Advance Care Planning Decisions Research Articles

PEER SUPPORT FOR CAREGIVERS OF AFRICAN AMERICANS LIVING WITH DEMENTIA: A PHASE 1 BEHAVIORAL INTERVENTION PROTOCOL

Abstract African American caregivers of older adults living with Alzheimer’s disease or a related dementia are at high risk for physical, spiritual, and psychosocial challenges. Peer mentorship, a relationship-centered person-to-person approach may reduce healthcare decision-making burden among African American caregivers through cultural tailoring by promoting oral traditions, personal contact, and storytelling. The purpose of this Stage 1 intervention study is to use a stakeholder-informed approach in further developing and pilot testing the co-created Peer Support for Caregivers of African Americans Living with Alzheimer’s Disease and Related Dementias (Pair2Care), a culturally sensitive caregiver peer support program. Pair2Care feasibility and acceptability will be evaluated in current (n=15) and trained former (n=15) African American Alzheimer’s and related dementia caregivers. Pair2Care will be deemed feasible and acceptable by evaluating eligibility criteria, recruitment and retention data, protocol adherence, satisfaction, and feedback on program appropriateness for broader dissemination. Preliminary intervention outcomes of caregiver anxiety, depression, quality-of-life, social support, self-efficacy for surrogate decision-making, and intent to use palliative care or hospice services will be assessed to evaluate intervention effectiveness. At 6 months as compared to baseline, current caregivers will report less anxiety and depression, improved quality-of-life, social support, and self-efficacy for surrogate decision-making, as well as intent to use palliative care or hospice services as part of healthcare and advance care planning decision- making. Pair2Care poses an innovative strategy with the potential to address advance care planning and healthcare decision-making, a significant health disparity problem and thereby promote health equity.

LEADing advance care conversations: concordance amongst ADRD dyads

AbstractBackgroundThe LEAD Guide (Life‐Planning in Early Alzheimer’s and Other Dementias)1 is a validated paper‐based dementia‐focused advance care planning (ACP) guide that addresses changes in cognition and goals of care along the ADRD continuum, preparing surrogate decision‐makers for loss of the care recipient’s decisional abilities. Achieving agreement on decision elements of ACP in care partner (CP)/care recipient (CR) dyads may reduce ambiguity, increase CP confidence, and assure that preferences and values are honored. Using multiple approaches, we developed a working definition of ACP concordance amongst ADRD dyads.MethodUsing the LEAD Guide as the foundation we developed the pilot LEAD Intervention, a community‐based NIH Stage‐1 behavioral intervention.2 This 9‐month study guided CP/CR dyads through a dementia‐focused ACP process that integrates a digital version of the LEAD Guide with ACP educational modules delivered through a web‐based platform. Dyads had the option of recording their care conversation. To understand the process of achieving dyadic consensus in elements of ACP, we conducted a scoping review of the literature and a qualitative analysis of recorded interviews.ResultOf 61 eligible dyads, 41 completed the LEAD intervention; 7 in‐depth recordings were obtained. Our scoping review of 6,788 manuscripts identified no operational definitions of ACP concordance, 35 that revealed essential elements of successful discussion processes and only one that characterized essential qualities of CPs. Using descriptive analysis,3 seven themes illustrating agreement on ACP issues were discerned: Respect/Regard for each other; use of Clarifying Processes; Conveying Health Care Scenarios to justify wishes; Affirmation of Understanding; Recognizing Uncertainty; Humor and Expression of Positive Emotions; and Trust. Notably, all seven dyads voiced confidence that they “finished the discussion successfully,” meaning reaching a state of concordance.ConclusionOur synthesis of the research literature and our qualitative findings suggests that a working definition of ACP decision concordance is when the caregiver understands the patient’s values that inform the preferences and choices of the patient, understands those choices and preferences and the rationale for the choices and preferences, and expresses a willingness to accomplish the patient’s wishes to the best of their ability. This definition contributes to research clarity in ACP investigations.

Patient and Clinician Perspectives on an Advance Care Planning Decision Aid for Older Patients with CKD: Decision Aid for Renal Therapy (DART)-Advance Care Planning (ACP)

Patient and Clinician Perspectives on an Advance Care Planning Decision Aid for Older Patients with CKD: Decision Aid for Renal Therapy (DART)-Advance Care Planning (ACP)

Anxiety and Depression in Metastatic Cancer: A Critical Review of Negative Impacts on Advance Care Planning and End-of-Life Decision Making With Practical Recommendations.

Providers treating adults with advanced cancer increasingly seek to engage patients and surrogates in advance care planning (ACP) and end-of-life (EOL) decision making; however, anxiety and depression may interfere with engagement. The intersection of these two key phenomena is examined among patients with metastatic cancer and their surrogates: the need to prepare for and engage in ACP and EOL decision making and the high prevalence of anxiety and depression. Using a critical review framework, we examine the specific ways that anxiety and depression are likely to affect both ACP and EOL decision making. The review indicates that depression is associated with reduced compliance with treatment recommendations, and high anxiety may result in avoidance of difficult discussions involved in ACP and EOL decision making. Depression and anxiety are associated with increased decisional regret in the context of cancer treatment decision making, as well as a preference for passive (not active) decision making in an intensive care unit setting. Anxiety about death in patients with advanced cancer is associated with lower rates of completion of an advance directive or discussion of EOL wishes with the oncologist. Patients with advanced cancer and elevated anxiety report higher discordance between wanted versus received life-sustaining treatments, less trust in their physicians, and less comprehension of the information communicated by their physicians. Anxiety and depression are commonly elevated among adults with advanced cancer and health care surrogates, and can result in less engagement and satisfaction with ACP, cancer treatment, and EOL decisions. We offer practical strategies and sample scripts for oncology care providers to use to reduce the effects of anxiety and depression in these contexts.

Changing Life Plans: When to Engage Caregivers of Older Adults With Cancer in Advance Care Planning.

Advance care planning (ACP) is a continuous process where individuals discuss and document their end-of-life preferences with trusted caregivers and health care providers. Caregivers are pivotal to include in ACP discussions because they assist loved ones to navigate serious medical illness. The purpose of this study was to examine caregivers' engagement in ACP decision making with their loved ones with cancer. A qualitative descriptive design was used, informed by Engel's biopsychosocial model, with a convenience sample of 14 caregivers in North Carolina. Virtual interviews were conducted using a semistructured interview guide. Using prevalence logic, the overarching theme of "Changing Life Plans" was explained by two subthemes, "Learning the Diagnosis" and "Keeping Them on Track." The timing and location of ACP conversations were important considerations. Over half of the participants (64%) had no knowledge or had misconceptions about ACP, and 5 had accurate knowledge. Nurses could develop partnerships with community leaders trained in palliative care principles to begin conversations early with community members. Advocacy groups might hold events, such as the Hello Game, in community settings to facilitate early ACP conversations.

Quality and Satisfaction With Advance Care Planning Conversations Among English- and Spanish-Speaking Older Adults.

Background: Little is known about the patient-reported quality of and satisfaction with advance care planning (ACP) conversations with surrogates and clinicians among English- and Spanish-speaking older adults, or the potential disparities associated with ACP communication satisfaction. Objectives: To determine patients' perceived quality of and satisfaction with ACP surrogate/clinician conversations and associated patient characteristics. Design: Cross-sectional baseline data were used from two ACP trials, 2013-2017. Outcomes included self-reported ACP conversation quality ("general" vs. "detailed") and communication satisfaction (5-point Likert scale). Associations were determined by chi-squared and t-tests. Setting/Subjects: Subjects were primary care patients ≥55 years with chronic/serious illness in the United States. Results: Of 1398 patients, mean age was 65.6 years (±7.7), 46% women, 32% Spanish speaking, 34% had limited health literacy, and 589 (42%) reported conversations with surrogates and 216 (15%) with clinicians. Of these, less than half rated the conversations as detailed high quality (clinician: 43%; surrogate: 37%). Five-point communication satisfaction scores were higher with detailed versus general conversations (e.g., surrogates: 4.4 vs. 4.1, p = 0.001; clinicians: 4.4 vs. 4.2, p = 0.18) and more often reported by men versus women [(4.4 (0.8) vs. 4.0 (1.0), p = 0.003]; those with adequate versus limited health literacy [4.4 (0.8) vs. 4.0 (0.9), p = 0.002]; and English versus Spanish speakers [4.5 (0.7) vs. 3.5 (0.9), p < 0.001]. Conclusions: Among English- and Spanish-speaking older adults, ACP conversations were infrequent and most were general in quality. Higher quality detailed conversations resulted in greater communication satisfaction. Interventions are needed to improve conversation quality, particularly for Spanish-speaking patients and those with limited health literacy. Trial Registrations: ClinicalTrials.gov identifiers: "Improving Advance Care Planning by Preparing Diverse Seniors for Decision Making (PREPARE)" NCT01990235 and "Preparing Spanish-Speaking Older Adults for Advance Care Planning and Medical Decision Making (PREPARE)" NCT02072941.

Theory of Pivoting Uncertainties: Advance Care Planning Among Individuals Living With Mechanical Circulatory Support.

Individuals living with mechanical circulatory support (MCS) devices are confronted with risks for catastrophic outcomes such as stroke and systemic infection. Considering these complexities, ongoing advance care planning (ACP) is important for shared decision making. The purpose of this study was to describe how experiences of the MCS trajectory informed decision making about ACP. All aspects of the research were guided by constructivist grounded theory. Focused conversations were conducted with a semistructured interview guide. A total of 24 community-dwelling patients living with MCS were interviewed (33% female; mean age, 60.6 years; 50% White). Participants were implanted with MCS (average duration, 29.8 months; bridge to transplant, 58%). Reflected in the narratives were tensions between initial expectations of living with the device in contrast with the realities that emerged over time. A crucial finding was that ACP decision making pivoted around the growing awareness of uncertainties in the MCS trajectory. Yet, clinicians were perceived to be silent in initiating ACP, and their reticence was understood as a sign of encouragement to hold on to hope for a heart transplant. The complex and dynamic decision-making processes around ACP were organized into the theory of pivoting uncertainties. In this sample, patients were ready to share their concerns about the uncertainties of living with MCS and waited for MCS clinicians to initiate ACP. The theory of pivoting uncertainties is useful for elucidating the ebb and flow of ACP and lending clinicians' guidance for opportunities to initiate these sensitive conversations.

Implementation of advance care planning decision aids for patients undergoing high-risk surgery: a field-testing study

BackgroundPatients undergoing high-risk surgery are at a risk of sudden deterioration of their health. This study aimed to examine the feasibility of the development of two patient decision aids (PtDAs) to assist patients undergoing high-risk surgeries in informed decision-making about their medical care in a crisis.MethodsThis field testing implemented two PtDAs that met the international criteria developed by the researchers for patients before surgery. Study participants were patients scheduled to be admitted to the intensive care unit after surgery at one acute care hospital in Japan and their families. The study used a mixed-methods approach. The primary outcome was patients’ decision satisfaction evaluated by the SURE test. Secondary outcomes were the perception of the need to discuss advance care planning (ACP) before surgery and mental health status. The families were also surveyed on their confidence in proxy decision-making (NRS: 0–10, quantitative data). In addition, interviews were conducted after discharge to assess the acceptability of PtDAs. Data were collected before (preoperative outpatients, baseline: T0) and after providing PtDAs (in the hospital: T1) and following discharge (T2, T3).ResultsNine patients were enrolled, of whom seven agreed to participate (including their families). The SURE test scores (mean ± SD) were 2.1 ± 1.2 (T0), 3.4 ± 0.8 (T2), and 3.9 ± 0.4 (T3). The need to discuss ACP before surgery was 8.7 ± 1.3 (T1) and 9.1 ± 0.9 (T2). The degree of confidence in family surrogate decision-making was 6.1 ± 2.5 (T0), 7.7 ± 1.4 (T1), and 8.1 ± 1.5 (T2). The patients reported that using PtDAs provided an opportunity to share their thoughts with their families and inspired them to start mapping their life plans. Additionally, patients wanted to share and discuss their decision-making process with medical professionals after the surgery.ConclusionsPtDAs supporting ACP in patients undergoing high-risk surgery were developed, evaluated, and accepted. However, they did not involve any discussion of patients’ ACP treatment wishes with their families. Medical providers should be coached to provide adequate support to patients. In the future, larger studies evaluating the effectiveness of PtDAs are necessary.

Knowledge, attitudes, and behavioral intentions of elderly individuals regarding advance care planning: Questionnaire development and testing.

BackgroundStudies have indicated that the advance care planning knowledge and attitudes of elderly individuals strongly affect their implementation of advance care planning. A measurement with a theoretical base for evaluating elderly individuals’ knowledge, attitudes, and behavioral intentions regarding advance care planning is lacking.ObjectivesTo develop a questionnaire and understand elderly individuals’ knowledge, attitudes, and behavioral intentions regarding implementing advance care planning.MethodsA cross-sectional questionnaire survey was conducted. The content validity index, and statistical methods, including discrimination, factor, and reliability analysis, were adopted for psychometric testing. Descriptive statistics mainly presented data analysis.Results401 elderly individuals were recruited from a medical center and one senior activity center. The content validity index was approximately 0.71–0.92 for the developed questionnaires, the Kuder–Richardson formula 20 was 0.84 for advance care planning knowledge, and the Cronbach’s alpha was 0.86, 0.94, 0.76, and 0.92 for attitudes, behavioral intentions, influencing factors, and subjective norms, respectively. The average score for advance care planning knowledge for elderly individuals was 4.42, with a correct answer rate of 49.1%. They lacked knowledge of advance care planning-related legislation. The mean score for attitudes and behavioral intentions was 14.32 and 3.48, respectively. Elderly individuals agreed that advance care planning has benefits but were worried about the emotional distress caused by advance care planning discussions. Elderly individuals with positive behavioral intentions tend to implement advance care planning. Spouses, children, doctors, and nurses are significant reference people for elderly individuals.ConclusionsThe developed questionnaire exhibits good validity and reliability for understanding elderly individuals’ knowledge, attitudes, and behavioral intentions concerning advance care planning. Advance care planning materials or decision aids suitable for elderly individuals must be developed to increase their understanding of advance care planning. Additionally, the role of nurses is indispensable in promoting advance care planning among elderly individuals.

Advance care planning and the parental geographical background in pediatric palliative home care: a retrospective chart review

The relevance to acknowledge the parental migration history in pediatric palliative care is widely recognized. However, its influence on integral parts of advance care planning (ACP) is unknown. In this non-interventional cohort study, we aimed at identifying systematic differences between pediatric palliative patients with varying parental countries of origin regarding medical orders for life-sustaining treatment and the location of patients’ death. Two hundred eighty-eight pediatric cases in an ambulant pediatric palliative care setting in Germany were retrospectively analyzed using multinomial logistic regression models. Agreements on medical orders for life-sustaining treatment (MOLST) differed significantly between patients with varying parental countries of origin. Full code orders for life-sustaining treatment were made more often in Turkish families than in German families. There were no significant associations between the patients’ location of death and the parental countries of origin. However, confounder-analysis revealed a strong association between the patients’ underlying disease and the orders for life-sustaining treatment as well as the location of death.Conclusions: Even this study indicates that the parental geographical background as an important sociocultural aspect might have an impact on ACP decisions for children and adolescents with life-limiting conditions, other factors as the patients’ underlying disease can be more crucial for decision making in pediatric palliative care. The reason for the differences found might lay in cultural preferences or barriers to appropriate care. The inclusion of sociocultural aspects in decision-making is crucial to guarantee culture-sensitive, patient-centered pediatric palliative care.What is Known:• Decision making processes in pediatric palliative care are influenced by various cultural and religious norms.• So far, there is little knowledge about tangible differences with regard to end-of-life care decisions according to the geographical background of parents.What is New:• End-of-life care decisions varied significantly with the parental country of origin.• Other factors as the underlying disease may be more crucial for decision making in pediatric palliative care.

Advance care planning: End-of-life hopes and fears among community dwelling adults.

End-of-life (EOL) medical care in the United States often does not align with patients' goals and preferences. This study explored EOL hopes and fears among 86 community-dwelling adults and examined medical and psychological predictors of death anxiety. Common EOL hopes included absence of suffering, closure, and personal fulfillment. Common EOL fears included suffering, lack of competence, and specific types of death. Fear of the dying process was greater than fear of death itself. Health predicted death anxiety; age alone, did not. Advance care planning and clinical decision making should include these psychological insights and explicitly address EOL hopes and fears.

Discussion of advance care planning on end-of-life decisions with lung cancer patients in Wuhan, China: attitude, timing and future directions.

BackgroundProgress in advance care planning (ACP) in China has been hindered for decades compared with other countries.AimsTo describe knowledge of ACP, end‐of‐life (EOL) care preferences and the predictors of patients' preference for ACP, as well as who should mention ACP among Chinese lung cancer patients.MethodsQuestionnaire‐based interviews were carried out. Two hundred and fifty‐eight lung cancer patients were recruited when first admitted to Tongji Hospital from October 2017 to November 2018. Social‐demographic factors, which might influence patients' preference on ACP decisions and who should mention ACP, were evaluated using multivariate logistic regression analysis.ResultsA total of 91.1% (n = 235) of patients favoured ACP on EOL issues. One hundred and sixty (60%) patients wanted to make EOL decisions on their own. Only 10% of patients were familiar with advance directions. Eighty‐two (31.8%) patients were familiar with do not resuscitate/do not intubate (DNR/DNI) directions. ACP was not mentioned in 92.2% of patients. Gender (male, OR = 4.87 (2.16–5.83)), tumour stage (Stage III, OR = 0.108 (0.06–0.51); Stage IV, OR = 1.780 (1.02–2.11)) and number of children (every increase in the number of children, OR = 0.267 (0.09–0.93)) were the significant predictors of preference for autonomous ACP. Female patients and patients currently receiving treatment are 2.743 and 1.8 times, respectively, more willing to need ACP initiated by doctors.ConclusionsChinese patients showed preferences towards ACP, but with inadequate knowledge. More assistance is needed with ACP for those patients, especially for females, patients with one child and those with early stage lung cancer. For female patients and patients receiving treatment, doctors may initiate ACP dialogue first.

What Surrogates Understand (and Don't Understand) About Patients' Wishes After Engaging Advance Care Planning: A Qualitative Analysis.

The goal of advance care planning (ACP) is to improve end-of-life decision-making for patients and their spokespersons, but multiple studies have failed to show substantial or consistent benefit from ACP. Understanding how and why ACP under-performs in the setting of complex medical decision-making is key to optimizing current, or designing new, ACP interventions. To explore how ACP did or did not contribute to a spokespersons' understanding of patient wishes after engaging in ACP. Thematic analysis of 200 purposively sampled interviews from a randomized control trial of an ACP decision aid. 200 dyads consisting of patients 18 years or older with advanced serious illness and their spokesperson at 2 tertiary care centers in Hershey, PA and Boston, MA. Participants were interviewed 1 month after completing ACP. ACP helped participants: 1) express clear end-of-life wishes, 2) clarify values, and 3) recognize challenges associated with applying those wishes in complex situations. Shortcomings of ACP included 1) unknown prognostic information or quality-of-life outcomes to inform decision-making, 2) skepticism about patients' wishes, and 3) complicated emotions impacting end-of-life discussions. Helping patients and their spokespersons better anticipate decision-making in the face of prognostic and informational uncertainty as well as the emotional complexities of making medical decisions may improve the efficacy of ACP interventions.

117 Hospital @Home and the Amber Care Bundle: Introducing the Concept of Uncertainty of Survival to Improve Advance Care Planning

Abstract Introduction GSTT@home is a hospital@home providing multi-disciplinary acute care in peoples’ homes throughout Lambeth and Southwark. AMBER is an internationally recognised care bundle to improve care for hospital inpatients where survival is uncertain. The bundle prompts recognition of survival uncertainty, communication and advance care planning (ACP)- principles relevant to many hospital@home patients. This quality improvement project aimed to embed these principles into GSTT@home by adapting AMBER to this community setting. Methods Cycle 1 Plan- Determine whether @home patients might benefit from principles of AMBER. Do and Study- Audit patients &amp;gt;80 years that died within a 3-month period after @home admission (January–June 2018); one in 10 patients died (10.9%), median age 82 and median CFS 8. Act- Inpatient AMBER bundle adapted for @home setting to systemically identify and prompt ACP. Cycle 2 Plan and Do- AMBER@Home bundle formally introduced and piloted with @home, education using posters and lanyard cards. Study Audit use of AMBER@Home for patients &amp;gt;80 years who died within three months of discharge from @home (August–October 2019). Act- AMBER@Home incorporated into daily handover document. Cycle 3 Plan and Do- Further education embedded AMBER@Home, increased consultant and GP support. Study- Use of AMBER@Home re-audited as above for November 2019–January 2020. Conclusions Using AMBER@Home appears to have changed practice without the AMBER bundle being formally used. Throughout 3 audit cycles there was a steady increase in ACP. Future planned interventions include appointing a frailty nurse to @home team to further embed AMBER@Home, distributing lanyard cards more often and using “Coordinate My Care” to improve accessibility to ACP decisions including PEACE.

Effect of Advance Care Planning on Surrogate Decision Makers' Preparedness for Decision Making: Results of a Mixed-Methods Randomized Controlled Trial.

Background: Advance care planning (ACP) is intended to help patients and their spokespersons prepare for end-of-life decision making, yet little is known about what factors influence the extent to which spokespersons feel prepared for that role. Objective: To examine spokespersons' perceived preparedness for surrogate decision making after engaging in ACP. Design: Mixed methods experimental design with qualitative thematic analysis and data transformation (creating categorical data from rich qualitative data) of interviews collected during a randomized controlled trial (2012-2017). Setting/Participants: Two tertiary care medical centers (Hershey, PA and Boston, MA). Of 285 dyads (patients with advanced illness and their spokespersons) enrolled in the trial, 200 spokesperson interviews were purposively sampled and 198 included in the analyses. Main Outcomes and Measures: Interviews with spokespersons (four weeks post-intervention) explored spokespersons' perceived preparedness for surrogate decision making, occurrence of ACP conversations, and spokespersons' intentions regarding future surrogate decisions. Data transformation was used to categorize participants' responses into three categories: Very Prepared, Very Unprepared, or In Between Prepared and Unprepared. Themes and categories were compared across arms. Results: About 72.72% of spokespersons (144/198) reported being Very Prepared and 27.28% (54/198) reported being Very Unprepared or In Between with no differences in preparedness across study arms. Occurrence of post-intervention ACP conversations did not influence perceived preparedness; however, spokespersons who used an ACP decision aid reported more conversations. Four themes emerged to explain spokespersons' perceived preparedness: (1) perceptions about ACP; (2) level of comfort with uncertainty; (3) relational issues; and (4) personal characteristics. Regarding future intentions, it emerged that spokespersons believed their knowledge of patient wishes, as well as other personal, relational, situational, and emotional factors would influence their surrogate decisions. Conclusions: Factors extrinsic to specific ACP interventions influence how prepared spokespersons feel to act as spokespersons. Understanding these factors is important for understanding how to improve concordance between patients' stated end-of-life wishes and surrogate decisions. Trial Registration: NCT02429479.

Perspectives of Persons With Dementia, Family, and Healthcare Providers on an Advance Care Planning Decision Aid

Few evidence-based interventions to engage persons living with dementia in advance care planning (ACP) exist. We developed and explored the acceptability and appropriateness of an ACP decision aid for PLWD/family caregiver dyads living in the U.S. We conducted a mixed-methods study with 10 persons with dementia-caregiver dyads, and 4 healthcare providers. Content analysis and descriptive analysis were conducted. Major and subthemes included: (1) the role of caregivers during ACP discussion: clarifier, guide, and proxy; (2) decisional needs of persons with dementia for ACP: lack of knowledge and decisional conflict; and (3) perceptions of the decision aid: lack of clarity between advance directive types, a need to remove any questions that may be conceptually different, but appear similar to users, and need to include summary of decision-support needs. Findings provide implications for how healthcare providers can use a decision aid to facilitate ACP conversations with persons with dementia and caregivers.

Enhancing Shared Decision Making in a Chronic Population. Use of an Advance Directive Decision Aid for Patients with Heart Failure and Their Caregivers

BackgroundHeart failure (HF) is a costly, progressive, symptomatic, and deadly condition affecting more than 6 million people in the United States. Despite evidence that advance care planning (ACP), including completion of an advance directive (AD), enhances decision-making quality and patient experience, completion rates remain low. ACP decision aids have been shown to improve the quality of decisions in other chronic illnesses, yet few have been tested in the HF population.PurposeThis pilot study was designed to test the feasibility and acceptability of an Advance Directive Decision Aid (ADDA) in hospitalized patients with HF and their designated caregivers. The secondary aim was to describe the levels of decisional conflict (DC) and decisional regret (DR) associated with participating in ACP discussions and consideration of completing an AD.MethodsConvenience sampling was used to recruit 30 dyads (patients with HF and their designated caregivers) from an academic medical center. Feasibility was assessed by tracking the enrolled, ineligible, and refusal rates, in addition to the time to deliver the intervention. Acceptability was assessed via completion of a follow-up survey and participation in an exit interview. The dyads were evaluated for DC and DR following delivery of the ADDA.ResultsFor enrolled patients, mean age was 56.5 years (SD = 12.17), 73% were Caucasian, most were male (66.6%), 54% were diagnosed with HF <1 year, and 70% were NYHA IV. Patients that were ineligible or refused participation were similar in sociodemographic data to the enrolled sample, though the refusal sample was significantly younger (56.5 years vs 49.47 years; p = 0.011). The ADDA took 2-5 minutes to complete. 80% of dyads found the ADDA to be acceptable and would recommend the ADDA to others. Dyads also reported that the ADDA assisted decision making to complete an AD. Dyads expressed similar amounts of DC; however, caregivers were found to have significantly more DR compared to patients (p = 0.008). In qualitative analysis, both patients and caregivers reported decreased anxiety and gratitude about ACP discussions. Enrolled patients expressed a sense of relief in participating in ACP discussions, though continued to endorse a sense of “impending death” if they completed an AD. Only 8 of 30 patients completed an AD at the conclusion of the study.ConclusionsThis pilot study revealed that the ADDA was feasible in clinical practice and acceptable to patients and caregivers. Younger patients were more likely to refuse the ADDA and caregiver regret was higher among caregivers than patients after viewing the ADDA. Patients remain fearful that completing an AD means death is imminent. Future research needs to be directed at breaking down the barrier to completing an AD and increasing completion rates, engaging the younger aged HF population, and understanding and decreasing caregiver regret.

Communication of advance care planning decisions: a retrospective cohort study of documents in general practice

BackgroundDoctors, particularly general practitioners, play a significant role in assisting patients to create advance care plans. When medically indicated, these documents are important tools to promote congruence between end-of-life care and patient’s personal preferences. Despite this, little is known regarding the availability of these documents in hospitals. The aim of this study was to identify the proportion of people who died in hospital without an advance care plan and how many of these had advance care planning (ACP) documents in their general practice records.MethodsA retrospective cohort study was conducted of patient hospital records with manual linkage to general practice records. The large regional hospital in Victoria, Australia has a catchment population in excess of 300,000 people. The study sample was patients aged 75 years and over who died in the hospital between 1 January 2016 and 31 December 2017. The hospital records of these patients were examined to identify those which did not have a system alert for ACP documents on the file. Alerted ACP documents were limited to those legislated in the state of Victoria: advance care plan, Enduring Power of Attorney (Medical Treatment) or Enduring Power of Guardianship. Where no ACP document system alert was found in the hospital record, the patient’s nominated general practice was consented to participate and the corresponding general practice record was examined. Data were analysed using descriptive statistics.ResultsOf the 406 patients who died in hospital, 76.1% (309) did not have a system alert for any ACP document. Of the 309 hospital records without a system alert, 144 (46.7%) corresponding general practice records were examined. Of these, 14.6% included at least one ACP document, including four advance care plans, that were not available in hospital.ConclusionsUnless ACP documents are consistently communicated from general practice, patient’s preferences may be unknown during end-of-life care. It is important that both doctors and patients are supported to use connected electronic health records to ensure that documents are readily available to healthcare staff when they are required.

Surrogate Decision Maker Stress in Advance Care Planning Conversations: A Mixed-Methods Analysis From a Randomized Controlled Trial

ContextSpokespersons serving as surrogate decision makers for their loved ones report high levels of stress. Despite known benefits, advance care planning (ACP) conversations often do not occur. More information is needed to understand spokesperson stress during ACP. ObjectivesTo explore if and how spokespersons perceive stress related to ACP conversations; compare factors related to stress; and assess whether ACP intervention impacted stress. MethodsSecondary and mixed-methods analysis with data transformation of semistructured interviews occurring during a 2 × 2 factorial (four armed) randomized controlled trial that compared standard online ACP to a comprehensive online ACP decision aid. Tools were completed by patients with advanced illness (n = 285) alone or with their spokesperson (n = 285). About 200 spokesperson interviews were purposively sampled from each of the four arms (50 per arm). ResultsACP conversations were reported as stressful by 54.41% (74 of 136) and nonstressful by 45.59% (62 of 136). Five themes impacting spokesperson stress were the nature of the relationship with their loved one; self-described personality and belief systems; knowledge and experience with illness and ACP conversations; attitude toward ACP conversations; and social support in caregiving and decision making. No significant differences in stress were associated with arm assignment. ConclusionIdentifying what factors impact spokesperson stress in ACP conversations can be used to help design ACP interventions to more appropriately address the needs and concerns of spokespersons.

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