Patient-centered Advance Care Planning Research Articles

Is This ACP? A Focus Group Study of Patient Experiences of Advance Care Planning.

To date, most research on patients' experiences with advance care planning (ACP) focuses on motivations to engage in discussions and how patients prepare. Gaps remain in understanding how non-critically ill Medicare patients perceive ACP encounters, including how they characterize positive and negative experiences with ACP. Understanding these patients' perceptions is imperative as Medicare has sought to incentivize provision of ACP services via two billing codes in 2016. Qualitative focus group study. Thematic analysis was performed to assess participants ACP experience. Medicare beneficiaries who had engaged in or were billed for ACP. Seven focus groups were conducted with 34 Medicare beneficiaries who had engaged in ACP across 5 US health systems. Participants described a spectrum of perceptions regarding ACP, and a range of delivery approaches, including group ACP, discussions with specialists during serious illness, and ACP in primary care settings during wellness visits. Despite being billed for ACP or having ACP services noted in their medical record, many did not recognize that they had engaged in ACP, expressed lack of clarity over the term "ACP," and were unaware of the Medicare billing codes. Among participants who described quality patient-centered ACP experiences, three additional themes were identified: trusted and established patient/clinician relationships, transparent communication and documentation, and an understanding that ACP is revisable. Participants offered recommendations for clinicians and health systems to improve the patient ACP experience. Findings include actionable steps to promote patient-centered ACP experiences, including clinician training to support improved communication and facilitating shared decision-making, allocating sufficient clinical time for discussions, and ensuring that documentation of preferences is clear and accessible. Other approaches such as group ACP and ACP navigators may help to support patient interests within clinical constraints and need to be further explored.

Capturing what matters: A retrospective observational study of advance care planning documentation at an academic medical center during the COVID-19 pandemic

Background: Advance care planning allows patients to share their preferences for medical care with the aim of ensuring goal-concordant care in times of serious illness. The morbidity and mortality of the COVID-19 pandemic has increased the importance and public visibility of advance care planning. However, little is known about the frequency and quality of advance care planning documentation during the pandemic. Aim: This study examined the frequency, quality, and predictors of advance care planning documentation among hospitalized medical patients with and without COVID-19. Design: This retrospective cohort analysis used multivariate logistic regression to identify factors associated with advance care planning documentation. Setting/participants: This study included all adult patients tested for COVID-19 and admitted to a tertiary medical center in San Francisco, CA during March 2020. Results: Among 262 patients, 31 (11.8%) tested positive and 231 (88.2%) tested negative for SARS-CoV-2. The rate of advance care planning documentation was 38.7% in patients with COVID-19 and 46.8% in patients without COVID-19 (p = 0.45). Documentation consistently addressed code status (100% and 94.4% for COVID-positive and COVID-negative, respectively), but less often named a surrogate decision maker, discussed prognosis, or elaborated on other wishes for care. Palliative care consultation was associated with increased advance care planning documentation (OR: 6.93, p = 0.004). Conclusion: This study found low rates of advance care planning documentation for patients both with and without COVID-19 during an evolving global pandemic. Advance care planning documentation was associated with palliative care consultation, highlighting the importance of such consultation to ensure timely, patient-centered advance care planning.

The Acceptability and Effect of a Communication-Based Advance Care Planning Program for Older Adults.

This study was a preliminary study that assessed the acceptability of a communication-based advance care planning (ACP) intervention for older adults to improve decision making for treatment at the end of life. Twenty dyads were recruited, including patients who were older than 65 years and registered in a home health care center of a teaching hospital in South Korea and their surrogates. The intervention is a patient-centered ACP program with surrogates and a structured and guided discussion by home health care nurses as the trained interventionists. The acceptability of the intervention was assessed by a mixed method including a survey and a structured interview with participants. Findings in this study indicate that recruiting older adults with chronic diseases and their surrogates in a home health care center and conducting the intervention by home health care nurses is feasible. In addition, the outcomes of this study suggest that the intervention may have a potential impact on end-of-life care decision making for older adults in South Korea. A larger-scale trial is required to determine the effects of the ACP program when implemented with various groups. This study suggests that older adults need an ACP program as part of routine care.

Designing a Mission statement Mobile app for palliative care: an innovation project utilizing design-thinking methodology

BackgroundEliciting individual values and preferences of patients is essential to delivering high quality palliative care and ensuring patient-centered advance care planning. Despite advance care planning conserving healthcare costs by up to 36%, reducing psychological distress of patients and caregivers, and ensuring palliative care delivery in line with patient wishes, less than 33% of adults engage in it. We aimed to develop a mobile application intervention to address the challenges related to advance care planning and improve the delivery of palliative care.MethodsDesign-thinking methodology was used to develop a mobile application, in response to issues prominently identified in current palliative care literature.ResultsIssues surrounding communication of patient values from both the patient and provider side is identified as a main issue in palliative care. We designed a mobile application intervention prototype to address this.ConclusionsOur “Mission Statement” mobile application will allow patients to create a mission statement identifying what they want their care team to know about them, as well as space to identify important values and preferences. Patients will be able to evolve their mission statement and values and preferences over the course of their palliative care journey through the application. Design-thinking methodology is an effective tool to drive healthcare innovation and bridge the gap between research findings and implementation.

PREDICTIONS OF RISK TOLERANCE ACROSS DISEASE SCENARIOS AMONG OLDER ADULTS

Advance care planning requires older adults to contemplate what kind of medical care they would prefer if faced with serious illness. Those decisions involve weighing risks of medical treatments with quality of life. The purpose of this project was to explore older adults’ tolerance for risk in medical treatment scenarios. Thirty-three adults over age 60 (mean age = 74.9, SD = 8.9) were presented with four medical scenarios reflecting increasingly severe diseases (urinary incontinence, kidney failure, dysphagia, Alzheimer disease). For each, they were asked whether they would accept a treatment with increasing risk of death (5%, 50%, 95%). Participants also recorded demographic characteristics and completed a physical and mental health measure. Older adults were more willing to accept hypothetical treatments with lower risk of death (Cochran’s Q = 27.8 - 39.0, p’s < .001), and they were more willing to accept treatments when faced with more severe diseases (Cochran’s Q = 8.7 - 29.8, p’s < .05). There were no significant associations between risk tolerance and demographic and health characteristics. These results suggest that older adults are diverse in their willingness to accept medical treatments risks, at least when presented with hypothetical medical scenarios. Medical professionals and family members who collaborate with older adults should be aware of this diversity of preferences and check assumptions based in demographic and health characteristics. Given these nuances, interventions to promote communication about medical preferences are essential to patient-centered advance care planning and medical decision making.

Effectiveness of an advance care planning patient navigator on advance directive completion by electronic versus staff-based referrals at a major cancer hospital.

20 Background: Advance Care Planning (ACP) is a central component of patient-centered care, helping ensure patient values and preferences guide clinical decisions. Patient navigators have been utilized effectively in healthcare for numerous roles, and more recently for ACP. At City of Hope National Medical Center (COH), an ACP-focused navigator was hired to support patients, families, and staff with Advance Directive (AD) notarization and primary ACP conversations. Methods: The Department of Supportive Care Medicine at COH with significant institutional collaboration and administrative support created a patient-centered ACP program and marketing campaign, called “Plan Today for Tomorrow.” In 2016, an ACP navigator joined the team to facilitate AD completion. Referral to the ACP navigator occurred either through staff endorsement and/or the institution’s technological screening platform deployed in a majority of COH outpatient clinics. Staff referrals came from physicians, clinical social workers, nurses, or from the Sheri &amp; Les Biller Patient and Family Resource Center. Prior to the ACP navigator, all referrals were addressed by Clinical Social Workers (CSWs). Results: In a review of 14 months of data, the ACP navigator followed up on 1,125 referrals, 574 were from staff, while 551 were from the institutional tablet-based screening platform. Follow-up on staff referrals resulted in an 86% AD completion rate. Follow-up on tablet-based screening resulted in a 23% AD completion rate. Conclusions: The presence of an available onsite ACP-focused navigator was more effective in facilitating AD completion of staff generated AD referrals as compared to AD completion of tablet-based patient screening AD referrals. The presence of the ACP navigator to facilitate AD completion decreased workload for CSWs, creating increased opportunity for CSWs to work at the top of their professional license. Further work is needed to increase the effectiveness of AD completion from tablet-based screening referrals.

The advance directive completion rates in the hematopoietic stem cell transplant population in a major transplant cancer center.

16 Background: Advance Care Planning (ACP) is central to patient-centered care and helps assure treatment aligns with a patient’s goals, values, and priorities. ACP is often poorly incorporated into the hematopoietic stem cell transplantation (HSCT) population, with reported advance directive (AD) rates of 23-50%. At City of Hope National Medical Center (COH), concerted efforts to improve the overall number of ADs in HSCT was undertaken and evaluated. Methods: The Department of Supportive Care Medicine at COH, in collaboration with medical faculty and administrative support, created a patient-centered ACP program. The first two years (2013/2014) broadly focused on all new COH patients. The last two years (2015/2016) included a specific focus on patients undergoing HSCT. The primary goal was a completed AD in the electronic medical record before day 0 of transplant. In addition to provider and transplant team engagement, major time points for supportive care integration to facilitate AD completion were identified including: 1) registration, 2) new patient orientation, 3) the clinical visit when transplant was decided, 4) pre-transplant education class, 5) clinical social work psychosocial assessment visit, and 6) the pre-transplant hospital days. AD completion rates were calculated with Odds Ratio and Mantel-Haenszel Chi-Square using Epi Info StatCalc. Results: Between 2012 and 2016 at COH, 1784 transplants were performed. For HSCT patients in 2012, baseline AD capture rate before day 0 of transplant was 28.6%. With the institutional AD program, the AD capture rate before day 0 of transplant was 31.6% for 2014, compared with 2012 [odds ratio, 1.17(95% CI, 0.85-1.60); p = .33]. With both institutional and hematology specific programs, AD capture rate before day 0 was 69.5% for 2016, compared to 2014[odds ratio, 4.30 (95% CI, 3.14-5.91); p &lt; .001]. Conclusions: Compared to 2012, the institutional AD program in 2014 insignificantly impacted HSCT AD completion rates. Improving the rate of AD completion from 28.6% to 69.5% in HSCT patients required both institutional AD efforts and a targeted program. Nevertheless, more work is needed to improve AD completion rates before transplant to 100%.

Effect of the PREPARE Website vs an Easy-to-Read Advance Directive on Advance Care Planning Documentation and Engagement Among Veterans

Documentation rates of patients' medical wishes are often low. It is unknown whether easy-to-use, patient-facing advance care planning (ACP) interventions can overcome barriers to planning in busy primary care settings. To compare the efficacy of an interactive, patient-centered ACP website (PREPARE) with an easy-to-read advance directive (AD) to increase planning documentation. This was a comparative effectiveness randomized clinical trial from April 2013 to July 2016 conducted at multiple primary care clinics at the San Francisco VA Medical Center. Inclusion criteria were age of a least 60 years; at least 2 chronic and/or serious conditions; and 2 or more primary care visits; and 2 or more additional clinic, hospital, or emergency room visits in the last year. Participants were randomized to review PREPARE plus an easy-to-read AD or the AD alone. There were no clinician and/or system-level interventions or education. Research staff were blinded for all follow-up measurements. The primary outcome was new ACP documentation (ie, legal forms and/or discussions) at 9 months. Secondary outcomes included patient-reported ACP engagement at 1 week, 3 months, and 6 months using validated surveys of behavior change process measures (ie, 5-point knowledge, self-efficacy, readiness scales) and action measures (eg, surrogate designation, using a 0-25 scale). We used intention-to-treat, mixed-effects logistic and linear regression, controlling for time, health literacy, race/ethnicity, baseline ACP, and clustering by physician. The mean (SD) age of 414 participants was 71 (8) years, 38 (9%) were women, 83 (20%) had limited literacy, and 179 (43%) were nonwhite. No participant characteristic differed significantly among study arms at baseline. Retention at 6 months was 90%. Advance care planning documentation 6 months after enrollment was higher in the PREPARE arm vs the AD-alone arm (adjusted 35% vs 25%; odds ratio, 1.61 [95% CI, 1.03-2.51]; P = .04). PREPARE also resulted in higher self-reported ACP engagement at each follow-up, including higher process and action scores; P <.001 at each follow-up). Easy-to-use, patient-facing ACP tools, without clinician- and/or system-level interventions, can increase planning documentation 25% to 35%. Combining the PREPARE website with an easy-to-read AD resulted in higher planning documentation than the AD alone, suggesting that PREPARE may increase planning documentation with minimal health care system resources. clinicaltrials.gov Identifier: NCT01550731.

A Novel Website to Prepare Diverse Older Adults for Decision Making and Advance Care Planning: A Pilot Study

ContextWe have reconceptualized advance care planning (ACP) as a multistep process focused on preparing patients with skills needed for communication and in-the-moment decision making. ObjectivesTo operationalize this paradigm, we created an easy-to-use ACP website (prepareforyourcare.org) based on a theoretical framework of behavior change and pilot-tested its efficacy to engage older adults in ACP. MethodsAt baseline and 1 week after viewing the PREPARE website, we assessed behavior change in ACP by using a validated survey that includes Process Measures (knowledge, contemplation, self-efficacy, and readiness, 5-point Likert scales) and Action Measures (yes/no whether an ACP behavior was completed). We also assigned participants into behavior change stages (i.e., precontemplation, contemplation, preparation, action, maintenance) and determined the percentage of participants who moved from precontemplation at baseline to higher stages at 1 week. We also assessed PREPARE ease-of-use (10-point scale, 10 being the easiest). Changes were assessed with Wilcoxon signed rank sum tests and McNemar’s tests. ResultsMean age of the participants was 68.4 years (SD 6.6), and 65% were nonwhite. Behavior Change Process Measures average Likert scores increased from 3.1 (0.9) to 3.7 (0.7), P < 0.001. Action Measures did not change significantly. However, precontemplation significantly decreased for most actions (e.g., talking to doctor about desired medical care, 61% to 35%, P < 0.003), with a mean decrease of 21% (range, 16%-33%). PREPARE was rated a nine of ten (±1.9) for ease-of-use. ConclusionA new, patient-centered ACP website that focuses on preparing patients for communication and decision making significantly improves engagement in the process of ACP and behavior change. A clinical trial of PREPARE is currently underway.

Advance Care Planning Intervention

Kirchoff and colleagues1 understate the value and important implications of their exceptional study. It is one of only two randomized controlled studies now available on the effect of a model advance care planning intervention for ambulatory individuals at high risk of facing end-of-life decisions. It demonstrates excellent design, the feasibility of such a study, and the use of a patient-centered advance care planning module. Following patients over 3 years, the authors show that approximately one-third of high-risk patients die and that one-quarter of these become decisionally incapacitated at the time of death. Thus, advance care planning has the potential to influence the care of approximately one-twelfth of high-risk individuals (as defined by them) within a reasonable period of time in which to consider an advance care plan as valid.2 Moreover, given the data on the number of incapacitated individuals who did not receive the intervention and whose wishes were not met (13%), as few as approximately 1% of high-risk individuals could directly benefit from an advance care directive. If, as the study suggests, preparing an advance care directive will have little overall influence on choices about life-sustaining treatment, the question arises as to the need for allocating resources to this procedure, especially in individuals at low risk of having to make end-of-life decisions. Although clinicians may readily recall troubling situations in which advance care directives were sorely needed, such as the Terri Schiavo case, few similar events may actually occur. Nevertheless, an earlier randomized controlled trial showed beneficial outcomes of advance care planning in multiple aspects of family well-being.3 Previous researchers have suggested that the original goal of advance care planning—assuring end-of-life care congruent with the incapacitated individuals wishes—should be of secondary importance.4, 5 Instead, they advise focusing on the value of early communication about end-of-life care in preparing anyone for future end-of-life decisions and in assisting all families and healthcare proxies when faced with difficult choices about life-sustaining care. Conflict of Interest: None. Author Contributions: Interpretation of data and preparation of manuscript. Sponsor's Role: None.

Patient-centred ACP and cancer in Spain: insights on cultural barriers and clues to move forward

Patient-Centered Advance Care Planning (PC-ACP) is a desirable goal as part of all care. Customising it to major illness trajectories is a wise organisational move based in common sense and...

Effect of a Disease‐Specific Advance Care Planning Intervention on End‐of‐Life Care

To compare patient preferences for end-of-life care with care received at the end of life. A randomized controlled trial was conducted with individuals with congestive heart failure or end-stage renal disease and their surrogates who were randomized to receive patient-centered advance care planning (PC-ACP) or usual care. Two centers in Wisconsin with associated clinics and dialysis units. Of the 313 individuals and their surrogates who completed entry data, 110 died. During PC-ACP, the trained facilitator assessed individual and surrogate understanding of and experiences with the illness, provided information about disease-specific treatment options and their benefits and burden, assisted in documentation of treatment preferences, and assisted the surrogates in understanding the patient's preferences and the surrogate's role. Preferences were documented and compared with care received at the end of life according to surrogate interviews or medical charts. Patients (74%) frequently continued to make their own decisions about care to the end. The experimental group had fewer (1/62) cases in which patients' wishes about cardiopulmonary resuscitation were not met than in the control group (6/48) but not significantly so. Significantly more experimental patients withdrew from dialysis than controls. Patients and their surrogates were generally willing to discuss preferences with a trained facilitator. Most patients received the care they desired at end of life or altered their preferences to be in accord with the care they could receive. A larger sample with surrogate decision-makers is needed to detect significant differences.

“Our best hope is a cure.” Hope in the context of advance care planning

Advance care planning (ACP) has the potential to enhance end-of-life care, yet often fails to live up to that potential. This qualitative interpretive study was designed to explore the process and outcomes of ACP using the patient-centered Advance Care Planning Interview (PC-ACP) developed by the Respecting Choices® program in Wisconsin. Patients diagnosed with advanced lung cancer and close family members were recruited. Nine family dyads participated in the PC-ACP interview, which was audio-recorded. Follow-up interviews took place 3 and 6 months after the PC-ACP interview and were also recorded. Thematic analysis was conducted on transcribed interviews using constant comparison. Analysis showed that hope was a significant theme in the ACP process and this article reports on that theme. Hope for a cure was one of many hopes that supported quality of life for the participant dyads. Three themes were identified: hope is multifaceted, hope for a cure is well considered, and hope is resilient and persistent. The seeming paradox of hoping for a cure of an incurable cancer did not interfere with the process of ACP. The dyads engaged in explicit discussions of end-of-life scenarios and preferences for care. ACP did not interfere with hope and hope for a cure did not interfere with ACP. Concerns about false hope are called into question. The principle of honoring hope is not necessarily in conflict with the principle of truthful communication. This is clinically significant, as the findings suggest we need not disrupt hope that we think of as "unrealistic" as long as it supports the family to live well. Further, ACP can be successful even in the context of hoping for a cure.

Effects of an intervention to improve communication about end-of-life care among African Americans with chronic kidney disease

The prevalence of and mortality from chronic kidney disease (CKD) are high among African Americans. Interventions to improve knowledge of the likely illness course and the benefits and risks of life-sustaining treatment at the end-of-life are needed for African Americans with CKD and their surrogate decision makers. Nineteen African Americans with stage 5 CKD and their surrogates were randomized to either patient-centered advance care planning (PC-ACP) or usual care. PC-ACP dyads showed greater improvement in congruence in end-of-life treatment preferences ( p < .05) and higher perceived quality of communication ( p < .05) than do control dyads, but the two groups did not differ on other primary outcomes or acceptability measures, such as perceptions of cultural appropriateness. At posttest, 80% of patients in the intervention group reported that they would choose to continue all life-sustaining treatments in a situation of a low chance of survival, whereas 28.6% of patients in the control group reported that they would make that choice. At posttest, 90% of patients in the intervention group reported that they would choose to undergo cardiopulmonary resuscitation even if the chance of surviving the attempt would be low, whereas 57% of patients in the control group reported that they would make that choice. PC-ACP can be effective in improving patient and surrogate congruence in end-of-life treatment preferences. However, the results suggest a need for further improvements in the intervention to enhance cultural appropriateness for African Americans with CKD.

An Update on the Representational Approach to Patient Education

To provide an update on the representational approach to patient education. The representational approach to patient education to guide a wide-range of educational interventions. Four intervention trials based on the representational approach are discussed: the representational intervention to decrease cancer pain (RIDcancerPain), patient-centered advance care planning (PC-ACP), an individualized representational intervention to improve symptom management (IRIS), and the written representational intervention to ease symptoms (WRITE symptoms). Findings from these trials show that interventions based on the representational approach are efficacious. Results of these trials have provided information for strengthening the approach and extending it to novel clinical problems and delivery modes. The representational approach to patient education appears to be adequately flexible to guide interventions in different patient care situations, while also sufficiently structured to be replicable and testable.

A Randomized, Controlled Trial to Improve Advance Care Planning Among Patients Undergoing Cardiac Surgery

Although many healthcare providers and researchers consider it necessary to assist patients with end-stage chronic illnesses to plan for the end of life, they tend to avoid discussing end-of-life issues with patients before major surgery. Consequently, surgical patients and their families generally have insufficient knowledge to make plans in case of life-threatening complications. The objective of this study was to evaluate short-term effects of Patient-Centered Advance Care Planning (PC-ACP). Thirty-two dyads of patients undergoing cardiac surgery and their surrogates were randomly assigned to receive either the PC-ACP intervention (PC-ACP) or usual care. Measures studied were patient-surrogate congruence regarding goals for future medical care, patient and surrogate knowledge of advance care planning and anxiety, and patient decisional conflict. Congruence and anxiety were measured before and after the intervention. Decisional conflict and knowledge of advance care planning were measured after the intervention. Compared with the control group, PC-ACP significantly improved patient-surrogate congruence (Delta=1.27, P<0.01) and reduced patients' decisional conflict (Delta=-0.77, P<0.05). Anxiety change (pre/post) did not differ between treatment and control groups. No difference in knowledge of advance care planning was found between the 2 groups. The PC-ACP can be an effective approach to advance care planning. Its specificity and relevance to patients' actual medical conditions (as exemplified by its plans for potential complications related to cardiac surgery) can lead to greater patient-surrogate congruence without increasing decisional conflict and anxiety.

An evaluation of the Decisional Conflict Scale for measuring the quality of end-of-life decision making

Objective Researchers and clinicians acknowledge the complexity of planning for future medical treatment desired in the event of incapacitation. Unfortunately, many attempts to evaluate the quality of such difficult planning have been stymied by the lack of measures that can be shown to have validity. This study examines the psychometric characteristics of the Decisional Conflict Scale (DCS) when used as a measure of patients’ evaluation of their end-of-life decision-making process. Methods This evaluation used the combined data from two independent samples in which 59 outpatients with a life-threatening illness and their surrogate decision makers were assigned to receive, a decision aid intervention, the patient-centered advance care planning (PcACP), or usual care only. Results Internal consistency for the DCS in the end-of-life decision-making context was high. The DCS demonstrated convergent, construct, and discriminant validity based on the total scale scores. Conclusion The DCS appears to be a viable research instrument for measuring the quality of end-of-life decision making. However, the uncertainty subscale showed a weak discriminating ability and lack of association with the two other subscales, the modifiable factors contributing to uncertainty and the effectiveness of the decision making. Practice implications The findings of the study can be useful for measuring decisional conflict in individuals with serious illness facing end-of-life decision making.

Shifting the focus of advance care planning: using an in-depth interview to build and strengthen relationships.

341 WHEN I JOINED THE Respecting Choices® Advance Care Planning (ACP) team at Gundersen Lutheran Medical Center in La Crosse, Wisconsin, almost 4 years ago, I was assigned the responsibility of designing a comprehensive curriculum for this program that could be taken to other communities to assist them in replicating the success of the nationally recognized La Crosse experience.1 Concurrently, the quality improvement team at Gundersen Lutheran (a tertiary teaching hospital providing health care to patients throughout western Wisconsin, southeastern Minnesota, and northeastern Iowa) identified a variety of gaps in the current program, and wanted to improve outcomes in such areas as early initiation of ACP in the outpatient setting, meeting the needs of different patient populations, and strengthening the facilitation skills of our professionals. What emerged has been an evolution and expansion of the principles and practices embedded in our existing program. This article describes the rationale for developing a patient-centered ACP interview for persons suffering from chronic life-threatening illness and their surrogate decision makers, offer a careful exploration of one case example from a pilot study we conducted with 27 patient-surrogate pairs, and elucidate the lessons we have learned thus far from our efforts to implement this fortified version of advance care planning. This in-depth effort to implement meaningful conversations with people who are at risk of serious complications demonstrates an evolution of the field of ACP. It “raises the bar” and visualizes what can be achieved if ACP is transformed from a document-driven, decision-focused event to one that emphasizes a relational, patient-centered process. The outcomes of such a transformation will not be measured by increasing the number of completed advance directives, but by improving satisfaction with the end-of-life experience.