Effect of the STAMP (Sharing and Talking About My Preferences) Intervention on Completing Multiple Advance Care Planning Activities in Ambulatory Care

Fried, Terri R.; Paiva, Andrea L.; Redding, Colleen A.; Iannone, Lynne; OʼLeary, John R.; Zenoni, Maria; Risi, Megan M.; Mejnartowicz, Slawomir; Rossi, Joseph S.

doi:10.7326/m21-1007

Cited by 11 publications

(11 citation statements)

References 37 publications

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“…While patients and surrogates view ACP as important, 7,31,32 there are well-documented barriers to ACP completion, particularly among PLWD due to lack of knowledge about the trajectory of dementia in families and lack of confidence in starting discussions among health care providers. [33][34][35] Regardless of the mechanism, our findings suggest that ACP remains underutilized among those who may most benefit from ACP, and, as recent studies suggest, 36,37 interventions leveraging implementation science that take into account the many moving parts from patient, caregiver, provider, health system, and payer perspectives may be necessary to improve communication and ACP in real-world settings.…”

Section: Discussionmentioning

confidence: 94%

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Trends in advance care planning and end‐of‐life care among persons living with dementia requiring surrogate decision‐making

Gotanda

Walling

Reuben

et al. 2022

J American Geriatrics Society

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Background: Previous studies have demonstrated positive impacts of advance care planning (ACP) on end-of-life (EOL) care. We sought to examine trends in ACP and EOL care intensity among persons living with dementia who required surrogate decision-making in their final days of life. Methods: We analyzed the participants of the Health and Retirement Study (HRS), a nationally representative longitudinal panel study of U.S. residents, with dementia 70 years and older who required surrogate decision-making in the final days of life and died between 2000 and 2014. Based on surrogate reports after the death of a participant, our study measured the completion of three specific types of patient-engaged ACP (written EOL care instructions, assignment of a durable power of attorney for healthcare, patient engagement in EOL care discussions) and four measures of EOL care in the final days of life (death in hospital, receipt of life-prolonging treatments, limiting or withholding certain treatments, and receipt of comfort-oriented care). All analyses accounted for the complex survey design of HRS.Results: Among 870 adults (weighted N = 2,812,380) with dementia who died in 2000-2014 and required surrogate decision-making at EOL, only 34.8% of patients participated in all three aspects of ACP, and there was not a significant increase in ACP completion between 2000 and 2014. The receipt of life-prolonging treatments in the final days of life has increased over time (adjusted change per year, 1.4 percentage points [pp]; 95% CI, 0.5 to 2.2 pp; P-for-trend = 0.002), while the percentage of death in hospital, limiting or withholding certain treatments, or comfort-oriented care did not change.Conclusions: Our findings suggest that the rates of ACP completion have not increased over time despite its potential benefits and life-prolonging treatments are still common among PLWD who require surrogate decision-making, a population who might benefit greatly from early ACP.

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Section: Discussionmentioning

confidence: 94%

“…To date, interventions based on implementation science have been successful for non-dementia population. 36,37 Future research should develop and implement realworld approaches to integrating ACP early in the trajectory of illness for PLWD and study the impact of ACP on the quality of EOL care and surrogate outcomes.…”

Section: Discussionmentioning

confidence: 99%

Trends in advance care planning and end‐of‐life care among persons living with dementia requiring surrogate decision‐making

Gotanda

Walling

Reuben

et al. 2022

J American Geriatrics Society

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“…Similar to previous studies examining perspectives regarding advances care planning in general (36,37) and advance directives in particular (38), all participants lacked a clear understanding of the concepts. They tended to conflate advance directives with people's last will or testament, and those in the veteran Jewish and Arab groups even equated them with euthanasia.…”

Section: Understanding Dementia-related Advance Directivesmentioning

confidence: 94%

Exploring the Motivations for Completing Advance Care Directives: A Qualitative Study of Majority/Minority Israeli People Without Dementia

2022

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BackgroundCompleting advance directives has been declared an essential instrument for preserving and respecting the autonomy and preferences for end-of-life care of people living with dementia. However, research deciphering the reasoning behind the decision to complete or not advance directives in the case of dementia remains limited, especially among people pertaining to different majority/minority groups.ObjectivesTo explore the motivations of people without dementia in Israel to complete or not to complete advance directives and to compare these motivations among the majority veteran Jewish group, the minority Jewish Former Soviet Union immigrant group, and the minority Arab group.MethodsThis qualitative study used purposive sampling and focus groups with discussions elicited by a vignette. A total of 42 Israeli people without dementia participated in 6 focus groups: two with veteran Jews (n = 14), two with Jewish immigrants from the Former Soviet Union (n = 14), and two with Arabs (n = 14). The analysis followed recommended steps for thematic content analysis.ResultsFour overarching themes were identified: (1) the meaning of dementia-related advance directives, (2) motivations for willingness to complete advance directives, (3) motivations for not being willing to complete advance directives, and (4) ethical dilemmas. Some of the themes were common to all groups, while others were informed by the groups' unique characteristics. Participants displayed a lack of knowledge and misunderstanding about advance directives, and central concepts such as autonomy and competence. Furthermore, stigmatic images of dementia and of the person with the diagnosis were associated to participants' motivations to complete advance directives.ConclusionsThere is need to expand comparative research among culturally and socially similar and dissimilar groups within a country as well as between countries in order to better guide public health efforts to increase the rates of advance directives completion. Special attention should be paid to decreasing stigmatic beliefs and understanding unique cultural values and motivations.

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“…Also unknown is the extent to which clinician involvement will be required to facilitate patient-caregiver communication. While there are tools that patients can use outside of the clinical setting to engage in ACP, 32,33 the effects of these tools on overcoming barriers to patient-caregiver communication and providing caregivers with kinds of information outlined in Table 1 has not been directly studied.…”

Section: Key Pointsmentioning

confidence: 99%

Giving up on the objective of providing goal‐concordant care: Advance care planning for improving caregiver outcomes

Fried

2022

J American Geriatrics Society

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The merits and effectiveness of advance care planning (ACP) continue to be debated a full 30 years after the passage of the Patient Self-Determination Act. This act gave patients the right to create advance directives, with the objective of ensuring that the care they received at the end of life was consistent with their preferences and goals. ACP has definitively moved beyond the completion of advance directives to encompass the identification of a healthcare agent and the facilitation of communication among patients, surrogates, and clinicians. Nonetheless, the provision of goal-concordant care remains a primary objective for ACP. This article argues that this cannot and should not be the objective for ACP. Patients' goals change, and the provision of goal-concordant care is sometimes incompatible with other critical determinants of appropriate care. Instead, ACP should focus on the objective of improving caregiver outcomes. Surrogate decision-making by caregivers is associated with an elevated risk of post-traumatic stress disorder and other adverse outcomes, and these outcomes can be improved with ACP. ACP focused on caregivers involves helping caregivers to understand how they can help to shape the final chapter in a patient's life story, preventing caregivers from making promises they cannot keep, and preparing them to use all relevant information at the time decisions need to be made. K E Y W O R D Sadvance care planning, caregivers, surrogate decision-making A full 30 years after the passage of the Patient Self-Determination Act, which requires healthcare providers to give patients their rights to make advance directives under state law, 1 the medical community is still debating the utility of advance directives and advance care planning (ACP) more broadly. There is marked heterogeneity in the way in which ACP is defined and its processes described. 2 ACP has definitively expanded beyond the completion of advance directives, designed to allow patients to specify the care they wish or do not wish to receive, to include assignment of a healthcare agent and communication between the patient and caregiver. 3 Correspondingly. the objectives for ACP have grown more diverse. 4 Nonetheless, the provision of care consistent with patients' preferences and goals remains a core objective of ACP. 4 Systematic reviews characterize ACP in the following ways: ACP "involves important decision making about future medical needs" 5 and "is the process whereby patients, in consultation with healthcare professionals, family members, and other loved ones, make

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Effect of the STAMP (Sharing and Talking About My Preferences) Intervention on Completing Multiple Advance Care Planning Activities in Ambulatory Care

Cited by 11 publications

References 37 publications

Trends in advance care planning and end‐of‐life care among persons living with dementia requiring surrogate decision‐making

Trends in advance care planning and end‐of‐life care among persons living with dementia requiring surrogate decision‐making

Exploring the Motivations for Completing Advance Care Directives: A Qualitative Study of Majority/Minority Israeli People Without Dementia

Giving up on the objective of providing goal‐concordant care: Advance care planning for improving caregiver outcomes

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