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.

scholarly journals Advance Care Planning and Hospice Use Among People with Dementia: A Report from the Health and Retirement Survey

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 935-935
Author(s):  
Kathryn Coccia
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
Hospice Care ◽  
Demographic Data ◽  
Tube Feeding ◽  
Care Planning ◽  
People With Dementia ◽  
Advance Care ◽  
Hospice Use ◽  
The Impact

Abstract People with Alzheimer’s disease and related dementias (ADRD) frequently receive sub-optimal end-of-life care (EOLC), often enduring invasive procedures such as tube feeding, resuscitation, and surgery within days of their death. While advance care planning (ACP) has shown effectiveness in improving EOLC for those with ADRD, there are many barriers to ACP specific to the ADRD population. Research suggests that hospice care is optimal in reducing end of life suffering for ADRD patients. This study aimed to empirically assess hospice utilization and ACP for individuals with ADRD compared to individuals without ADRD, and to assess the impact of ACP on hospice utilization for individuals with ADRD. Data came from the 2016-2018 wave of the Health and Retirement Study (HRS), a national longitudinal study collecting health and demographic data on older Americans. This analysis evaluated survey responses from 1,224 proxy respondents for individuals who died during this period. In this sample, people with ADRD were both significantly more likely to have utilized hospice care (OR=1.37) and to have written EOLC instructions in place (OR=1.19). Those with ADRD were 22% less likely to have discussed their EOLC wishes with their proxy than those without ADRD. Having a written EOLC plan in place significantly increased the odds of hospice utilization (OR=1.37) but discussion around EOLC preferences increased odds of hospice utilization at a higher rate (OR=1.59). These results support policy to advance earlier ACP conversations around EOLC preferences and the implementation of written EOLC instructions to reduce suffering for individuals with ADRD diagnoses .

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.

Discussion and documentation of future care: a before-and-after study examining the impact of an alternative approach to recording treatment decisions on advance care planning in an acute hospital

2017 ◽  
Vol 10 (2) ◽  
pp. e12-e12 ◽  
Author(s):  
Alexandra C Malyon ◽  
Julia R Forman ◽  
Jonathan P Fuld ◽  
Zoë Fritz
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
Treatment Decisions ◽  
Care Planning ◽  
New Approach ◽  
Significance Level ◽  
Oncology Ward ◽  
Future Care ◽  
Advance Care ◽  
The Impact

ObjectiveTo determine whether discussion and documentation of decisions about future care was improved following the introduction of a new approach to recording treatment decisions: the Universal Form of Treatment Options (UFTO).MethodsRetrospective review of the medical records of patients who died within 90 days of admission to oncology or respiratory medicine wards over two 3-month periods, preimplementation and postimplementation of the UFTO. A sample size of 70 per group was required to provide 80% power to observe a change from 15% to 35% in discussion or documentation of advance care planning (ACP), using a two-sided test at the 5% significance level.ResultsOn the oncology ward, introduction of the UFTO was associated with a statistically significant increase in cardiopulmonary resuscitation decisions documented for patients (pre-UFTO 52% to post-UFTO 77%, p=0.01) and an increase in discussions regarding ACP (pre-UFTO 27%, post-UFTO 49%, p=0.03). There were no demonstrable changes in practice on the respiratory ward. Only one patient came into hospital with a formal ACP document.ConclusionsDespite patients’ proximity to the end-of-life, there was limited documentation of ACP and almost no evidence of formalised ACP. The introduction of the UFTO was associated with a change in practice on the oncology ward but this was not observed for respiratory patients. A new approach to recording treatment decisions may contribute to improving discussion and documentation about future care but further work is needed to ensure that all patients’ preferences for treatment and care at the end-of-life are known.

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.

Quality Improvement Initiatives to Reduce Mortality: An Opportunity to Engage Palliative Care and Improve Advance Care Planning

2018 ◽  
Vol 36 (2) ◽  
pp. 97-104 ◽  
Author(s):  
Signe Peterson Flieger ◽  
Erica Spatz ◽  
Emily J. Cherlin ◽  
Leslie A. Curry
Keyword(s):  
Palliative Care ◽  
Quality Improvement ◽  
End Of Life ◽  
Advance Care Planning ◽  
Secondary Analysis ◽  
Care Quality ◽  
Care Planning ◽  
Goals Of Care ◽  
Patient Goals ◽  
Advance Care

Background: Despite substantial efforts to integrate palliative care and improve advance care planning, both are underutilized. Quality improvement initiatives focused on reducing mortality may offer an opportunity for facilitating engagement with palliative care and advance care planning. Objective: In the context of an initiative to reduce acute myocardial infarction (AMI) mortality, we examined challenges and opportunities for engaging palliative care and improving advance care planning. Methods: We performed a secondary analysis of qualitative data collected through the Leadership Saves Lives initiative between 2014 and 2016. Data included in-depth interviews with hospital executives, clinicians, administrators, and quality improvement staff (n = 28) from 5 hospitals participating in the Mayo Clinic Care Network. Focused analysis examined emergent themes related to end-of-life experiences, including palliative care and advance care planning. Results: Participants described challenges related to palliative care and advance care planning in the AMI context, including intervention decisions during an acute event, delivering care aligned with patient and family preferences, and the culture around palliative care and hospice. Participants proposed strategies for addressing such challenges in the context of improving AMI quality outcomes. Conclusions: Clinicians who participated in an initiative to reduce AMI mortality highlighted the challenges associated with decision-making regarding interventions, systems for documenting patient goals of care, and broader engagement with palliative care. Quality improvement initiatives focused on mortality may offer a meaningful and feasible opportunity for engaging palliative care. Primary palliative care training is needed to improve discussions about patient and family goals of care near the end of life.

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.

Impact of mindfulness training on avoidant coping and advance care planning.

2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 86-86
Author(s):  
Shelley A. Johns ◽  
Kathleen Beck-Coon ◽  
Karen Schmidt ◽  
Timothy E. Stump ◽  
Jennifer Kim Bernat ◽  
...  
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
Avoidant Coping ◽  
Present Moment ◽  
Care Planning ◽  
Cognitive Avoidance ◽  
Post Intervention ◽  
Psychiatric Disturbance ◽  
Goals Of Care ◽  
Advance Care

86 Background: Timely end-of-life (EOL) discussions and advance care planning (ACP) are crucial to quality cancer care; however, patients, family caregivers (CGs), and oncologists often avoid these tender conversations. When EOL discussions are avoided, patients are more likely to receive non-beneficial treatment near death and CGs are more likely to experience psychiatric disturbance. Mindfulness meditation facilitates emotional regulation and may enhance adaptive coping necessary for EOL discussions and ACP. Methods: Mindfully Optimizing Delivery of End-of-Life (MODEL) Care is a within-group pilot study developed to train patients with advanced-stage solid malignancies and their CGs (n=13 dyads) in present-moment awareness and non-reactive coping through a variety of mindfulness practices. Eligible patients met a threshold for avoidant coping and had not completed a Physician Orders for Scope of Treatment (POST) form documenting care preferences. Cognitive avoidance and quality of life (QoL) for patients and CGs were assessed from baseline (T1) to post-intervention (T2) and 1-month follow-up (T3) with standardized response mean (SRM) effect sizes. ACP from T1 to T3 was assessed descriptively. Results: Moderate decreases in cancer-related avoidance were found for patients (SRM=-0.47) and CGs (SRM=-0.59) T1 to T2, while T1 to T3 effects were small for patients (SRM=-0.31) and large for CGs (SRM=-1.12). At T1, no patient had completed a POST form; by T3, 50% reported completing one and 40% were preparing to do so soon. At T1, 23% of patients reported having had a ‘goals of care’ discussion with their oncologist, with 82% doing so by T3. At T1, 46% of patients reported having discussed ‘goals of care’ with their CGs, with 100% doing so by T3. Large improvements in QoL were found at both time points for patients and CGs (SRMs ranging from 0.85 to 1.21). Conclusions: Mindfulness was associated with mostly moderate reductions in avoidant coping and large improvements in QoL for patients and caregivers, with notable ACP progress for patients.

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