15 The Experiences of Bereaved Family Caregivers with Advance Care Planning for Children with Medical Complexity

Cancer patients and their family caregivers experience various losses when patients become terminally ill, yet little is known about the grief experienced by patients and caregivers and factors that influence grief as patients approach death. Additionally, few, if any, studies have explored associations between advance care planning (ACP) and grief resolution among cancer patients and caregivers. To fill this knowledge gap, the current study examined changes in grief over time in patients and their family caregivers and whether changes in patient grief are associated with changes in caregiver grief. We also sought to determine how grief changed following the completion of advance directives. The sample included advanced cancer patients and caregivers (n = 98 dyads) from Coping with Cancer III, a federally funded, multi-site prospective longitudinal study of end-stage cancer care. Participants were interviewed at baseline and at follow-up roughly 2 months later. Results suggest synchrony, whereby changes in patient grief were associated with changes in caregiver grief. We also found that patients who completed a living will (LW) experienced increases in grief, while caregivers of patients who completed a do-not-resuscitate (DNR) order experienced reductions in grief, suggesting that ACP may prompt “grief work” in patients while promoting grief resolution in caregivers.

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Limited engagement in, yet clear preferences for advance care planning in young-onset dementia: An exploratory interview-study with family caregivers

Palliative Medicine ◽

10.1177/0269216319864777 ◽

2019 ◽

Vol 33 (9) ◽

pp. 1166-1175 ◽

Cited By ~ 2

Author(s):

Romy Van Rickstal ◽

Aline De Vleminck ◽

Melissa D Aldridge ◽

Sean R Morrison ◽

Raymond T Koopmans ◽

...

Keyword(s):

Family Caregivers ◽

Advance Care Planning ◽

Quality Care ◽

Third Party ◽

Care Planning ◽

Structured Interviews ◽

Young Onset ◽

People With Dementia ◽

Advance Care ◽

Young Onset Dementia

Background: The significance of advance care planning in dementia is widely acknowledged. Despite the suggestion that younger people with dementia and their family might have distinct needs and preferences in this area, studies on advance care planning in young-onset dementia are absent. Aim: We aim to explore (1) whether family caregivers had already engaged in advance care planning with patients and/ or professionals and the accompanying reasons and (2) family caregivers’ preferences for how to ideally engage in the process with patients, family and professionals. Design: A qualitative study was conducted: we analysed semi-structured interviews ( n = 15) through the method of constant comparative analysis. Setting/participants: We included Flemish family caregivers of persons with young-onset dementia. Results: Plans for the future typically concerned non-medical affairs. Participants’ limited engagement in advance care planning was clarified through several reasons: not considering it useful, hindering patient behaviour, adopting a day-to-day attitude, caregivers emotionally protecting themselves and uncertainty about patients’ cognitive competence. However, endorsement for advance care planning showed from respondents’ preferences that it should be initiated timely, by a third party, and emphasize patients’ remaining capacities. Finally, the need for information and high-quality care emerged. Conclusion: A gap of knowledge, of information and in care intertwiningly hinder advance care planning. In young-onset dementia, engaging in advance care planning is not an option equally accessible as not doing so. Policy makers, institutions and professionals could reflect on their responsibility in providing these patients and caregivers an actual choice to engage in advance care planning or not.

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Willingness of family caregivers of people with dementia to undertake Advance Care Planning: Examining an extended model of the Theory of Planned Behavior

Dementia ◽

10.1177/1471301220922761 ◽

2020 ◽

pp. 147130122092276

Author(s):

Ile Kermel Schiffman ◽

Perla Werner

Keyword(s):

Theory Of Planned Behavior ◽

Family Caregivers ◽

Planned Behavior ◽

Advance Care Planning ◽

Subjective Norms ◽

Hierarchical Regression ◽

Care Planning ◽

Medical Decisions ◽

People With Dementia ◽

Advance Care

Background and objectives Family caregivers of people with dementia experience high burden making medical decisions for their loved ones. Undertaking Advance Care Planning (ACP) can help reduce burden and stress. Having experiences making medical decisions for someone else may influence the way people make decisions for themselves. Therefore the aim of this study was to assess the willingness of family caregivers of people with dementia to undertake ACP for themselves, using the Theory of Planned Behavior. Research design and methods Face-to-face interviews were conducted with 195 family caregivers of people with dementia. A structured questionnaire was used to assessed participants’ attitudes, subjective norms, perceived control, anticipated regret, the wish to prolong life and caregiver burden. Hierarchical regression analysis was performed to test the contribution of the variables to the willingness to undertake ACP. Results Overall, participants expressed moderate willingness to undertake ACP. Among the various options for undertaking ACP, the highest willingness expressed was to appoint a durable power of attorney and the lowest willingness was to have informal conversations with their doctor. The hierarchical regression revealed that attitudes, subjective norms and anticipated regrets were main determinants of the willingness to undertake ACP. Discussion and implications Interventions should be developed to encourage family members to undertake ACP for themselves, which emphasize the advantages of the process and involve significant others in the formal and informal aspects of ACP.

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Engaging persons with dementia in advance care planning: Challenges and opportunities

Dementia ◽

10.1177/1471301220973059 ◽

2020 ◽

pp. 147130122097305

Author(s):

Tamara Sussman ◽

Rebecca Pimienta ◽

April Hayward

Keyword(s):

Focus Groups ◽

Family Caregivers ◽

Advance Care Planning ◽

Service Providers ◽

Care Planning ◽

Reflective Process ◽

Challenges And Opportunities ◽

Future Care ◽

Advance Care ◽

Positive Engagement

This study reports findings from a series of focus groups with persons with dementia and family caregivers intended to explore: (1) perceptions of and experiences with advance care planning (ACP); (2) concerns related to future care including, but not limited to, end-of-life care; and (3) practices that may support positive engagement with ACP. A total of 18 participants including 10 persons with dementia and eight family caregivers participated in five focus groups held in two urban cities in Canada. All focus group deliberations were audio recorded, transcribed verbatim, and analyzed in five stages using a semantic thematic approach. All participants expressed some form of engagement in ACP, but understandings were limited and divergence was expressed regarding the timing of more expansive conversations about future care. Although some persons with dementia were ready to engage in future care discussions, most preferred focusing on the present and suggested their families did not require direction. This placed families in the complex dilemma of protecting their loved ones while compromising their own needs for dialogue. Although individually focused models of ACP engagement hold promise for those persons with dementia ready to engage in future planning, our findings suggest that early engagement of families in the reflective process may go a long way in supporting ACP activation. Our findings further suggest that persons with dementia who do not have close family/friends may require extensive ACP encouragement and support from service providers.

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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 ◽

10.1136/bmjopen-2020-038528 ◽

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.

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Preferences on the Timing of Initiating Advance Care Planning and Withdrawing Life-Sustaining Treatment between Terminally-Ill Cancer Patients and Their Main Family Caregivers: A Prospective Study

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph17217954 ◽

2020 ◽

Vol 17 (21) ◽

pp. 7954

Author(s):

Cheng-Pei Lin ◽

Jen-Kuei Peng ◽

Ping-Jen Chen ◽

Hsien-Liang Huang ◽

Su-Hsuan Hsu ◽

...

Keyword(s):

Family Caregivers ◽

Advance Care Planning ◽

Medical Decision Making ◽

Terminally Ill ◽

Medical Decision ◽

Care Planning ◽

Terminally Ill Cancer Patients ◽

Life Sustaining Treatment ◽

Advance Care ◽

A Prospective Study

Background: The Western individualistic understanding of autonomy for advance care planning is considered not to reflect the Asian family-centered approach in medical decision-making. The study aim is to compare preferences on timing for advance care planning initiatives and life-sustaining treatment withdrawal between terminally-ill cancer patients and their family caregivers in Taiwan. Methods: A prospective study using questionnaire survey was conducted with both terminally-ill cancer patient and their family caregiver dyads independently in inpatient and outpatient palliative care settings in a tertiary hospital in Northern Taiwan. Self-reported questionnaire using clinical scenario of incurable lung cancer was employed. Descriptive analysis was used for data analysis. Results: Fifty-four patients and family dyads were recruited from 1 August 2019 to 15 January 2020. Nearly 80% of patients and caregivers agreed that advance care planning should be conducted when the patient was at a non-frail stage of disease. Patients’ frail stage of disease was considered the indicator for life-sustaining treatments withdrawal except for nutrition and fluid supplements, antibiotics or blood transfusions. Patient dyads considered that advance care planning discussions were meaningful without arousing emotional distress. Conclusion: Patient dyads’ preferences on the timing of initiating advance care planning and life-sustaining treatments withdrawal were found to be consistent. Taiwanese people’s medical decision-making is heavily influenced by cultural characteristics including relational autonomy and filial piety. The findings could inform the clinical practice and policy in the wider Asia–Pacific region.

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