Preparing Spanish-speaking Older Adults for Advance Care Planning and Medical Decision-Making—The PREPARE Trial

Author(s):  
Rebecca Sudore ◽  
Dean Schillinger ◽  
Aiesha Volow ◽  
Ying Shi ◽  
John Boscardin ◽  
...  
2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 903-903
Author(s):  
Yifan Lou ◽  
Jinyu Liu ◽  
Bei Wu

Abstract Objective: Primary family caregiver (CG), other family members (FM), and medical professionals (MP) play important roles in medical decision-making for older adults with dementia, who often have lost the capacity to make decisions on their own. Power dynamics within the CG-FM-MP triad relationship determine the process and outcome of the decision-making. Guided by Rahl’s relational power model, this study is among the first to understand the experiences of advance care planning among Chinese. Method: This study includes a total of 25 primary CGs or FMs and 5 MPs from 3 neurology departments. Hybrid grounded theory method was used to analyze the preliminary data we had so far. Based on the dimensions of power, we analyzed the power base, means, and scope of each agent in each interview to determine the power comparability. Results: Three types of triadic power relations were categorized: 1) shared-power with shared-decision, in which three agents shared the power of decision-making and CG as the lawful decision-maker makes the final decisions; 2) balanced-power with reversed-patriarchal decisions, in which FM’s power is over both CG and MP and become the actual decision-maker; and 3) unbalanced power with conflicting decisions, in which neither CG and FM has absolute power over each other and MP becomes the actual decision-maker implicitly. Conclusion: The study provides a framework for researchers and practitioners to understand the ACP process for Chinese older adults, which helps develop intervention strategies to improve surrogates’ ACP knowledge and reduce potential conflicts during the stressful process for the population.


2017 ◽  
Vol 35 (8_suppl) ◽  
pp. 101-101
Author(s):  
Robert Michael Daly ◽  
Andrew Hantel ◽  
Blase N. Polite

101 Background: ICU admissions in the last 30 days of life is a quality measure endorsed by the National Quality Forum. Our prior research has demonstrated that nearly half of terminal oncology ICU hospitalizations are potentially avoidable. Methods: This was a retrospective care series of patients cared for in an academic medical center’s ambulatory oncology practice who died in an ICU during July 1, 2012 to June 30, 2013. Using a standardized assessment tool, an oncologist, intensivist, and hospitalist reviewed each patient’s electronic health record from 3 months prior to hospitalization until death and made a clinical determination of avoidability. Two investigators, blinded to the specialty of the reviewer, used a grounded theory approach to extract clinical themes associated with avoidability from the reviewers’ assessments. Results: The primary themes for avoidability identified and percent by specialty were as follows: failure to initiate appropriate advance care planning in the outpatient setting (68% oncologists, 55% intensivists, 65% hospitalists), failure to integrate understanding of limited prognosis from underlying cancer within the context of acute hospitalization (23% oncologists, 24% intensivists, 26% hospitalists), failure of clinical management (6% oncologists, 21% intensivists, 6% hospitalists), failure to recognize futility of outside hospital transfer (3% oncologists, 0% intensivists, 0% hospitalists), and failure of care coordination (0% oncologists, 0% intensivists, 3% hospitalists). A failure to educate and integrate surrogates into timely medical decision making was a prominent secondary theme for oncologists (22%), intensivists (18%), and hospitalists (29%). Conclusions: The themes identified suggest potential interventions to prevent avoidable terminal oncology ICU hospitalizations, including improved advance care planning in the outpatient setting, inpatient multidisciplinary communication to gain a better understanding of the patient’s underlying malignancy within the context of the acute hospitalization and prevent failures in clinical management, and better education and integration of surrogates in medical decision making.


2021 ◽  
Vol 50 (Supplement_1) ◽  
pp. i12-i42
Author(s):  
R Harwood ◽  
H Enguell ◽  
K Sakuda ◽  
E Lunt ◽  
A Ali

Abstract Introduction Departmental discharge data (January 2017–January 2018) suggested a high number of “Day 1 Deaths” i.e. an individual who was readmitted 24 hours after discharge, and subsequently died during their readmission. We wondered if this was due to a lack of Advance Care Planning (ACP). Methods We undertook a retrospective case note audit of 50 cases from the “readmissions who died” (total 176/7421) subgroup, to understand whether or not they were predictably within the last days, weeks or months of life and whether there was ACP in place. We reviewed all Day 1 Deaths (16/50), and a random selection of cases across the Day 2–30 (34/50) data set. We used the Gold Standards Framework (GSF) as a prognostic tool, by use of the intuitive “surprise question” (“would you be surprised if this person died within the next days, weeks, months?”) and the disease-specific Prognostic Indictors (PI). Results Using the GSF we (retrospectively) predicted death in 94% of the Day 1 deaths and 63% of the Day 2–30 deaths. There was evidence of ACP in 32/50 patients (64%), predominantly in the form of a DNAR CPR (61%). There was very little evidence of other forms of ACP. Readmissions were justified on the basis of a medical condition in 100% of cases; this was infective in 60% (30/50). There were few interactions with secondary care in the 12 months prior to death (mode was 2 admissions in the month prior to death, 4 in the 12 months prior to death). Conclusions We must consider our discharge processes and medical decision making at the front door. A Prognostic indicator Tool would be useful to focus medical decision making. We must recognise infections as end stage disease in advanced ill health, including advanced frailty. We need to consider how we facilitate meaningful involvement of older people in their medical care towards the end of life.


Author(s):  
Linda H. Phung ◽  
Deborah E. Barnes ◽  
Aiesha M. Volow ◽  
Brookelle H. Li ◽  
Nikita R. Shirsat ◽  
...  

2018 ◽  
Vol 178 (12) ◽  
pp. 1616 ◽  
Author(s):  
Rebecca L. Sudore ◽  
Dean Schillinger ◽  
Mary T. Katen ◽  
Ying Shi ◽  
W. John Boscardin ◽  
...  

Author(s):  
Cheng-Pei Lin ◽  
Jen-Kuei Peng ◽  
Ping-Jen Chen ◽  
Hsien-Liang Huang ◽  
Su-Hsuan Hsu ◽  
...  

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.


2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 404-404
Author(s):  
Shirin Vellani ◽  
Martine Puts ◽  
Katherine McGilton ◽  
Andrea Iaboni

Abstract Older adults diagnosed with mild dementia can identify their wishes, values and goals of care with a high degree of accuracy and reliability. However, there is a paucity of research to guide best practices on how to incorporate Advance Care Planning (ACP) in the care of older adults living with mild dementia. Thus, only a minority of them participate in any ACP discussions. We developed an intervention called Voice Your Values (VYV) that healthcare professionals can implement to identify and document values of older adults. This single group pretest and posttest design aimed to determine the feasibility, acceptability and preliminary efficacy of the intervention. A convenience sample of 20 dyads of older adults and their trusted individuals were recruited from 4 geriatric clinics. Tailored VYV intervention was delivered to dyads on a one-on-one basis over two sessions using videoconferencing. Feasibility was determined through recruitment and retention rates, and intervention fidelity. Acceptability was assessed using modified Treatment Evaluation Inventory. Primary outcome was the Surrogate Decision-Making Confidence Scale. Secondary outcomes included an ACP engagement survey to assess older adults’ engagement in ACP; Dementia Knowledge Assessment Tool for trusted individuals; and the Kessler Psychological Distress Scale for all participants. The recruitment rate was 45%, retention rate was 100% and 92% participants rated VYV as highly acceptable. Trusted individuals showed statistically significant improvement in decision-making confidence (p=.02) and psychological distress (p=.02); but no improvement in dementia knowledge (p=.47). Older adults demonstrated statistically significant improvement in ACP engagement (p=<.01). Initial feasibility of VYV was demonstrated.


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