Although Advance Care Planning Research Articles

The Impact of Socioeconomic Status on the Presence of Advance Care Planning Documents in Patients With Acute Cervical Spinal Cord Injury.

Patients presenting with spinal cord injury (SCI) often times have notable deficits or polytrauma and may require urgent decision making for early management. However, their presentation may affect decision-making ability. Although advance care planning (ACP) may help guide spine surgeons as to patient preferences, the rate at which they are available and disparities in ACP completion are still not understood. The objective of this study was to evaluate disparities in the completion of ACP among patients with acute SCI. All patients presenting with cervical SCI to the emergency department at an urban, tertiary level I trauma center from 2010 to 2021 were identified from a prospective database of all consults evaluated by the spine service. Each patient's medical record was reviewed to assess for the presence of ACP documents such as living will, power of attorney, or advance directive. Community-level socioeconomic status was assessed using the Distressed Communities Index. Bivariable and multivariable analyses were performed. We identified 424 patients: 104 (24.5%) of whom had ACP. Patients with ACP were older (64.8 versus 56.5 years, P = 0.001), more likely White (78.8% versus 71.9%, P = 0.057), and present with ASIA Impairment Scale grade A SCI (21.2% versus 12.8%, P = 0.054), although the latter two did not reach statistical significance. On multivariable logistic regression, patients residing in at-risk communities were significantly less likely to have ACP documents compared with those in prosperous communities (odds ratio [OR]: 0.29, P = 0.03). Although patients living in distressed communities were less likely to complete ACP compared with those in prosperous communities (OR 0.50, P = 0.066), this did not meet statistical significance. Female patients were also less likely to have ACP (OR: 0.43, P = 0.005). Female patients and those from at-risk communities are markedly less likely to complete ACP. Attention to possible disparities during admission and ACP discussions may help ensure that patients of all backgrounds have treatment goals documented.

Testing a Culturally Tailored Advance Care Planning Intervention (MY WAY) for an American Indian Tribe: Protocol for a Quasi-Experimental Waitlist Control Design.

American Indian and Alaska Native peoples experience poor end-of-life care, including more hospitalizations and lower use of hospice and do-not-resuscitate orders. Although advance care planning (ACP) can improve end-of-life care, ACP rates are disproportionately low in American Indians and Alaska Natives. We culturally tailored and delivered an existing evidence-based ACP program for an American Indian tribal community. Here, we present the protocol for assessing the intervention's feasibility and efficacy. We measured feasibility via participant recruitment, participants' evaluation (acceptability, appropriateness, comprehension, and satisfaction), and intervention fidelity. Recruitment was measured with participant screening, eligibility, enrollment, and retention. Participant's evaluation of the intervention was measured with surveys. Fidelity was measured with direct observation and the Make Your Wishes About You (MY WAY) Fidelity Checklist Tool. To assess the intervention's efficacy, we used a quasi-experimental waitlist control design with 2 cohorts who were surveyed each on three separate occasions. The intervention's efficacy was assessed by the following: ACP barriers and facilitators as well as ACP self-efficacy, readiness, and completion. A total of 166 participants were screened for eligibility; 11 were deemed ineligible, and 155 participants were enrolled in the study. Of those enrolled, 113 completed the intervention and will be included in subsequent analyses. We finalized data collection in January 2023, and analyses are underway. Study enrollment was successful, and we expect that participants will report high levels of acceptability, appropriateness, comprehension, and satisfaction with the intervention. We expect that the intervention was implemented with fidelity and will demonstrate decreases in ACP barriers and increases in ACP facilitators, self-efficacy, readiness, and completion. Enrolling over twice as many participants as we had hoped suggests that members of this tribal community are willing to engage in end-of-life ACP. We were able to implement a waitlist study design to show that a culturally tailored ACP program for a tribal community is feasible. ClinicalTrials.gov NCT05304117; https://clinicaltrials.gov/study/NCT05304117. DERR1-10.2196/50654.

INTERVZP - Interprofessional collaboration in Advance Care Planning: examining support needs across disciplines and settings

Background: Although advance care planning (ACP) can improve goal-oriented and goal-concordant care, it requires substantial interprofessional collaboration to ensure up-to-date information from patients and families is passed along across the care trajectory of the patient. The often-complex care trajectories of patients who would benefit most from ACP, as well as our fragmented care systems is hindering this.
 Aim: We aimed to explore how to better support a variety of professionals across care levels to improve advance care planning in their settings by exploring barriers related to ACP specifically, their support needs as well as potential strategies for improvement.
 Methods: We have carried out a targeted literature review in PubMed searching academic literature on advance care planning, chronic care or palliative care and interprofessional/multidisciplinary collaboration (and education); expert interviews with educators and trainers in interprofessional collaboration in healthcare (ie medicine, nursing, social work, obstetrics); and 3 semi-structured stakeholder workshops with a variety of professionals working in nursing homes, hospitals, and the home setting. Project progress and deliverables were safeguarded by an advisory group comprising users and stakeholders from various professional, policy, and umbrella organizations.
 Results: Fifteen published studies were included; 12 experts and 20 professionals participated. Various factors were found to hinder interprofessional collaboration in ACP: personal factors (eg. discipline: support staff, as opposed to registered nursing staff report higher, needs related to integration on the interdisciplinary team), interprofessional (eg. lack of clarity and appreciation of other’s roles), organizational (eg. no one taking the lead), interorganizational (eg. team fluidity/temporary teams) and system factors (eg. no unified electronic system). We formulated potential learning objectives that were triangulated with and complementary to existing general frameworks in interprofessional education (ie. IPEC, 5 bouwstenen IPSIG, Canmeds, EIPEN). We have visualized the patient journey of three case studies (in a hospital, nursing home and home setting) to graphically demonstrate how integrated care transitions between professionals, organizations and care levels can be improved and how (comprising tips and trigger questions that might stimulate professionals to share and receive the relevant information with and from others). 
 Next steps: Learning objectives can be easily integrated into existing education for health and social care professionals and is informative for subsequent interprofessional training development. Tools are currently being developed to support educators in doing this.

US clinicians' perspectives on advance care planning for persons with dementia: A qualitative study.

Although advance care planning (ACP) for persons with dementia (PWD) can promote patient-centered care by aligning future healthcare with patient values, few PWD have documented ACPs for reasons incompletely understood. The objective of this paper is to characterize the perceived value of, barriers to, and successful strategies for completing ACP for PWD as reported by frontline clinicians. Qualitative study using semi-structured interviews (August 2018-December 2019) with clinicians (physicians, nurse practitioners, nurses, social workers) at 11 US health systems. Interviews asked clinicians about their approaches to ACP with PWDs, including how ACP was initiated, what was discussed, how carepartners were involved, how decision-making was approached, and how decision-making capacity was assessed. Of 75 participating generalist and specialty clinicians from across the United States, 61% reported conducting ACP with PWD, of whom 19% conducted ACP as early as possible with PWD. Three themes emerged: value of early ACP preserves PWD's autonomy in cases of differing PWD carepartner values, acute medical crises, and clinician paternalism; barriers to ACP with PWD including the dynamic and subjective assessment of patient decision-making capacity, inconsistent awareness of cognitive impairment by clinicians, and the need to balance patient and family carepartner involvement; and strategies to support ACP include clarifying clinicians' roles in ACP, standardizing clinicians' approach to PWD and their carepartners, and making time for ACP and decision-making assessments that allow PWD and carepartner involvement regardless of the patients' capacity. Clinicians found early ACP for PWD valuable in promoting patient-centered care among an at-risk population. In sharing their perspectives on conducting ACP for PWD, clinicians described challenges that are amenable to changes in training, workflow, and material support for clinician time. Clinical practices need sustainable scheduling and financial support models.

Perceived dementia risk and advance care planning among older adults.

Although advance care planning (ACP) is beneficial if dementia develops, and virtually all older adults are at risk for this disease, older adults do not consistently engage in ACP. Health behavior models have highlighted the importance of perceived susceptibility to medical conditions in motivating behavior. Following these models, we sought to determine how often older adults believe they are not at risk of developing dementia and to examine the association between perceived dementia risk and ACP participation. We performed a cross-sectional study of community-dwelling adults without cognitive impairment, aged ≥65 years, who were interviewed for the Health and Retirement Study in 2016 and asked about their perceived dementia risk (n=711). Perceived dementia risk was ascertained with this question: "on a scale of 0 to 100, what is the percent chance that you will develop dementia sometime in the future?" We used multivariable-adjusted logistic regression to evaluate the association between perceived risk (0% versus >0%) and completion of a living will, appointment of a durable power of attorney for healthcare decisions, and discussion of treatment preferences. Among respondents, 10.5% reported a perceived dementia risk of 0%. Perceived risk of 0% was associated with lower odds of completing a living will (OR 0.53; 95% CI, 0.30-0.93) and discussing treatment preferences (OR 0.51; 95% CI, 0.28-0.93) but not appointment of a durable power of attorney (OR 0.77; 95% CI, 0.42-1.39). Many respondents with perceived dementia risk >0% had not completed ACP activities, including a substantial minority of those with perceived risk >50%. Older adults with no perceived dementia risk are less likely to participate in several forms of ACP, but the fact that many older adults with high levels of perceived risk had not completed ACP activities suggests that efforts beyond raising risk awareness are needed to increase engagement.

When do Physicians and Nurses Start Communication about Advance Care Planning? A Qualitative Study at an Acute Care Hospital in Japan

Although advance care planning (ACP) can lead to more patient-centered care, the communication around it can be challenging in acute care hospitals, where saving a life or shortening hospitalization is important priorities. Our qualitative study in an acute care hospital in Japan revealed when specifically physicians and nurses start communication to facilitate ACP. Seven physicians and 19 nurses responded to an interview request, explaining when ACP communication was initiated with 32 patients aged 65 or older. Our qualitative approach employed descriptive analysis to identify major themes, which included “initiation by patients” and “initiation by healthcare professionals.” In the latter case, seven specific triggers were identified: (1) when the patients’ medical condition changed in terms of symptom relief, (2) when the patients’ medical condition changed in terms of prognostic prediction, (3) when serious events occurred, (4) when a choice of treatment was presented, (5) when the location for end-of-life care was chosen, (6) when the patients’ cognitive function deteriorated, and (7) when serious events settled down. Within this group of healthcare professionals, physicians were more focused on changes in their patients’ medical condition, whereas nurses focused more on their patients’ desire for a long-term perspective. Nurses encouraged patients to consider ACP themselves, which developed into an approach to respect patients’ autonomy. In acute care hospitals, it appeared to be desirable to have an early discussion where patients could understand the significance ACP, which would matter even after their discharge from the hospital.

Impact of an Electronic Medical Record Alert on Code Status Documentation for Hospitalized Patients With Advanced Cancer.

Cardiopulmonary resuscitation in hospitalized patients with advanced cancer is associated with high rates of morbidity and mortality. Although advance care planning (ACP) in this population improves quality, patient satisfaction, hospice use, rates of harm, and health care costs, ACP documentation rates remain low. We observed changes in ACP documentation by internal medicine residents within a tertiary hospital's inpatient oncology service after a mandatory training module and enterprise-wide modification in electronic health medical records (EHMR). For patients admitted to the Cleveland Clinic oncology service, this 16-week retrospective review observed resident code status (CS) documentation through admission notes and direct EHMR orders before and after implementation of an ACP training module and CS best practice alert (BPA). In addition, residents were surveyed on perceived barriers to CS documentation. In 535 unique admissions (244 before BPA, 291 after BPA), residents exhibited a 14.4% increase (from 47.1% to 61.5%) in admission note CS documentation and an 18.2% increase (from 12.7% to 30.9%) in CS orders at time of discharge. The most common self-reported barrier to ACP documentation was forgetting to discuss, with first-, second-, and third-year residents admitting to feeling uncomfortable in orchestrating ACP conversations at rates of 58%, 6%, and 5%, respectively. Resident ACP documentation remains suboptimal in the high-risk cohort of hospitalized patients with advanced cancer. However, rates seem to be positively influenced by online modules and EHMR-based interventions. Additional efforts to improve the current practice and culture of ACP remain a crucial aspect in the quality and safety of our approach to patient care.

Young Adult Knowledge and Readiness to Engage in Advance Care Planning Behaviors.

Although advance care planning (ACP) has increased in importance and discussion, little is known about young adults' engagement in ACP. The purpose of this study was to identify associations among college-age students' characteristics, knowledge of ACP, and readiness to engage in ACP-related behaviors. One hundred forty-seven students at the University of Texas at Austin (aged 18-26 years) participated in an online survey regarding ACP knowledge, perceptions, and behavior engagement. Although 98% of the students had no advance directive, 85% rated themselves as "pro" ACP. Regarding ACP behaviors, at least 83% of participants had never considered completing a living will or health care proxy, but 33% and 45% of participants had talked with loved ones about being kept alive on machines or about quality of life, respectively. Greater knowledge of ACP correlated weakly with a favorable view of ACP (P = .002). Young adults should be made aware of their ability to dictate the care they want to receive in situations in which they are incapacitated, as well as advocate for their family members to engage in ACP. Discovering characteristics associated with readiness to engage in ACP can enable hospice and palliative care nurses to tailor discussions with young adults regarding ACP.

Exploring Advance Care Planning in Taiwanese Indigenous Cancer Survivors: Proposal for a Pilot Case-Control Study.

BackgroundResearch on Taiwanese indigenous cancer survivors’ end-of-life (EOL) planning is still in its infancy, despite recent government and societal efforts to promote quality EOL care. Previous national studies in Taiwan have characterized indigenous peoples as a socioeconomically disadvantaged minority group. Compared with their mainstream cohorts, these remote residents are vulnerable to multiple social welfare problems, receiving and accessing little in the way of health care in rural mountain areas. Although advance care planning (ACP) has been shown to help patients achieve better quality of dying, very little is known about indigenous intentions for such interventions. Relevant studies are scarce in Taiwan, and programs for cancer survivors have been based almost entirely on nonindigenous populations. Since there has been no research on Taiwanese indigenous people’s aims for ACP, there is a need to understand the impact of survivorship on ACP readiness among those who are currently living with, through, and beyond cancer.ObjectiveWe aim to identify differences in ACP intent and readiness among indigenous peoples with and without cancer diagnoses. We will identify the impact of factors such as tribal cultural beliefs and quality of life along with cancer exposure on the outcome of ACP readiness differences. In particular, we will examine the effects of ACP knowledge from previous ACP participation, EOL care experiences, and personal registry status of Do-Not-Resuscitate (DNR) in the national database. A secondary objective is to describe indigenous people’s intent to participate in public education related to EOL planning.MethodsA descriptive case-control study (N=200) is proposed where controls are matched to cases’ attributes of age, gender, and cancer diagnosis. This matching analysis allows assessment of cancer as an exposure while taking into account age and gender as confounding variables. We are currently in the process of training personnel and extracting clinical and administrative information from the health care system of collaborating facilities. This carefully designed study provides a unique opportunity because for the first time in Taiwan, cancer survivorship and ACP readiness for EOL planning will be examined among difficult-to-reach indigenous peoples.ResultsWe plan to complete this study in approximately 3 years.ConclusionsIn this study, we expect to survey palliative care usage in the remote indigenous group, understand factors that influence ACP readiness, and later foster culturally appropriate ACP public participation and policies in order to facilitate collaboration between cancer health care providers in various Taiwanese subcultures.

Associations between cancer patients' advance care and financial planning and surviving spouses' financial well-being.

6567 Background: The “financial toxicity” associated with cancer treatment, including high out-of-pocket expenses and lost earnings, may have lasting financial effects for surviving spouses. Although advance care planning (ACP) is used as a cancer quality metric, the value of financial planning is unknown. Methods: We examined associations between cancer patients’ written ACP and financial planning (will) and surviving spouses’ financial well-being using prospective, nationally representative data from the 2004-2014 waves of the Health and Retirement Study. We assessed change in household, non-housing (financial) wealth, including debt, among 962 surviving spouses of cancer decedents. Because wealth varies widely in the US, we fit multivariable quantile regression models at the 25th, 50th, and 75th percentiles to examine associations between cancer decedents’ ACP, financial planning, and wealth, adjusting for sociodemographic characteristics. Results: Among cancer decedents, 33% completed both ACP and a will, 27% only a will, 10% only ACP, and 30% neither. The median wealth of surviving spouses was $22,309 (25th percentile = $0, 75th percentile = $134,238). Among spouses of cancer decedents in the 25th percentile of wealth before death, completion of ACP and a will was associated with $5,348 (95% CI = $1,172-$9,523) more financial wealth after death compared with no planning. Use of ACP and a will was also associated with $46,851 (95% CI = $2,810-$90,891) more financial wealth at the 75th percentile. There were no differences in the wealth of surviving spouses after death between patients who completed only a will, only ACP, or no planning (Ps > .09). Conclusions: Completion of ACP and financial planning was associated with greater wealth among both affluent and non-affluent surviving spouses compared with no planning. Efforts to sensitively incorporate financial planning into cancer patients’ care have the potential to improve surviving family members’ financial well-being.

"Just Let Me Go": End-of-Life Planning Among Ojibwe Elders.

Although advance care planning (ACP) is designed to promote person-centered end-of-life care, the principles underpinning it are at odds with the values and norms of many American Indian/Alaska Native (AI/AN) communities, contributing to low rates of ACP among AI/AN elders. The purpose of this study was to explore the apparent tension between Western approaches to end-of-life care, including its emphasis on ACP, and the expectations and wishes of one community of AI elders, in hopes of informing more culturally appropriate approaches to planning for end-of-life care. About 20 tribal elders living on a Great Lakes reservation participated in semistructured, face-to-face interviews. Participants were recruited through convenience and snowball sampling techniques. The interviews were analyzed using an inductive thematic analysis approach. Despite seeing little need for ACP, the elders were generally open to discussing the care they would want at end of life. Many were readily able to describe their wishes for a peaceful death and had already developed funeral and burial or cremation plans. Although establishing one's individual legacy was not a salient end-of-life concern for the elders, several found meaning in describing their contributions to preserving their families, the community, and their cultural lifeways. A lack of formal ACP within AI/AN communities does not necessarily reflect a cultural aversion to discussing preferences for end of life. Efforts to increase ACP in tribal communities would likely be enhanced by acknowledgment of the spiritual and cultural significance of death and dying for many AI/AN individuals.

Knowledge About and Perceptions of Advance Care Planning and Communication of Chinese-American Older Adults.

Although advance care planning (ACP) is associated with better care at the end of life, better quality of death, and less psychological distress in survivors, ethnic disparities in ACP completion rates have been documented and may be attributable to lack of knowledge about ACP or differences in cultural values and preferences. Despite rapid increases in the size of the Asian-American population, little is known about ACP preferences of Chinese Americans. The purpose of this study is to explore the knowledge, attitudes, and preferences of older Chinese Americans toward ACP. Focus groups with Chinese older adults (n = 34) were conducted in Mandarin, Cantonese, and English, and transcripts were analyzed using a grounded theory approach. Identified themes included knowledge and experience with ACP and end-of-life care options, health as a factor in timing of ACP and communication, and communication of end-of-life care preferences. Knowledge of and experience with ACP and end-of-life decision-making varied according to focus group, although few participants had an advance directive. Findings suggest that Chinese older adults prefer to use indirect communication strategies, such as commenting on the circumstances of others rather than directly stating their wishes, and informal contexts, such as during a family dinner rather than formal meeting, to convey their care preferences to loved ones and may employ similar tactics when communicating with clinicians. This is particularly important given the recent decision by the Centers for Medicare and Medicaid Services to provide reimbursement to physicians for engaging in advance care planning conversations.

Economic (gross cost) analysis of systematically implementing a programme of advance care planning in three Irish nursing homes.

BackgroundAlthough advance care planning (ACP) and the use of advanced care directives (ACD) and end-of-life care plans are associated with a reduction in inappropriate hospitalisation, there is little evidence supporting the economic benefits of such programmes. We assessed the economic impact (gross savings) of the Let Me Decide (LMD) ACP programme in Ireland, specifically the impact on hospitalisations, bed days and location of resident deaths, before and after systematic implementation of the LMD-ACP combined with a palliative care education programme.MethodsThe LMD-ACP was introduced into three long-term care (LTC) facilities in Southern Ireland and outcomes were compared pre and post implementation. In addition, 90 staff were trained in a palliative care educational programme. Economic analysis including probabilistic sensitivity analysis was performed.ResultsThe uptake of an ACD or end-of-life care post-implementation rose from 25 to 76 %. Post implementation, there were statistically significant decreases in hospitalisation rates from baseline (hospitalisation incidents declined from 27.8 to 14.6 %, z = 3.96, p < 0.001; inpatient hospital days reduced from 0.54 to 0.36 %, z = 8.85, p < 0.001). The percentage of hospital deaths also decreased from 22.9 to 8.4 %, z = 3.22, p = 0.001. However, length of stay (LOS) increased marginally (7–9 days). Economic analysis suggested a cost-reduction related to reduced hospitalisations ranging between €10 and €17.8 million/annum and reduction in ambulance transfers, estimated at €0.4 million/annum if these results were extrapolated nationally. When unit costs and LOS estimates were varied in scenario analyses, the expected cost reduction owing to reduced hospitalisations, ranged from €17.7 to €42.4 million nationally.ConclusionsImplementation of the LMD-ACP (ACD/end-of-life care plans combined with palliative care education) programme resulted in reduced rates of hospitalisation. Despite an increase in LOS, likely reflecting more complex care needs of admitted residents, gross costs were reduced and scenario analysis projected large annual savings if these results were extrapolated to the wider LTC population in Ireland.

Understanding how cancer patients actualise, relinquish, and reject advance care planning: implications for practice

Although advance care planning (ACP) is recognised as integral to quality cancer care, it remains poorly integrated in many settings. Given cancer patients' unpredictable disease trajectories and equivocal treatment options, a disease-specific ACP model may be necessary. This study examines how Australian cancer patients consider ACP. Responses will inform the development of an Australian Cancer Centre's ACP programme. A constructivist research approach with grounded theory design was applied. Eighteen adults from lung and gastro-intestinal tumour streams participated. Participants first described their initial understanding of ACP, received ACP information, and finally completed a semi-structured interview assisted by the vignette technique. Qualitative inter-rater reliability was integrated. Participants initially had scant knowledge of ACP. On obtaining further information, their responses indicated that: For cancer patients, ACP is an individualised, dynamic, and shared process characterised by myriad variations in choices to actualise, relinquish, and/or reject its individual components (medical enduring power of attorney, statement of choices, refusal of treatment certificate, and advanced directive). Actualisation of each component involves considering, possibly conversing about, planning, and communicating a decision, usually iteratively. Reactions can change over time and are informed by values, memories, personalities, health perceptions, appreciation of prognoses, and trust or doubts in their substitute decision makers. Findings endorse the value of routinely, though sensitively, discussing ACP with cancer patients at various time points across their disease trajectory. Nonetheless, ACP may also be relinquished or rejected and ongoing offers for ACP in some patients may be offensive to their value system.