scholarly journals Couples affected by dementia and their experiences of advance care planning: a grounded theory study

2018 ◽  
Vol 40 (2) ◽  
pp. 439-460 ◽  
Author(s):  
Tony Ryan ◽  
Jane McKeown
Keyword(s):  
Grounded Theory ◽  
End Of Life ◽  
Advance Care Planning ◽  
Care Planning ◽  
Policy And Practice ◽  
Global Policy ◽  
Formal Service ◽  
People With Dementia ◽  
Advance Care ◽  
End Of Life Issues

AbstractGlobal policy places emphasis on the implementation and usage of advance care planning (ACP) to inform decision making at the end of life. For people with dementia, where its use is encouraged at the point of diagnosis, utilisation of ACP is relatively poor, particularly in parts of Europe. Using a constructivist grounded theory methodology, this study explores the ways in which co-residing couples considered ACP. Specifically, it seeks to understand the ways in which people with dementia and their long-term co-residing partners consider and plan, or do not plan, for future medical and social care. Sixteen participants were interviewed. They identified the importance of relationships in the process of planning alongside an absence of formal service support and as a result few engaged in ACP. The study recognises the fundamental challenges for couples in being obliged to consider end-of-life issues whilst making efforts to ‘live well’. Importantly, the paper identifies features of the ACP experience of a relational and biographical nature. The paper challenges the relevance of current global policy and practice, concluding that what is evident is a process of ‘emergent planning’ through which couples build upon their knowledge of dementia, their networks and relationships, and a number of ‘tipping points’ leading them to ACP. The relational and collective nature of future planning is also emphasised.

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.

scholarly journals Which moral barriers and facilitators do physicians encounter in advance care planning conversations about the end of life of persons with dementia? A meta-review of systematic reviews and primary studies

BMJ Open ◽  
2020 ◽  
Vol 10 (11) ◽  
pp. e038528
Author(s):  
Angela JJM Keijzer-van Laarhoven ◽  
Dorothea P Touwen ◽  
Bram Tilburgs ◽  
Madelon van Tilborg-den Boeft ◽  
Claudia Pees ◽  
...  
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
Advance Care Planning ◽  
Systematic Reviews ◽  
Moral Dilemmas ◽  
Barriers And Facilitators ◽  
Care Planning ◽  
People With Dementia ◽  
Meta Review ◽  
Advance Care

Importance and objectiveConducting advance care planning (ACP) conversations with people with dementia and their relatives contributes to providing care according to their preferences. In this review, we identify moral considerations which may hinder or facilitate physicians in conducting ACP in dementia.DesignFor this meta-review of systematic reviews and primary studies, we searched the PubMed, Web of Science and PsycINFO databases between 2005 and 30 August 2019. We included empirical studies concerning physicians’ moral barriers and facilitators of conversations about end-of-life preferences in dementia care. The protocol was registered at Prospero (CRD42019123308).Setting and participantsPhysicians and nurse practitioners providing medical care to people with dementia in long-term and primary care settings. We also include observations from patients or family caregivers witnessing physicians’ moral considerations.Main outcomesPhysicians’ moral considerations involving ethical dilemmas for ACP. We define moral considerations as the weighing by the professional caregiver of values and norms aimed at providing good care that promotes the fundamental interests of the people involved and which possibly ensues dilemmas.ResultsOf 1347 studies, we assessed 22 systematic reviews and 51 primary studies as full texts. We included 11 systematic reviews and 13 primary studies. Themes included: (1) beneficence and non-maleficence; (2) respecting dignity; (3) responsibility and ownership; (4) relationship and (5) courage. Moral dilemmas related to the physician as a professional and as a person. For most themes, there were considerations that either facilitated or hindered ACP, depending on physician’s interpretation or the context.ConclusionsPhysicians feel a responsibility to provide high-quality end-of-life care to patients with dementia. However, the moral dilemmas this may involve, can lead to avoidant behaviour concerning ACP. If these dilemmas are not recognised, discussed and taken into account, implementation of ACP as a process between physicians, persons with dementia and their family caregivers may fail.

scholarly journals Relating to the end of life through advance care planning: Expectations and experiences of people with dementia and their family caregivers

Dementia ◽  
2022 ◽  
pp. 147130122110663
Author(s):  
Natashe Lemos Dekker ◽  
Sascha R Bolt
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Fine Tuning ◽  
Care Planning ◽  
Life Care ◽  
People With Dementia ◽  
Advance Care ◽  
Life Care Planning

Background Dementia is widely considered a progressive condition associated with changes in cognitive capacities, which promotes the idea that people with dementia need to anticipate end-of-life care preferences. There is a growing body of interventions meant to support advance care planning (ACP) for people with dementia and their families. However, a deeper understanding of their experiences and expectations regarding planning the end of life is needed to inform ethically sound and person-centered ACP. This study explores how end-of-life care planning for people with dementia is experienced and perceived in practice. Methods We conducted a secondary analysis of qualitative data from in-depth interviews and ethnographic fieldwork. Participants included people with dementia living in the community or in nursing homes, family caregivers, and professional caregivers. During reflective sessions, the researchers moved back and forth between their original data and overarching topics related to ACP. Both performed deductive coding to filter relevant information from their data. Ongoing discussions allowed for the fine-tuning of themes. Results End-of-life care planning for people with dementia can encompass a paradox of control. While it may foster a sense of being in control, it may also feel like relinquishing control over future situations. It raises concerns regarding responsibility, as present, former and future wishes may not align. Family caregivers are often responsible for concrete end-of-life decision-making, prompting them to weigh previous wishes against present situations. Further, people with dementia may wish to focus on the present and distance themselves from the future. Discussion Advance decisions about end-of-life care are often decontextualized and people may find it difficult to oversee their future conditions and preferences. The widely recognized purpose of ACP to exert control over end-of-life care may need revision to match the needs of people with dementia while they are coping with their condition and an uncertain future.

scholarly journals Goals of Care Conversations and Subsequent Advance Care Planning Outcomes for People with Dementia

2021 ◽  
Vol 83 (4) ◽  
pp. 1767-1773
Author(s):  
Heather Ma ◽  
Rachel E. Kiekhofer ◽  
Sarah M. Hooper ◽  
Sarah Dulaney ◽  
Katherine L. Possin ◽  
...  
Keyword(s):  
End Of Life ◽  
Advance Directives ◽  
Advance Care Planning ◽  
Perceived Usefulness ◽  
Care Planning ◽  
Goals Of Care ◽  
People With Dementia ◽  
Advance Care ◽  
End Of Life Decision ◽  
The Impact

Background: Advance care planning has been shown to improve end of life decision-making for people with dementia. However, the impact of goals of care conversations between people with dementia and their caregivers has not been characterized. Objective: In this study, we evaluate the association between goals of care conversations and advance care planning outcomes. Methods: Retrospective advance care planning measures were collected via a questionnaire administered to 166 caregivers after the death of the person with dementia for whom they provided care. Results: At time of death, the majority of decedents with dementia had advance directives, health care agents, and previous goals of care conversations with their caregiver. Goals of care conversations were significantly associated with the perceived usefulness of advance directives, the perceived adherence to advance directives, and decedent dying at their desired place of death, but not with disagreements around end-of-life care. Conclusion: Our findings suggest that goals of care conversations are an important component of advance care planning. These findings support the development of interventions that facilitate such conversations between people with dementia and their caregivers.

Advance Care Planning and End of Life Decision Making

2016 ◽  
Author(s):  
Lauren Jodi Van Scoy ◽  
Michael Green ◽  
Benjamin Levi
Keyword(s):  
End Of Life ◽  
Advance Directives ◽  
Advance Care Planning ◽  
Stages Of Change ◽  
Public Engagement ◽  
Care Planning ◽  
Institute Of Medicine ◽  
Life Issues ◽  
Advance Care ◽  
End Of Life Issues

Advance care planning (ACP) is defined by the Institute of Medicine as an iterative process that involves discussing end-of-life issues, clarifying relevant values and goals of care, and embodying preferences through written documents and medical orders. ACP is predicated on the principle of respect for autonomy, which recognizes an individual’s right to accept or decline medical therapies. With the development of medical technologies that can sustain life (including mere physiologic existence), effective ACP has become a critical yet underused process for patients, their families, and clinicians. This review discusses the emergence of ACP, promises and pitfalls of advance directives, and promising approaches, including ACP interventions and research, as well as a focus on public engagement and future directions. Figures show a timeline of important advances in ACP since 1990, key features of the comprehensive ACP process, the three core aspects or pillars for implementation of ACP, stages of change for ACP behaviors, and two commercially available end-of-life games. Tables list theoretical pros and cons of advance directives, ACP resources, examples of recent research studies on ACP interventions, types and examples of ACP resources, and public engagement campaigns.   This review contains 5 highly rendered figures, 5 tables, and 100 references.

Advance care planning and people with dementia

2018 ◽  
Author(s):  
Karen Harrison Dening
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Diagnostic Process ◽  
Clear Understanding ◽  
Care Planning ◽  
Life Care ◽  
People With Dementia ◽  
Advance Care ◽  
Person With Dementia

Advance care planning (ACP) is widely recognised as a process to enable an individual’s preferences and wishes for palliative and end-of-life care to be recognized at a time when they no longer have the capacity to make such ‘real time’ and autonomous decisions. In dementia, it is essential that ACP be offered early in the diagnostic process and supported when the person still has the ability to do so. Often decisions about end-of-life care for a person with dementia are made in the later stages of the illness, at a point of transition or crisis and with the absence of a clear understanding of their wishes. Clinicians may then turn to family members in the assumption that they know what these would be, however, this is often not the case which can add undue pressure to families in distressing circumstances.

Engaging death: Narrative and constructed dialogue in Advance Care Planning discussions

2015 ◽  
Vol 11 (2) ◽  
pp. 153-165 ◽  
Author(s):  
Gabriella Modan ◽  
Seuli Bose Brill
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
Healthcare Providers ◽  
Cultural Barriers ◽  
Care Planning ◽  
Constructed Dialogue ◽  
Life Issues ◽  
Advance Care ◽  
End Of Life Issues ◽  
Death Narrative

Advance Care Planning (ACP) remains extremely low in the US, due to numerous institutional and cultural barriers and discomfort in discussing death. There is a need for guidance about how patient and healthcare providers can effectively engage in ACP discussion. Here we analyze the linguistic strategies that focus-group participants use when discussing ACP in detailed ways. Prevalent linguistic structures in effective ACP discussions were loved ones’ end-of-life narratives, hypothetical narratives, and constructed dialogue. In elucidating spontaneous, unprompted approaches to effective discussion of end-of-life issues, such research can help to dislodge communicative barriers to ACP so that more people are prepared to engage the process.

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