scholarly journals Relinquishing or taking control? Community perspectives on barriers and opportunities in advance care planning

2015 ◽  
Vol 39 (5) ◽  
pp. 528 ◽  
Author(s):  
Vanette E. J. McLennan ◽  
Jennifer H. M. Boddy ◽  
Michelle G. Daly ◽  
Lesley M. Chenoweth
Keyword(s):  
Advance Care Planning ◽  
Qualitative Methodology ◽  
Death And Dying ◽  
Care Planning ◽  
Power Of Attorney ◽  
Community Members ◽  
Testamentary Capacity ◽  
Advance Care ◽  
Barriers And Opportunities ◽  
Enduring Power

Objective This paper reports on the experiences and perspectives of community members in relation to advance healthcare directives and enduring power of attorney, including the factors that encourage or discourage engagement in advance care planning (ACP). Methods A qualitative methodology was used involving 26 in-depth telephone interviews with community members (mean age 66 years). The aims of the interview question were to gain an understanding of: (1) motivations for engaging in ACP; (2) barriers that prevent people from engaging in ACP; and (3) suggestions for promoting ACP. Results The findings suggest that: (1) community members lack knowledge about ACP; (2) forms appear inaccessible and complex; (3) community members avoid ACP due to fear, mistrust and concerns over control; and (4) there are misperceptions regarding the relevance of ACP based on age and health. Conclusions There is unnecessary fear, avoidance and mistrust around ACP activities, largely resulting from misinformation. There is an undoubted need for greater education and support to be offered to individuals and their families regarding ACP, its benefits and its limitations. What is known about the topic? There is a lack of awareness about ACP in Australia, which is compounded by issues in the accessibility of ACP information, forms and support in completing the often complex documentation. Further, studies have indicated health practitioners tend to avoid assisting patients with ACP decision making and formalisation of their wishes for health care should they lose testamentary capacity. What does this paper add? This paper contributes further understanding of the experiences and perceptions of people, particularly older Australians, in relation to ACP, including the motivating and discouraging factors for people in the uptake of advance healthcare directives and enduring power of attorney. People felt discomfort and mistrust about ACP, and lacked understanding of its relevance regardless of age or health status. Those who had engaged in ACP, prompted by family members or experiences in, or witnessing, ill health, felt a sense of security in having formalised their wishes. What are the implications for practitioners? It is now clear that people require improved provision of information and support around ACP-related activities. This support may best be offered by practitioners such as nurses and social workers who are knowledgeable regarding ACP and skilled in counselling. Without discussion of death and dying, and the role of ACP, people will continue to feel a mistrust and avoidance towards formalising their healthcare wishes in advance.

Advance care planning among older LGBT Canadians: Heteronormative influences

Sexualities ◽  
2020 ◽  
pp. 136346071989696
Author(s):  
Brian de Vries ◽  
Gloria Gutman ◽  
Shimae Soheilipour ◽  
Jacqueline Gahagan ◽  
Áine Humble ◽  
...  
Keyword(s):  
Older Adults ◽  
End Of Life ◽  
Advance Care Planning ◽  
Cultural Context ◽  
Death And Dying ◽  
Living Will ◽  
Community Dwelling ◽  
Care Planning ◽  
Power Of Attorney ◽  
Advance Care

Advance care planning (ACP) in North America often takes place in a cultural context of great ambivalence about death and dying, challenging efforts to discuss end-of-life care desires and preparations for death. Such challenges are amplified for sexual and gender minority older adults who often lack connections to traditional heteronormative systems of support. The extent of ACP preparation (completed documents, discussions) and their predictors was examined among a national sample of 91 community-dwelling Canadian LGBT older adults (mean age 68). The sample was disproportionately single and lived alone; more trans participants had children and about half of all participants reported a chosen family. About two-thirds of participants had a will, while less than half had a living will and power of attorney for health care, and a quarter had made informal caregiving arrangements. Just over one-third of respondents reported having discussions about future care and end-of-life plans. The only significant predictors of both ACP documents completed and ACP discussions undertaken were relationship status (those in a relationship were more likely to have engaged in both) and number of children (those with children were less likely to have completed documents). Given that most LGBT older adults are single, efforts must be expanded to reach and engage these individuals in preparing for end of life.

scholarly journals Racial Differences in the Impact of Subjective Life Expectancy on Advance Care Planning

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 903-903
Author(s):  
Yifan Lou ◽  
Deborah Carr
Keyword(s):  
Life Expectancy ◽  
Racial Differences ◽  
Advance Care Planning ◽  
Living Will ◽  
Care Planning ◽  
Power Of Attorney ◽  
Risk Of Death ◽  
Advance Care ◽  
Survival Expectations ◽  
The Impact

Abstract The need for advance care planning (ACP) is heightened during the COVID-19 pandemic, especially for older Blacks and Latinx persons who are at a disproportionate risk of death from both infectious and chronic disease. A potentially important yet underexplored explanation for well-documented racial disparities in ACP is subjective life expectancy (SLE), which may impel or impede ACP. Using Health and Retirement Study data (n=7484), we examined the extent to which perceived chances of living another 10 years (100, 51-99, 50, 1-49, or 0 percent) predict three aspects of ACP (living will (LW), durable power of attorney for health care designations (DPAHC), and discussions). We use logistic regression models to predict the odds of each ACP behavior, adjusted for sociodemographic, health, and depressive symptoms. We found modest evidence that SLE predicts ACP behaviors. Persons who are 100% certain they will be alive in ten years are less likely (OR = .68 and .71, respectively) whereas those with pessimistic survival prospects are more likely (OR = 1.23 and 1.15, respectively) to have a LW and a DPAHC, relative to those with modest perceived survival. However, upon closer inspection, these patterns hold only for those whose LW specify aggressive measures versus no LW. We found no race differences for formal aspects of planning (LW, DPAHC) although we did detect differences for informal discussions. Blacks with pessimistic survival expectations are more likely to have discussions, whereas Latinos are less likely relative to whites. We discuss implications for policies and practices to increase ACP rates.

The Impact of Personal and Professional Loss on Advance Care Planning and Effective Care Delivery for Healthcare Social Workers

2018 ◽  
Vol 99 (4) ◽  
pp. 358-368
Author(s):  
Cara L. Wallace ◽  
Yit Mui Khoo ◽  
Leslie Hinyard ◽  
Jennifer E. Ohs ◽  
Dulce M. Cruz-Oliver
Keyword(s):  
Social Workers ◽  
Advance Care Planning ◽  
Care Delivery ◽  
Death And Dying ◽  
Care Planning ◽  
Professional Experiences ◽  
Effective Care ◽  
Advance Care ◽  
Past Experiences ◽  
The Impact

Personal experiences can influence the practice of social work. However, the connection between past experiences with death and social workers’ practice has been underexplored. As such, this study surveyed social workers ( N = 74) about their personal and professional experiences of loss, personal advance care planning, and professional practices. Results demonstrated that social workers that experienced prior loss were more likely to complete an advance directive and communicate their end-of-life wishes. Additionally, those who had experienced personal and professional loss showed greater effectiveness on measures of patient- and family-centered communication and care delivery. Findings suggest positive outcomes for encouraging social workers to connect their personal and professional experiences surrounding death and dying to effectively serve in their professional capacity.

Health-Care Provider Personal Religious Preferences and Their Perspectives on Advance Care Planning With Patients

2018 ◽  
Vol 35 (12) ◽  
pp. 1565-1571
Author(s):  
Marjorie Bowman ◽  
Sarah St. Cyr ◽  
Adrienne Stolf i
Keyword(s):  
Health Care ◽  
Health Care Providers ◽  
Advance Care Planning ◽  
Religious Affiliation ◽  
Living Will ◽  
Care Planning ◽  
Care Providers ◽  
Power Of Attorney ◽  
Religious Preference ◽  
Advance Care

Objective: To understand how health-care providers’ (HCPs) religious preferences influence their willingness to undertake advance care planning (ACP) with patients and their acceptance of other HCP’s involvement. Methods: Online anonymous survey distributed to HCPs in hospital, ambulatory offices, and hospice settings in Dayton, Ohio. We evaluated the associations of HCP religion with their personal ACP, willingness to facilitate ACP, and acceptance of other HCPs’ ACP participation. Results: 704 respondents: nurses (66.2%), physicians (18.8%), other HCPs (15.0%), white (88.9%), and primarily Catholic (23.3%) or Protestant (32.0%). “No religion” was marked by 13.9%. Respondents were favorable to ACP with patients. Religious respondents were more likely to have a living will ( P = .035) and health-care power of attorney ( P = .007) and more accepting of clergy as ACP decision coaches ( P = .030). HCP’s religion was not associated with willingness to facilitate ACP discussions. There were minor differences between Catholics and Protestants. Conclusions: Personal religious preference is associated with HCP’s own ACP but had little relationship with their willingness to facilitate ACP conversations with patients or acceptance of other professional types of HCPs involvement in ACP conversations. Regardless of religious affiliation, HCPs have interest in undertaking ACP and endorse other HCPs ACP involvement. As results of this study suggest that personal religious affiliation is not a barrier for HCPs engaging in ACP with patients, attempts to overcome barriers to increasing ACP should be directed to other factors.

Intrapersonal Factors Impact Advance Care Planning Among Cancer Patients

2020 ◽  
pp. 104990912096245
Author(s):  
Elizabeth Palmer Kelly ◽  
Brent Henderson ◽  
Madison Hyer ◽  
Timothy M. Pawlik
Keyword(s):  
Medical Treatment ◽  
Cancer Patients ◽  
Advance Care Planning ◽  
Advance Directive ◽  
Comprehensive Cancer Center ◽  
Cancer Center ◽  
Care Planning ◽  
Power Of Attorney ◽  
Intrapersonal Factors ◽  
Advance Care

Background: Cancer patients infrequently engage in advance care planning processes. Establishing preferences for future medical treatment without advance care planning may not be patient-centered, as it fails to consider important factors that influence these important decisions. Objective: The purpose of this study was to assess the influence of patient intrapersonal factors including race, religion, level of depression, and cancer stage on overall preferences for future medical treatment, including the presence of a (DNR), power of attorney, and advance directive. Design: A retrospective chart review design was used. Patients were included who were diagnosed with cancer at The Ohio State University James Comprehensive Cancer Center from 01/2015 to 08/2019. Results: A total of 3,463 patients were included. Median age was 59 years (IQR: 49, 67) and the majority of the patients was female (88.7%). Compared with no religious preference, patients who identified as religious had 61% higher odds (95%CI: 1.08-2.40) of having a DNR and approximately 30% higher odds of having a power of attorney (95%CI: 1.08-1.62) or advance directive (95%CI: 1.02-1.64). Patients with clinically relevant depression had more than twice the odds of having a DNR versus patients with no/lower levels of clinical depression (OR: 2.08; 95%CI: 1.40-3.10). White patients had higher odds of having a power of attorney (OR: 1.57; 95%CI: 1.16-2.13) and an advance directive (OR: 3.10; 95% CI: 1.95-4.93) than African-American/Black patients. Conclusions: Understanding the factors that affect preferences for future medical treatment is necessary for medical professionals to provide proper care and support to patients diagnosed with cancer and their families.

scholarly journals Patient Perspectives on Advance Care Planning via a Patient Portal

2019 ◽  
Vol 36 (8) ◽  
pp. 682-687 ◽  
Author(s):  
Sarah R. Jordan ◽  
Adreanne Brungardt ◽  
Phoutdavone Phimphasone-Brady ◽  
Hillary D. Lum
Keyword(s):  
Health Care ◽  
Advance Care Planning ◽  
Clinical Care ◽  
Patient Perspectives ◽  
Medical Decision ◽  
Patient Portal ◽  
Care Planning ◽  
Power Of Attorney ◽  
Regional Health Care ◽  
Advance Care

Background:Patient portals can offer patients an opportunity to engage in the advance care planning (ACP) process outside of clinical visits.Objective:To describe patient perspectives on use of patient portal-based ACP tools.Design:Interviews with patients who used portal-based ACP tools. The tools included an electronic Medical Durable Power of Attorney (MDPOA) form to designate a medical decision maker, a patient-centered educational web page, online messaging, and patient access to completed advance directives stored in the electronic health record (EHR).Setting:Regional health-care system with a common EHR.Measurements:Semistructured interviews with purposefully sampled patients who used the ACP tools. Questions explored motivations for using the tools and perceptions about how the tools fit into ACP. Analysis followed a grounded hermeneutic editing approach.Results:From 46 patients (mean age: 49, 63% female), 4 key themes emerged: (1) individualized explorations of the ACP tools, (2) personal initiation and engagement with ACP tools through the portal, (3) value of connecting ACP portal tools to clinical care, and (4) practicality of the ACP tools. Patients described benefits of communicating with health-care team members who referred them to online ACP tools, as well as having the electronic MDPOA form connected to clinical care.Conclusions:Patients considered the portal-based ACP tools to be practical and feasible to use within the scope of their own ACP experiences. Further study is needed to understand whether portal-based ACP tools increase the quality and quantity of ACP conversations and documentation that is available to inform medical decision-making.

Early integrated palliative approach for idiopathic pulmonary fibrosis: A narrative study of bereaved caregivers’ experiences

2018 ◽  
Vol 32 (9) ◽  
pp. 1455-1464 ◽  
Author(s):  
Charlotte Pooler ◽  
Janice Richman-Eisenstat ◽  
Meena Kalluri
Keyword(s):  
Idiopathic Pulmonary Fibrosis ◽  
Pulmonary Fibrosis ◽  
Advance Care Planning ◽  
Life Experience ◽  
Death And Dying ◽  
Symptom Burden ◽  
Care Planning ◽  
Palliative Approach ◽  
Narrative Study ◽  
Advance Care

Background: Idiopathic pulmonary fibrosis has an uncertain and rapid trajectory after diagnosis. Palliative care is rarely utilized, although both patients and caregivers experience a distressingly high symptom burden. Most patients die in hospital. Aim: The purpose of this study was to explore bereaved caregivers’ experiences and perceptions of an early integrated palliative approach implemented at a Multidisciplinary Interstitial Lung Disease Clinic. Design: A narrative approach was used, with thematic and content analysis of open-ended interviews. Setting/participants: The clinic is located in a large western Canadian city. Caregivers of deceased patients were recruited through purposive sampling. The eight participants were either spouses or adult children. Results: Five major themes were identified: Having a Terminal Disease; Planning Goals and Wishes for Care; Living Life and Creating Memories; Feeling Strain and Responsibility; and Nearing the End. Caregivers had little understanding of prognosis prior to advance care planning conversations at the clinic. Advance care planning conversations enabled caregivers to know and support patients’ goals and wishes. Caregivers described feeling informed, prepared, and supported when death was near. They expressed neither distress nor anxiety related to patients’ symptoms or strain of relationships. Conclusion: Collaboration and close communication among caregivers, respirologists, and home care enabled effective symptom management and out of hospital deaths. Patients and caregivers had opportunities to enjoy events, create memories, determine preferences, and make plans. Further research on an early integrated palliative approach in Idiopathic Pulmonary Fibrosis is warranted related to quality of life, experience with death and dying, and caregiver bereavement.

Engaging the cancer care team in advance care planning.

2015 ◽  
Vol 33 (29_suppl) ◽  
pp. 14-14
Author(s):  
Tallat Mahmood ◽  
Jane Alcyne Severson ◽  
Laura Thompson
Keyword(s):  
Advance Directives ◽  
Advance Care Planning ◽  
Metastatic Cancer ◽  
Care Team ◽  
Care Planning ◽  
Power Of Attorney ◽  
Post Intervention ◽  
Improvement Program ◽  
Advanced Directives ◽  
Advance Care

14 Background: Engagement of oncologists and their care team is essential to ensure advance care planning (ACP) occurs for cancer patients. However, numerous barriers to ACP exists, including the availability of trained staff with competence and confidence to have discussions with patients as well as resources to ensure ACP is effectively and efficiently integrated into the oncology practice. Methods: A baseline audit to determine the presence of documented ACP discussions for patients with metastatic cancer was conducted, followed by a quality improvement program with subsequent reassessment. The baseline audit identified only 20% (10/50) compliance with documentation of such discussions. Subsequently, we joined the Michigan Oncology Quality Consortium’s (MOQC) ACP Collaborative where the care team (MA, RN, PA, MD) were taught how to request and complete a durable power of attorney, conduct ACP conversations, and document pertinent information in a standard EHR location. Results: A one-year post-intervention audit found that 80% (40/50) of patients with metastatic cancer had an ACP documented in their record - a four fold improvement. A post-implementation staff survey noted that the team improved their understanding of both the legal issues and importance of asking about advance directives as well as using the designated chart location to document. 100% of staff agreed or strongly agreed with the statement “I understand the importance of asking patients about advanced directives”. Staff gained confidence in how to talk to patients about advance directives again with 100% of staff agreeing or strongly agreeing with the statement,” I feel more confident now in how to talk to a patient about advanced directives”. Conclusions: It is critical that all members of the oncology care team understand the importance of ACP and that staff feel confident in how to have discussions with patients. While physician/patient discussion is both necessary and expected, patients often discuss their wishes and fears with others in the practice. It is critical that all members of the team understand the importance of and opportunities where they can both support patients’ wishes and direct patients to their oncologist if necessary for further discussion.

scholarly journals The Prevalence and Types of Advance Care Planning Use in Patients with Advanced Cancer: A Retrospective Single-Centre Perspective, Australia

2021 ◽  
Author(s):  
Arron S. Veltre ◽  
Andrew Broadbent ◽  
Jasotha Sanmugarajah ◽  
Amy Marshall ◽  
Mohammad Hamiduzzaman
Keyword(s):  
Advanced Cancer ◽  
Advance Care Planning ◽  
Participation Rate ◽  
University Hospital ◽  
Fisher Exact Test ◽  
Care Planning ◽  
Power Of Attorney ◽  
Retrospective Audit ◽  
Significant Difference ◽  
Advance Care

Abstract Background: Advance Care Planning (ACP) has been reported to be of value in maintaining patients’ autonomy and dignity; reducing patient and family anxiety; improving end-of-life care and reducing futile interventions. But in Australia participation rate in advance care directives is 14%, and research is limited on ACP invitations and uptake among the patients with advanced cancer (PwAC). This study identifies the prevalence and types of documented ACP discussions in PwAC who died within two or four weeks of receiving chemotherapy. Methods: A retrospective audit was conducted in Gold Coast University Hospital, Australia, and the records of 339 patients were examined and 320 patients were found eligible. Descriptive statistics were calculated in SPSS. The difference in ACP invitation and utilisation between three groups [control, <2-weeks, and –4 weeks] was measured by the Kruskal-Wallis test and Chi-square (or Fisher-Exact) test. Post-hoc follow-up pair-wise comparisons were performed. Adjusted prevalence ratios were estimated using two logistic regression models, and the significance of the coefficients was assessed using Wald test. Results: Of the 320 PwAC [male: 55%; median age: 65 years], 227 (71%) received ACP invitation, and among the invited patients, 89% used Acute Resuscitation Plan; 54% used Enduring Power-of-Attorney; and 20% completed Advance Health Directive. From 7.5% [n=24] of the patients who received chemotherapy in their last 2-weeks of life, 42% had not received an ACP invitation, 29% didn’t have Acute Resuscitation Plan and only 4% completed Advance Health Directive. There were significant differences among the Control, <2-weeks, and 2–4 weeks groups in completing Acute Resuscitation Plan (p=0.003) and Advance Health Directives (p=0.045). A significant difference was also observed between control and <2-weeks groups in number of days since Acute Resuscitation Plan used. Completing an Acute Resuscitation Plan was associated with a lower risk of dying within two-weeks of chemotherapy (OR=0.246; p=0.008). Conclusions: The low rates of ACP invitation and use in PwAC, especially who received chemotherapy in 2-weeks of dying confirm a need of embedding and regular revisiting the ACP framework in cancer care and educating staff, patients, and their family caregivers to increase the uptake.

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