Advance Care Planning Decision Aid Research Articles

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)

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.

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.

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.

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.

Patients With Advanced Cancer Choose Less Aggressive Medical Treatment on Vignettes After Using a Computer-Based Decision Aid.

Although patients often prefer less rather than more treatment at the end of life, in the absence of contrary instructions, the medical profession's de facto position is to treat aggressively. It is unknown whether a computer-based decision aid can affect treatment choices. Secondary analysis of a single-center, single-blind randomized controlled trial of an advance care planning (ACP) intervention among 200 patients with stage IV cancer. Participants were randomized to intervention (Making Your Wishes Known, a values-neutral, educational, computer-based decision aid) or control (standard living will + brochure). After reading a hypothetical clinical vignette, participants were asked whether they would want 11 medical/surgical treatments in that situation (dialysis, cardiopulmonary resuscitation [CPR], ventilator, feeding tube, etc). The median number of treatments wanted by participants was compared between groups, and logistic regression was used to compare between-group likelihood of not wanting each specific treatment. The median number of treatments wanted was 1 in the intervention group versus 5 in the control (P < .001). For 6 of 11 treatments, the intervention group was significantly less likely than control to want aggressive treatment. Most notably, compared to control, intervention participants were less likely to want CPR (odds ratio [OR] = 0.31), short-term mechanical ventilation (OR = 0.34), short-term dialysis (OR = 0.38), surgery (OR = 0.37), and transfusion (OR = 0.21). Individuals using an educational ACP decision aid were less likely to want aggressive medical treatment than those completing standard living wills. These findings have implications not only for how to respect patient's wishes but also potentially for reducing costs at the end of life.

Advance Care Planning Among Patients With Advanced Cancer.

Advance directives (AD) have been heralded as vehicles to promote patient autonomy and have been decried as ineffective. Efforts to improve advance care planning (ACP) and AD documents are wide ranging but have not been prospectively studied. In an institutional review board-approved, single-blind, randomized, controlled trial, we compared an interactive, educational ACP decision aid to standard ACP among patients with advanced cancer. We hypothesized that use of the decision aid would increase physician awareness of patients' health care wishes and increase physician adherence to patients' end-of-life wishes compared with standard ACP. A total of 200 patients were randomly assigned to two study arms. We analyzed data from medical records and interviews with physicians and family members for 121 patients who died by August 2016. No differences in physician awareness or adherence were found between the ACP decision aid and standard ACP groups. End-of-life treatment wishes and discussion of wishes were documented for 70% and 64% of the patients, respectively, but only 35% had an actual AD in the medical record. According to family members, end-of-life care was consistent with the patients' stated wishes 94% of the time. Similarly, according to physicians, it was consistent for 98%. However, according to AD documents, delivered care was consistent with desired care in only 65%. Considerably fewer patients than predicted died, and data from physicians were difficult to obtain. ACP type did not influence documentation of patient wishes or end-of-life care received. Future prospective studies must account for challenges in prognostication and point-of-care data collection at the end of life.

A Randomized Controlled Trial of Strategies to Improve Family Members' Preparedness for Surrogate Decision-Making.

To evaluate 2 strategies for preparing family members for surrogate decision-making. A 2 × 2 factorial, randomized controlled trial testing whether: (1) comprehensive online advance care planning (ACP) is superior to basic ACP, and (2) having patients engage in ACP together with family members is superior to ACP done by patients alone. Tertiary care centers in Hershey, Pennsylvania, and Boston, Massachusetts. Dyads of patients with advanced, severe illness (mean age 64; 46% female; 72% white) and family members who would be their surrogate decision-makers (mean age 56; 75% female; 75% white). Basic ACP: state-approved online advance directive plus brochure. Making Your Wishes Known (MYWK): Comprehensive ACP decision aid including education and values clarification. Pre-post changes in family member self-efficacy (100-point scale) and postintervention concordance between patients and family members using clinical vignettes. A total 285 dyads enrolled; 267 patients and 267 family members completed measures. Baseline self-efficacy in both MYWK and basic ACP groups was high (90.2 and 90.1, respectively), and increased postintervention to 92.1 for MYWK ( P = .13) and 93.3 for basic ACP ( P = .004), with no between-group difference. Baseline self-efficacy in alone and together groups was also high (90.2 and 90.1, respectively), and increased to 92.6 for alone ( P = .03) and 92.8 for together ( P = .03), with no between-group difference. Overall adjusted concordance was higher in MYWK compared to basic ACP (85.2% vs 79.7%; P = .032), with no between-group difference. The disconnect between confidence and performance raises questions about how to prepare family members to be surrogate decision-makers.

Nurse-Led Patient-Centered Advance Care Planning in Primary Care

Advance care planning rates remain low, indicating a need to identify an approach that promotes acceptance of, and participation in, high-quality advance care planning by clinicians, patients, and families. A pilot study was conducted to evaluate the feasibility and acceptability of a nurse-led advance care planning intervention in primary care, comparing 4 advance care planning decision aids to help patients consider options; a 4-arm, prospective, comparative design was used with scripted discussions between 4 nurses and 40 patients in a large Midwestern clinic. The study procedures were determined to be feasible and acceptable. Most invited patients agreed to participate (40 of 66, 60%); 38 of 40 completed the intervention. Overall, patients and nurses were satisfied with the intervention. Changes in scores on the engagement survey were positive, indicating improvement across all groups. According to these preliminary data, 124 patients would be required in each group for a fully powered study. In addition, 34 of 40 patients (85%) completed an advance directive; all 40 patients identified a healthcare agent. The use of nurses to facilitate advance care planning with patients may be an opportunity to improve healthcare and patient outcomes and support full-scope nursing practice in primary care settings.

High satisfaction and low decisional conflict with advance care planning among chronically ill patients with advanced chronic obstructive pulmonary disease or heart failure using an online decision aid: A pilot study.

Many patients with chronic illnesses report a desire for increased involvement in medical decision-making. This pilot study aimed to explore how patients with exacerbation-prone disease trajectories such as advanced heart failure or chronic obstructive pulmonary disease experience advance care planning using an online decision aid and to compare whether patients with different types of exacerbation-prone illnesses had varied experiences using the tool. Pre-intervention questionnaires measured advance care planning knowledge. Post-intervention questionnaires measured: (1) advance care planning knowledge; (2) satisfaction with tool; (3) decisional conflict; and (4) accuracy of the resultant advance directive. Comparisons were made between patients with heart failure and chronic obstructive pulmonary disease. Over 90% of the patients with heart failure (n = 24) or chronic obstructive pulmonary disease (n = 25) reported being "satisfied" or "highly satisfied" with the tool across all satisfaction domains; over 90% of participants rated the resultant advance directive as "very accurate." Participants reported low decisional conflict. Advance care planning knowledge scores rose by 18% (p < 0.001) post-intervention. There were no significant differences between participants with heart failure and chronic obstructive pulmonary disease. Patients with advanced heart failure and chronic obstructive pulmonary disease were highly satisfied after using an online advance care planning decision aid and had increased knowledge of advance care planning. This tool can be a useful resource for time-constrained clinicians whose patients wish to engage in advance care planning.

Promoting perioperative advance care planning: a systematic review of advance care planning decision aids.

This systematic review identifies possible decision aids that promote perioperative advance care planning (ACP) and synthesizes the available evidence regarding their use. Using PubMed, EMBASE, Cochrane, SCOPUS, Web of Science, CINAHL, PsycINFO and Sociological Abstracts, researchers identified and screened articles for eligibility. Data were abstracted and risk of bias assessed for included articles. Thirty-nine of 5327 articles satisfied the eligibility criteria. Primarily completed in outpatient ambulatory populations, studies evaluated a variety of ACP decision aids. None were evaluated in a perioperative population. Fifty unique outcomes were reported with no head-to-head comparisons conducted. Findings are likely generalizable to a perioperative population and can inform development of a perioperative ACP decision aid. Future studies should compare the effectiveness of ACP decision aids.

Creating an advance-care-planning decision aid for high-risk surgery: a qualitative study.

BackgroundHigh-risk surgery patients may lose decision-making capacity as a result of surgical complications. Advance care planning prior to surgery may be beneficial, but remains controversial and is hindered by a lack of appropriate decision aids. This study sought to examine stakeholders’ views on the appropriateness of using decision aids, in general, to support advance care planning among high-risk surgery populations and the design of such a decision aid.MethodsKey informants were recruited through purposive and snowball sampling. Semi-structured interviews were conducted by phone until data collected reached theoretical saturation. Key informants were asked to discuss their thoughts about advance care planning and interventions to support advance care planning, particularly for this population. Researchers took de-identified notes that were analyzed for emerging concordant, discordant, and recurrent themes using interpretative phenomenological analysis.ResultsKey informants described the importance of initiating advance care planning preoperatively, despite potential challenges present in surgical settings. In general, decision aids were viewed as an appropriate approach to support advance care planning for this population. A recipe emerged from the data that outlines tools, ingredients, and tips for success that are needed to design an advance care planning decision aid for high-risk surgical settings.ConclusionsStakeholders supported incorporating advance care planning in high-risk surgical settings and endorsed the appropriateness of using decision aids to do so. Findings will inform the next stages of developing the first advance care planning decision aid for high-risk surgery patients.

Spiritual Wellbeing Among Patients with Cancer Receiving Concurrent Outpatient Oncologic and Palliative Care (S757)

s, and PsycINFO, with search results compiled in a reference manager. Inclusion and exclusion criteria for the articles were developed. Articles were screened by a title-abstract primary screen, title-abstract secondary screen, and full article screen. Final articles were reviewed and relevant data and study quality metrics were abstracted into a predetermined abstraction sheet with the abstracted data collected into summary tables. Tables were examined to reveal emerging themes. A total of 4531 articles were collected in the reference manager following the database searches. Primary and secondary title/abstract screen yielded a total of 157 articles appropriate for full review. Emerging themes already reveal the utilization of over twenty different types of advance care planning aids with study populations ranging from healthy asymptomatic adults to severely ill, highly symptomatic patients and families. Conclusion. Advance care planning decision aids are being developed for, and tested in, a wide variety of patient populations. They improve patient and surrogate comfort with decision making and comprehension, though their impact on health care utilization is still unclear. Impact of Automatic Palliative Care Consultation for Hospitalized Patients with Advanced Cancer (S759) Gabrielle Rocque University of Alabama at Birmingham, Mountain Brook, AL. Toby Campbell, MD, University of Wisconsin, Madison, WI. Jens Eickhoff, PhD, University of Wisconsin, Madison, WI. Renae Quale, RN, University of Wisconsin School of Medicine and Public Health, Madison, WI. Anne Barnett, PA-C, UW Hospital Madison Wisconsin, Oregon, WI. James Cleary, MD, UW School of Medicine & Public Health, Madison, WI.

The Development and Use of Advance Care Planning Aids in Clinical Practice: A Systematic Review (S758)

s, and PsycINFO, with search results compiled in a reference manager. Inclusion and exclusion criteria for the articles were developed. Articles were screened by a title-abstract primary screen, title-abstract secondary screen, and full article screen. Final articles were reviewed and relevant data and study quality metrics were abstracted into a predetermined abstraction sheet with the abstracted data collected into summary tables. Tables were examined to reveal emerging themes. A total of 4531 articles were collected in the reference manager following the database searches. Primary and secondary title/abstract screen yielded a total of 157 articles appropriate for full review. Emerging themes already reveal the utilization of over twenty different types of advance care planning aids with study populations ranging from healthy asymptomatic adults to severely ill, highly symptomatic patients and families. Conclusion. Advance care planning decision aids are being developed for, and tested in, a wide variety of patient populations. They improve patient and surrogate comfort with decision making and comprehension, though their impact on health care utilization is still unclear. Impact of Automatic Palliative Care Consultation for Hospitalized Patients with Advanced Cancer (S759) Gabrielle Rocque University of Alabama at Birmingham, Mountain Brook, AL. Toby Campbell, MD, University of Wisconsin, Madison, WI. Jens Eickhoff, PhD, University of Wisconsin, Madison, WI. Renae Quale, RN, University of Wisconsin School of Medicine and Public Health, Madison, WI. Anne Barnett, PA-C, UW Hospital Madison Wisconsin, Oregon, WI. James Cleary, MD, UW School of Medicine & Public Health, Madison, WI.

An Environmental Scan of Advance Care Planning Decision Aids for Patients Undergoing Major Surgery: A Study Protocol

Patients who undergo major surgery are at risk for perioperative morbidity and mortality. It would be appropriate to initiate advance care planning with patients prior to surgery, but surgeons may experience difficulty initiating such conversations. Rather than focus on changing clinician behavior, advance care planning decision aids can be an innovative vehicle to motivate advance care planning among surgical patients and their families. The purpose of this paper is to describe a study protocol for conducting an environmental scan concerning advance care planning decision aids that may be relevant to patients undergoing high-risk surgery. This study will gather information from written or verbal data sources that incorporate professional and lay perspectives: a systematic review, a grey literature review, key informant interviews, and patient and family engagement. It is envisioned that this study will generate three outcomes: a synthesis of current evidence, a summary of gaps in knowledge, and a taxonomy of existing advance care planning decision aids. This environmental scan will demonstrate principles of patient-centered outcomes research, and it will exemplify a pioneering approach for reviewing complex interventions. Anticipated limitations are that information will be gathered from a small sample of patients and families, and that potentially relevant information could also be missing from the environmental scan due to the inclusion/exclusion criteria. Outcomes from the environmental scan will inform future patient-centered research to develop and evaluate a new decision aid.

Advance care planning decision aid improves clinician understanding of wishes of patients with ALS

This study examined whether a computer-based decision aid for advance care planning (ACP) could help improve communication about end-of-life treatment wishes between patients with amyotrophic lateral sclerosis (ALS) and the...

Medical students' experiences using an online decision aid to engage in advance care planning

Most physicians report that their medical training inadequately prepared them to help patients engage in advance care planning (ACP). This study examined the experience of medical students who used an...