates, (3) SPIRIT helped surrogates feel prepared during the time leading up to end-of-life decision-making, and (4) SPIRIT helped surrogates have peace of mind during and after actual end-of-life decision-making. Themes related to SPIRIT’s impact on feeling prepared for end-of-life decision-making and the actual decision-making experience more frequently occurred in African Americans than in Whites. Conclusion: Our data may help explain the beneficial effects of SPIRIT on surrogates, but future trials should include data on control surrogates’ perspectives.

scholarly journals End of Life Decision-Making Challenges in a Latino Patient with COVID-19: Facing Barriers

2021 ◽  
Vol 7 ◽  
pp. 233372142110217
Author(s):  
Irma Huayanay ◽  
Celia Pantoja ◽  
Chelsea Chang
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Advance Care Planning ◽  
Level Of Care ◽  
Care Planning ◽  
End Of Life Decisions ◽  
Primary Level ◽  
Advance Care ◽  
End Of Life Decision ◽  
Life Decision

COVID-19 pandemic brought difficult scenarios that patients and families are facing about end- of-life decisions. This exposed some weak areas in the healthcare system where we can continue improve in reducing disparities and emphasizing advance care planning from a primary level of care. We present a case of challenges in end-of-life decision-making in a Latino patient.

Narrative Medicine for Healthcare Providers: Improving Practices of Advance Care Planning

2021 ◽  
pp. 003022282110155
Author(s):  
Cara L. Wallace ◽  
April Trees ◽  
Jennifer Ohs ◽  
Leslie Hinyard
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
Healthcare Providers ◽  
Narrative Medicine ◽  
Treatment Preferences ◽  
Active Listening ◽  
Care Planning ◽  
Personal Experiences ◽  
Advance Care ◽  
The Relationship

Advance care planning (ACP) conversations about treatment preferences and end-of-life goals relate to positive outcomes for patients and families, though ongoing barriers exist. Additionally, providers personal discomfort and personal experiences may influence how they engage (or avoid) ACP conversations. Narrative medicine (NM) offers one approach to help practitioners develop ability to hear and understand the story of others in ways that may overcome barriers to quality conversations. This study investigated the effectiveness of a 3-hour NM workshop to develop communication skills around ACP and facilitate reflection on the relationship between personal experiences and professional practices in ACP and end-of-life care. Twenty-five participants completed post-assessments of the workshop. Key themes included increased awareness, improved skills for active listening and eliciting stories, and improved understanding of how personal experiences shape professional practice. Results indicate practitioners value the NM approach to ACP suggesting this approach may provide impactful change in practice.

scholarly journals Facilators and Barriers to Advance Care Planning Engagement among Chronic Kidney Patients in Taiwan

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 777-777
Author(s):  
YuHsuan (Olivia) Wang ◽  
Susan Enguidanos
Keyword(s):  
Kidney Disease ◽  
End Of Life ◽  
Advance Care Planning ◽  
Critical Role ◽  
Care Team ◽  
Care Planning ◽  
Theory Approach ◽  
Structured Interviews ◽  
Advance Care

Abstract End-Stage Renal Disease (ESRD) patients experience high rates of cognitive impairment and lower quality of life at end of life. Having an advance care planning (ACP) conversation is associated with better care at end of life and improved care consistency with patient preferences. Taiwan ranks highest in ESRD and dialysis incidence worldwide, highlighting the importance of ACP among this population. Since 2019, the Patient Autonomy Act entitled Taiwanese to engage in ACP, but strategies to promote its uptake and the role of healthcare providers and caregivers in ACP conversations remains unclear. This study aimed to investigate facilitators and barriers to ACP engagment among Taiwanese with kidney disease and their caregivers. In 2020, we recruited 18 adults with stage 3—5 kidney disease and their caregivers. We conducted semi-structured interviews to elicit knowledges and perspectives on ACP. A grounded theory approach was used to guide the analysis of primary themes. Two researchers independently coded the transcripts and met to reconcile codes. The primary barrier to ACP was the misconception that it equated to funeral arrangements. Themes related to ACP facilitators included: trust in the nephrology care team (especially in case managers); straighforward communication; and in-person consultations. Additionally, transplant patients were more likely to have ACP discussions with their loved ones. While kidney disease patients preferred straightforward communication, caregivers preferred indirect communications. These findings emphasize the critical role of the nephrological care team members. Improving knowledge of ACP and facilitating communication between caregivers and kidney disease patients in Taiwan is needed.

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