Advance Care Planning Preferences Research Articles

Systems for electronic documentation and sharing of advance care planning preferences: a scoping review

Digital approaches to support advance care planning (ACP) documentation and sharing are increasingly being used, with a lack of research to characterise their design, content, and use. This study aimed to characterise how digital approaches are being used to support ACP documentation and sharing internationally. A scoping review was performed in accordance with the JBI (formerly Joanna Briggs Institute) guidelines and the PRISMA 2020 checklist, prospectively registered on Open Science Framework (https://osf.io/xnrg3). MEDLINE, EMBASE, PsycINFO, ACM Digital, IEEE Xplore and CINAHL were searched in February 2023. Only publications in English, published from 2008 onwards were considered. Eligibility criteria included a focus on ACP and electronic systems. Out of 2,393 records, 34 reports were included, predominantly from the USA (76.5%). ACP documentation is typically stored in electronic health records (EHRs) (67.6%), with a third (32.4%) enabling limited patient access. Non-standard approaches (n = 15;44.1%) were the commonest study design of included reports, with outcome measures focusing on the influence of systems on the documentation (i.e. creation, quantity, quality, frequency or timing) of ACP information (n = 23;67.6%). Digital approaches to support ACP are being implemented and researched internationally with an evidence base dominated by non-standard study designs. Future research is needed to extend outcome measurement to consider aspects of care quality and explore whether the content of existing systems aligns with aspects of care that are valued by patients.

IT-assisted comprehensive geriatric assessment for residents in care homes: quasi-experimental longitudinal study

BackgroundFrailty interventions such as Comprehensive Geriatric Assessment (CGA) can provide significant benefits for older adults living with frailty. However, incorporating such proactive interventions into primary care remains a challenge. We developed an IT-assisted CGA (i-CGA) process, which includes advance care planning (ACP). We assessed if, in older care home residents, particularly those with severe frailty, i-CGA could improve access to advance care planning discussions and reduce unplanned hospitalisations.MethodAs a quality improvement project we progressively incorporated our i-CGA process into routine primary care for older care home residents, and used a quasi-experimental approach to assess its interim impact. Residents were assessed for frailty by General Practitioners. Proactive i-CGAs were completed, including consideration of traditional CGA domains, deprescribing and ACP discussions. Interim analysis was conducted at 1 year: documented completion, preferences and adherence to ACPs, unplanned hospital admissions, and mortality rates were compared for i-CGA and control (usual care) groups, 1-year post-i-CGA or post-frailty diagnosis respectively. Documented ACP preferences and place of death were compared using the Chi-Square Test. Unplanned hospital admissions and bed days were analysed using the Mann-Whitney U test. Survival was estimated using Kaplan-Meier survival curves.ResultsAt one year, the i-CGA group comprised 196 residents (severe frailty 111, 57%); the control group 100 (severe frailty 56, 56%). ACP was documented in 100% of the i-CGA group, vs. 72% of control group, p < 0.0001. 85% (94/111) of severely frail i-CGA residents preferred not to be hospitalised if they became acutely unwell. For those with severe frailty, mean unplanned admissions in the control (usual care) group increased from 0.87 (95% confidence interval ± 0.25) per person year alive to 2.05 ± 1.37, while in the i-CGA group they fell from 0.86 ± 0.24 to 0.68 ± 0.37, p = 0.22. Preferred place of death was largely adhered to in both groups, where documented. Of those with severe frailty, 55% (62/111) of the i-CGA group died, vs. 77% (43/56) of the control group, p = 0.0013.ConclusionsProactive, community-based i-CGA can improve documentation of care home residents’ ACP preferences, and may reduce unplanned hospital admissions. In severely frail residents, a mortality reduction was seen in those who received an i-CGA.

I kua na'u "Let me carry out your last wishes" Clinical trial protocol to promote advance care planning among native Hawaiian populations

Advance Care Planning (ACP) is a communication process about serious illness decision making designed to inform patients of possible medical options. Native Hawaiians consistently have low rates of ACP and low use of palliative and hospice care services. Our multidisciplinary community and research group partnered to create I kua na'u “Let Me Carry Out Your Last Wishes,” an ACP intervention featuring culturally tailored videos and are now testing its efficacy. Focus groups and informant interviews were conducted with Native Hawaiian community members to ensure the curriculum honored the history, opinions, and culture of Native Hawaiians. Native Hawaiian culture has traditionally been an oral culture; the spoken word transmitted the moʻolelo, stories, traditions, histories and genealogies, which merges seamlessly with video media. The I kua na'u intervention included multiple educational sessions enhanced with videos (informational and personal). The specific aims are to compare ACP knowledge (primary outcome) and readiness for ACP engagement, ACP preferences, decisional conflict, and ACP completion rates via electronic medical record review (secondary outcomes) in 220 Native Hawaiians over age 55 in: (a) a randomized controlled trial of 110 people recruited from ambulatory clinics, and (b) a pre-post study design among 110 people living on Hawaiian Homestead communities located on lands set aside for Native Hawaiians or assisted living.Our protocol aims to evaluate the efficacy of our video-based educational intervention for Native Hawaiians to support decision making in this community and decrease disparities in serious illness care.Clinical Trial Registration Number: NCT04771208

Are We on the Same Page? Exploring Pediatric Patients' Involvement With Advance Care Planning.

According to the UN Convention on the Rights of the Child, children have a right to be heard. This also applies to patients in pediatric palliative care (PPC). The aim of this literature review was to explore what is known about the involvement of children (<14 years of age), adolescents and young adults (AYAs) in advance care planning (ACP) in PPC. A search was conducted in PubMed including publications from January 1, 2002 until December 31, 2021. The identified citations had to report on ACP or related terms in any PPC context. A total of n=471 unique reports were identified. Final inclusion criteria were met by n=21 reports, including children and AYAs with diagnoses related to oncology, neurology, HIV/AIDS and cystic fibrosis. Nine reports were from randomized controlled studies, investigating ACP methodology. The main findings were: 1) caregivers are included more often than children and adolescents in ACP, 2) some studies indicate an incongruence between AYAs and their caregivers regarding ACP and treatment preferences, 3) although the process evokes a wide range of emotions, ACP is perceived as helpful by many AYAs CONCLUSION: The majority of studies about ACP in PPC do not include children and AYAs. Whether incongruence reported in some studies between AYAs and their caregivers regarding treatment preferences could be reduced by ACP should be further explored, including the involvement of children and adolescents in ACP, and the impact of pediatric ACP on patient outcomes in PPC.

Challenges in providing end-of-life care consistent with documented patient preferences.

Providing end-of-life care consistent with patient preferences is a major goal for advance care planning (ACP) programs. Despite the promise, many trials have failed to show that ACP improves patients' likelihood of receiving end-of-life care consistent with preferences. The reasons and challenges to facilitating EOL care consistent with patients' documented ACP preferences remain unclear. Using data from Singapore's national ACP program evaluation, we aimed to understand health care professionals' (HCPs) perceived challenges in facilitating end-of-life care consistent with patients' documented ACP preferences. We conducted 21 focus group discussions and 1 in-depth interview with HCPs trained in ACP facilitation and advocacy and involved in national ACP program implementation within public hospitals, public primary care clinics and nursing homes in Singapore. Data collection was stratified based on HCPs' role within the ACP program (ACP leads/champions, ACP facilitators, nursing home heads/ACP administrative staff) and type of institution (hospital, primary care clinic and nursing home). Each discussion included 1 to 8 participants. Discussions were audio recorded, transcribed verbatim and checked for accuracy. We analysed the data using thematic analysis framework in Nvivo 11. A total of 107 participants attended one of the discussions of which more than a third (35%) were physicians. We conceptualized five themes describing the challenges in implementing end-of-life care consistent with patients' documented ACP preferences: (I) conflict between honouring preference for comfort care and extending life; (II) ACP not reflecting patients' changing preferences or medical condition; (III) lack of health system resources to support and honour patient preferences; (IV) barriers to retrieval of ACP documents; and (V) rigidity of ACP documentation. Although providing end-of-life care consistent with preferences may not always be feasible, future ACP programs should involve physicians and families for ongoing conversations, frequently update patients' ACP documents, involve clear and well-resourced plans for implementing patients' preferences, and incorporate flexible electronic systems to capture ongoing ACP conversations.

Gynecologic oncology patient perspectives and knowledge on advance care planning: A quality improvement intervention

ObjectivesAssess and improve advance care planning (ACP) awareness and uptake among gynecologic oncology patients. MethodsUsing a quality improvement Plan-Do-Check-Act framework, we completed a single institution needs assessment and intervention. The needs assessment was a 26-question survey assessing baseline ACP knowledge and preferences of gynecologic oncology patients. We used this survey to implement an outpatient intervention in which patients were offered ACP resources (pamphlet, discussion with their gynecologic oncologist, and/or social work referral). We conducted a post-intervention survey among patients who had and had not received ACP resource(s) to assess whether our intervention increased ACP knowledge, discussions, or uptake. ResultsAmong 106 patients surveyed in the needs assessment, 33 % had ACP documents, 26 % had discussed ACP with a physician, and 82 % thought discussing ACP was important. The majority preferred these conversations in the outpatient setting (52 %) with their gynecologic oncologist (80 %) instead of nurses or trainees. In the intervention, 526 patients were offered ACP resources. Compared to women who did not receive resources (n = 324), patients who received ACP resource(s) (n = 202) were more likely to have ACP discussions with their gynecologic oncologist (38 % vs 68 %, P = 0.001) and had greater proficiency regarding how to create ACP documents (median score 5/10 vs 8/10, P = 0.048), although they were no more likely to have ACP documented in their electronic medical record (27 % vs 9 %, p = 0.08). ConclusionsACP uptake among gynecologic oncology patients is low, but ACP discussions with an oncologist during outpatient visits are important to patients and improve their knowledge regarding completing ACP documents.

"I'm in My Feelings Now": Examination of Advance Care Planning Video Declarations by People with Advanced Cancer from a Safety Net Hospital.

Background: Advance care planning (ACP) is underutilized among those with advanced cancer, leading to the potential of not receiving goal-concordant care. Objectives: To understand the experience of patients in creating a video declaration (ViDec) of their ACP preferences and their family member/caregivers' perceptions after viewing their ViDec. Design: Qualitative study among patients and family members/caregivers. Setting/Subjects: Patients were recruited from a large safety net hospital in the United States. Patients with any type of advanced cancer were enrolled to create a ViDec and participate in an individual interview. Patients also identified a family member/caregiver to participate. Measurements: Content and perceptions of usefulness of ViDecs among patients and family members/caregivers. Results: In total, 32 patients participated. Patients had a mean age of 61 (10) years, 15 (47%) were women, 14 (44%) were Black or African American, and 12 (37%) had a high school education or less; 25 family members/caregivers participated. Across all ViDecs, the most common theme pertained to ACP for preferred medical treatments (97%). We describe three case studies of patient and caregiver pairs to represent salient dimensions of our data: (1) high perceived usefulness of ViDec, (2) populations at risk for not receiving goal-concordant care, and (3) varied responses to ViDec among family members/caregivers. Recommendations to improve the ViDec process included providing structured prompts to patients. Conclusions: These case studies highlight the potential high-perceived usefulness of ViDecs across patients and caregivers. ViDecs have the potential to improve care among patients with advanced cancer.

Advance Care Planning Preferences in Hong Kong: A Cross-Sectional Study in a Community.

(1) Background: Hong Kong is experiencing population aging, but there is little research on advance care planning. This research asks for community-dwelling older adults’ views on advance care planning in order to provide a different angle to the results collected from nursing homes and hospitals. (2) Methods: The targeted respondents were people aged 55 or above. A total of 282 questionnaires were collected using the random sampling method. Respondents were asked whether they would make an advance care plan, whether they would prepare for their death, and whether they had received any death education; they were also given eight statements related to treatments and decision making. (3) Results: The study found that only 17% of the respondents would like to use advance care planning, even after it was explained to them. Advance care planning favorers would be more likely to insist on having wills and would be more likely to trust doctors rather than family members. (4) Conclusions: The results also suggested that the medical care and social support for end-of-life patients should be improved. The results also showed the importance of medical professionals as they showed that respondents wanted advice on end-of-life decision-making from medical professionals.

Advance Care Planning Preferences for Adolescents With Cardiac Disease.

Adolescents with cardiac disease are at risk for life-changing complications and premature death. The importance of advance care planning (ACP) in adults with congenital heart disease and in pediatric patients with HIV and cancer has been demonstrated. ACP preferences of adolescents with heart disease have not been evaluated. We describe ACP preferences of adolescents with heart disease and compare with those of their caregivers. Outpatient adolescents aged 12 to 18 years with heart failure, cardiomyopathy, heart transplantation, or who were at risk for cardiomyopathy, as well as their caregivers, completed self-administered questionnaires which evaluated participants' opinions regarding content and timing of ACP discussions, preferences for end-of-life communication, and emotional responses to ACP. Seventy-eight adolescents and 69 caregivers participated, forming 62 adolescent-caregiver dyads. Adolescents and caregivers reported that adolescent ACP discussions should occur early in the disease course (75% and 61%, respectively). Adolescents (92%) wanted to be told about terminal prognosis, whereas only 43% of caregivers wanted the doctor to tell their child this information. Most adolescents (72%) and caregivers (67%) anticipated that discussing ACP would make the adolescent feel relieved the medical team knew their wishes. Most caregivers (61%) believed that adolescents would feel stress associated with ACP discussions, whereas only 31% of adolescents anticipated this. Adolescents and their caregivers agree that ACP should occur early in disease course. There are discrepancies regarding communication of prognosis and perceived adolescent stress related to ACP discussions. Facilitated conversations between patient, caregiver, and providers may align goals of care and communication preferences.

Making the Informal Formal: Discussing and Completing Advance Care Plans in Care Dyads with Cognitive Impairment.

Background: Discussing advance care planning (ACP) with care partners may be a steppingstone to the completion of advance directives (ADs) for persons with cognitive impairment (PwCIs). Objectives: To examine whether PwCI-reported occurrence of and PwCI-care partner agreement about ACP discussions are associated with completion of ADs. Design and Subjects: We conducted a secondary, cross-sectional analysis of data from 1672 PwCI-care partner dyads in the BLINDED study. PwCIs were Medicare beneficiaries in the US, aged >65 years, and diagnosed with mild cognitive impairment or dementia. Care partners were identified by PwCIs as being most involved in their health care. Measurements: PwCIs' completion of ADs was determined by 1 or more affirmative responses to dichotomous indicators for formalizing a living will, medical directive, or durable power of attorney for health care. Discussion occurrence was based on PwCI reports and agreement between PwCI and care partner reports of prior conversations about PwCIs' ACP preferences between PwCIs and care partners. Results: In logistic regression models adjusted for PwCI and care partner characteristics, PwCIs who had (vs. had not) discussed ACP were 10% more likely to complete ADs. PwCIs from dyads agreeing (vs. disagreeing) a discussion occurred were 7% more likely to complete ADs. PwCIs from care dyads in agreement (vs. disagreement) about non-discussion were 11% less likely to formalize ADs. Conclusions: Discussing ACP with care partners plays a direct, positive role in completing ADs among PwCIs. Health care providers who approach ACP as a dyadic, communicative decision-making process from the outset may facilitate PwCIs' uptake of ADs.

Review of Religious Variables in Advance Care Planning for End-of-Life Care: Consideration of Faith as a New Construct

Religion and spirituality have long been considered important social determinants of human health, and there exists an extensive body of research to support such. End-of-life (EOL) may raise complex questions for individuals about religious and spiritual (R/S) values guiding advance care planning (ACP) and EOL care decisions, including the provision of spiritual care. This commentary will review the history and current national trends of ACP activities for EOL, principally within the United States. It will describe the relationship of religious variables and the attributes of selected research instruments used to study religious variables on ACP and EOL preferences. The review also summarizes unique ACP challenges for patients with neurocognitive disorders and severe mental illness. Findings disclose that higher levels of religiosity, reliance on religious coping, conservative faith traditions, and “belief in God's control over life's length and divine intervention have lower levels of ACP and more intensive EOL care preferences, although the provision of spiritual spiritual care at EOL mitigates intensive EOL care. Based upon the curated evidence, we propose an epistemological justification to consider “faith” as a separately defined religious variable in future ACP and EOL research. This review is relevant to geriatric psychiatrists and gerontological health care professionals, as they may be part of multidisciplinary palliative care teams; provide longitudinal care to patients with neurocognitive disorders and severe mental illness; and may provide diagnostic, emotional, and therapeutic services for patients and families who may struggle with EOL care decisions.

Barriers and Facilitators to Advance Care Planning among Chinese Patients with Advanced Cancer and Their Caregivers.

Background: Chinese American adults experience health disparities at the end of life. Culturally tailored advance care planning (ACP) may promote goal-concordant care across the continuum of serious illness. However, seriously ill Chinese Americans' preferences for ACP remain unknown. Objective: To explore barriers and facilitators to ACP among Chinese patients with advanced cancer and their caregivers. Design: Informed by socioecological theory, we conducted an exploratory qualitative study using semistructured interviews that were thematically analyzed. Setting/Participants: We recruited participants at one U.S. comprehensive cancer center. Of 27 eligible patients approached, we recruited 20 patients (74.1%) and 8 accompanying caregivers. Overall, participants were middle aged (55.6 ± 13.5 years), 60.7% female, 85.7% partnered/married, 89.3% college educated, and had low acculturation (mean Suinn-Lew Asian Self-Identify Acculturation = 2.0 ± 1.6/5.0). More patients were privately insured (35%) than self-pay (30%), Medicare (25%), and Medicaid (10%). Caregivers were split between "spouse" and "child." Results: Findings highlight participants' trust in their clinicians and the study institution as primary supports for clinicians to lead ACP. However, participants' preconceptions of clinicians' professional responsibilities and participants' belief in an uncertain future may hinder an open discussion of goals and values for future medical care. A key moderating factor in how participants view ACP may be their level of acculturation to local care, behavioral, and communication norms. Conclusions: Chinese patients may prefer a routinized clinician-led ACP approach that supports their actionable priorities in the present by leveraging patient-clinician trust, gauging acculturation level, and using indirect communication strategies. Future studies should investigate preferred communication strategies to support in-the-moment care planning.

Ethical Issues in the Care of Emerging Adults in Pediatric Intensive Care Units.

Ethical Issues in the Care of Emerging Adults in Pediatric Intensive Care Units.

Public knowledge, preferences and experiences about medical substitute decision-making: a national cross-sectional survey

ObjectiveTo describe the Australian adult public’s knowledge and experiences regarding substitute decision-making for medical decisions and their preferences for obtaining information about the substitute decision-maker (SDM) role.MethodsThis is a national...

Barriers and Facilitators of Advance Care Planning for Older Adults with Sickle Cell Disease

Background Life expectancy for individuals with sickle cell disease (SCD) has improved significantly in the last 50 years, creating a new population of older adults with SCD; however, life expectancy of adults with SCD is still up to 30 years shorter than African Americans in the general population and much lower than whites. SCD complications cause significant morbidity, requiring patients to make complex decisions about end of life care. Yet, there is a paucity of literature on SCD advance care planning (ACP), to guide providers on how to address ACP in this population. Thus, the purpose of this study was to assess barriers and facilitators to ACP for older adults with SCD. Methods We recruited 19 older adults with SCD (age &amp;gt; 50) from a comprehensive SCD center in the Southeastern United States. We conducted semi-structured interviews by phone or in person. Interview questions addressed aging with SCD, living beyond SCD life expectancy, experience with health care, experience with end of life care, comfort discussing death and end of life care, presence and nature of prior ACP discussions, and preferences for future ACP discussions. Audio-recorded interviews were transcribed verbatim. The data were analyzed using conventional content analysis. Results The mean age of participants was 57 years (range 50-71) and 47% (n = 9) were female. Most participants were diagnosed with SCD several years after birth and were told that they were not expected to live past age 18. Four of 19 participants had written advanced directives. Most participants were comfortable and willing to discuss ACP and thought that SCD ACP discussions should ideally start in early adulthood. Barriers to ACP included lack of communication, inappropriate contexts for ACP discussions, lack of trust, difficulty navigating ACP documents, and spirituality (Figure 1). Lack of communication included limited to no communication from trusted healthcare providers about ACP preferences. Inappropriate contexts for ACP discussions included being approached at difficult times by unfamiliar providers, such as being asked to complete advance directives while sick in the hospital by a provider who did not know the patient well. Trust was a barrier, as several participants were concerned that being asked about ACP while sick meant providers were giving up on them; others were unsure if they could trust providers or family members to carry out their end of life wishes as written. They reported difficulty navigating ACP documents and several participants incorrectly assumed a lawyer was required to finalize ACP documents. Finally, spirituality was a barrier as some participants reported that end of life planning was inconsistent with their religious beliefs. Facilitators of ACP included discussion at the right time, provider familiarity and knowledge, presence of family, and assistance in completing ACP documents. Participants expressed a desire to have an opportunity to openly communicate their end of life wishes with their provider when they were not sick in the hospital. They preferred discussing ACP with a provider whom they had a good relationship with, was familiar with their history, and they perceived was knowledgeable about SCD. Participants identified their SCD provider, PCP, or pulmonologist as suitable providers to talk to about ACP. Most preferred their family to be present during the ACP discussion. Those that had already completed advance directives at the time of the study received assistance from someone outside the health system to do so, such as help from their church, a lawyer, or their family. Conclusion Older adults with SCD expressed a desire for communication about ACP from trusted providers who are knowledgeable about SCD and want to have ACP conversations when they are feeling well. In addition, having the patient's family present and giving them assistance may increase the patient's comfort in completing their advance directives. The lack of communication from trusted providers or communication from unfamiliar providers about ACP during hospitalizations for acute complications are major barriers to creating advance directives for older adults with SCD. Future research is needed to obtain providers' perspectives on barriers to initiating conversations about ACP with adults with SCD. We will use these results to inform development of patient-centered and culturally-sensitive interventions to improve ACP in adults with SCD. Disclosures Strouse: Takeda: Research Funding.

Recommendations for advance care planning in adults with congenital heart disease: a position paper from the ESC Working Group of Adult Congenital Heart Disease, the Association of Cardiovascular Nursing and Allied Professions (ACNAP), the European Association for Palliative Care (EAPC), and the International Society for Adult Congenital Heart Disease (ISACHD).

Survival prospects in adults with congenital heart disease (CHD), although improved in recent decades, still remain below expectations for the general population. Patients and their loved ones benefit from preparation for both unexpected and predictable deaths, sometimes preceded by a prolonged period of declining health. Hence, advance care planning (ACP) is an integral part of comprehensive care for adults with CHD. This position paper summarizes evidence regarding benefits of and patients' preferences for ACP and provides practical advice regarding the implementation of ACP processes within clinical adult CHD practice. We suggest that ACP be delivered as a structured process across different stages, with content dependent upon the anticipated disease progression. We acknowledge potential barriers to initiate ACP discussions and emphasize the importance of a sensitive and situation-specific communication style. Conclusions presented in this article reflect agreed expert opinions and include both patient and provider perspectives.

Anxious, Depressed, and Planning for the Future: Advance Care Planning in Diverse Older Adults.

To determine whether depression and anxiety are associated with advance care planning (ACP) engagement or values concerning future medical care. Cross-sectional. English- and Spanish-speaking patients, aged 55 years and older, from a San Francisco, CA, county hospital. Depression was measured by the Patient Health Questionnaire 8-item scale, and anxiety was measured by the Generalized Anxiety Disorder 7-item scale, using standardized cutoffs of 10 or more for moderate-to-severe symptoms. ACP engagement was measured using validated surveys of ACP behavior change (e.g., self-efficacy and readiness; mean five-point Likert score) and ACP actions (e.g., ask, discuss, and document wishes; 0- to 25-point scale), with higher scores representing higher engagement. In addition, we asked a question about valuing life extension ("some health situations would make life not worth living"). We used adjusted linear and logistic regression. Mean age of 986 participants was 63 years, 81% were non-White, 39% had limited health literacy, 45% were Spanish speaking, 13% had depression, and 10% had anxiety. After adjustment for demographic and health status variables, participants who were depressed versus not depressed had higher ACP behavior change scores (0.2 points; 95% confidence interval (CI) = 0.06-0.38; P = .007), higher ACP action scores (1.5 points; 95% CI = 0.51-2.57; P = .003), and higher odds of not valuing life extension (odds ratio (OR) = 2.5; 95% CI = 1.5-4.3; P < .001). Results were similar in participants with versus without anxiety (ACP behavior change: 0.2 points; 95% CI = 0.05-0.40; P = .01; ACP action scores: 1.2 points; 95% CI = 0.14-2.32; P = .028; odds of not valuing life extension: OR = 2.3; 95% CI = 1.3-3.9; P = .004). Depression and anxiety were associated with greater ACP engagement and not valuing life extension. Although the direction of association between ACP engagement and values with anxiety and depression cannot be determined in this cross-sectional study, these conditions may influence ACP preferences. Future studies should assess whether changes in anxiety or depression affect ACP preferences over time.

Impact of advance care planning on the place of death for cancer patients: A retrospective cohort study.

e24007 Background: Place of death is an important indicator of quality of end-of-life care (EOLC). Most patients do not want to die in hospital and hospital deaths are costly to healthcare organisations. Advance care planning (ACP) includes discussions about where patients want to die. Cancer patients often have a distinct illness trajectory with a clear terminal phase, enabling opportunities for EOLC planning. This work aims to explore the impact of ACP on the outcomes and place of death for cancer patients. Methods: A retrospective decedent cohort study of 10,727 cancer patients with a Coordinate My Care (CMC) record created 2011-2019. CMC is a digital platform that enables patients to record, revise and share their ACP and EOLC preferences with primary, secondary and urgent healthcare providers in London. Logistic regression analysis was applied to examine the relationship between in-hospital death and a range of individual characteristics and EOLC preferences. Results: Only 1% chose hospital as their preferred place of death. Overall, 71% died in their place of preference. Home (42%) was the most common place of death, while 20% died in hospital. The likelihood in-hospital death is positively associated with being older (OR = 1.12, p &lt; 0.1), hospital being the preferred place of care (OR = 2.56, p &lt; 0.001), hospital being the preferred place of death (OR = 2.85, p &lt; 0.001) and if the preferred place of death is not recorded (OR = 1.32, p &lt; 0.001). By contrast, patients who are severely frail (OR = 0.61, p &lt; 0.001), who chose not to be resuscitated (OR = 0.56, p &lt; 0.001) and who have a ceiling of treatment for symptomatic rather than intensive hospital based treatments (OR = 0.40, p &lt; 0.001) are less likely to die in hospital. Conclusions: Most cancer patients prefer out-of-hospital death. Discussing, recording and sharing individual’s EOL preferences leads to better quality EOLC. Patient characteristics influence in-hospital deaths, but EOLC preferences exert stronger impact. Enabling cancer patients to die outside of hospital has positive implications for patients and their families and supports cost-effective use of healthcare resources.

Association of illness understanding with advance care planning and end-of-life care preferences for advanced cancer patients and their family members.

Little has been determined regarding the association between patients' and families' illness understanding and preferences for medical care. We aimed to evaluate the association of illness understanding with advance care planning (ACP) and preferences for end-of-life care, such as aggressive care, early palliative care (EPC), and hospice care, among advanced cancer patients and their family caregivers. Patients were recruited for a prospective cohort study at outpatient and inpatient facilities in nine university hospitals in Korea (n = 150), and their primary family caregivers were also asked to participate (n = 101). Data on ACP and end-of-life care preferences were collected only at baseline in the cohort study with optional questions and were used to analyze these study results. Patients with illness understanding were more likely to have documented physician orders for life-sustaining treatment (POLSTs) (adjusted odds ratio [aOR] of 4.94) and to have discussed ACP with their families (aOR 2.15) than those who did not. Being expected to live for several months, they were unlikely to prefer active treatment. Caregivers understanding patients' illness were more likely to write advance directives (ADs) and to discuss ACP; furthermore, they had already discussed ACP with family members. They did not prefer active treatment or life-sustaining treatments when their family members were expected to die within a few weeks. There was no significant association between illness understanding and preferences for EPC. Accurately recognizing an incurable disease is associated with preferences for more ACP and less aggressive care but not with preferences for EPC or hospice care among both advanced cancer patients and their family caregivers.

An examination of Latino advanced cancer patients' and their informal caregivers' preferences for communication about advance care planning: A qualitative study.

Latino-advanced cancer patients engage in advance care planning (ACP) at lower rates than non-Latino patients. The goal of the present study was to understand patients' and caregivers' preferred methods of communicating about ACP. Patients and caregivers were interviewed about cultural, religious, and familial beliefs that influence engagement in ACP and preferences for ACP communication. Findings highlighted that Latino patients respect doctors' medical advice, prefer the involvement of family members in ACP discussions with doctors, hold optimistic religious beliefs (e.g., belief in miracles) that hinder ACP discussions, and prefer culturally competent approaches, such as using their native language, for learning how to discuss end-of-life (EoL) care preferences. Key cultural, religious, and familial beliefs and dynamics influence Latino engagement in ACP. Patients prefer a family-centered, physician informed approach to discussing ACP with consideration and incorporation of their religious medical beliefs about EoL care. Promising targets for improving the communication of and engagement in ACP include integrating cultural and religious beliefs in ACP discussions, providing information about ACP from the physician, involving family members in ACP discussions and decision-making, and giving instructions on how to engage in ACP discussions.