Formal Advance Care Planning Research Articles

Impact of a Formal Advance Care Planning Program on End-of-Life Care for Patients With Heart Failure: Results From a Randomized Controlled Trial

There is no evidence on effectiveness of advance care planning (ACP) among patients with heart failure (HF). We examined the effect of an ACP program in facilitating end of life (EOL) care consistent with the preferences of patients with HF (primary aim), and on their decisional conflict, discussion with surrogates, illness understanding, anxiety, depression, and quality of life (secondary aims). We randomized 282 patients with HF to receive ACP (n=93) or usual care (control arm, n=189). Primary outcomes were assessed among deceased (n=89) and secondary outcomes from baseline and 6 follow-ups conducted every 4 months. Deceased patients in the ACP arm were no more likely than those in control arm to have wishes followed for EOL treatments (ACP: 35%, Control: 44%; P= .47), or place of death (ACP: 52%, Control: 51%; P = .1.00). A higher proportion in the ACP arm had wishes followed for cardiopulmonary resuscitation (ACP: 83%, Control: 62%; P = .12). At first follow-up, patients with ACP had lower decisional conflict (β = -10.8, P< .01) and were more likely to discuss preferences with surrogates (β = 1.3, P = .04). ACP did not influence other outcomes. This trial did not confirm that our ACP program was effective in facilitating EOL care consistent with patient preferences. The program led to short-term improvements in the decision-making.

My Life, My Way: A Quality Improvement Program to Increase Advance Care Planning in a Racially and Ethnically Diverse Patient Population

BackgroundA multilevel quality improvement program was implemented at an urban community hospital, serving a racially and ethnically pluralistic patient population, to increase participation in advance care planning (ACP). MeasuresNumber of eligible patients who completed an ACP form. InterventionProjects were implemented over the course of two years that targeted patients, health care providers, the organization, and the community. OutcomesThe intervention resulted in increased completion of four unique ACP forms. Completion of the Living Will increased by 60%, Health Care Proxy increased by 9%, Medical Orders for Life-Sustaining Treatment increased by 5%, and Do-Not-Resuscitate/Do-Not-Intubate orders increased by 3%. ConclusionMultilevel interventions can increase ACP participation in a racially and ethnically pluralistic patient population.

Family Caregiving Situations and Engagement in Advance Care Planning.

Background: Family members are involved in the decision-making process of advance care planning (ACP). However, there is limited evidence about how family caregiving situations affect engagement in ACP. Objective: To understand how agreement on caregiving situations and caregiving burdens are predictive of engagement in ACP of older adults. Design: Cross-sectional secondary data. Setting/Subjects: Subjects were nationally representative of adults ages 65 or older from the National Health and Aging Trends Study. Measurements: Informal engagement in ACP was measured based on whether respondents had discussed an end-of-life care option. The study involving formal engagement in ACP asked whether respondents have completed durable powers of attorney or living wills. Family members' agreement on caregiving situations and caregiving burdens were used to measure caregiving situations. We also include sociodemographic and health-related variables. Results: Higher levels of disagreement between family members concerning care for older adults were associated with engagement in formal ACP (odds ratio [OR] = 0.5); there were higher levels of caregiver burdens with engagement in formal ACP (OR = 1.1). The factors of being age 85 or older (OR = 2.2) and having fallen down in the previous year (OR = 1.9) were also related to formal engagement in ACP. Being white and having high school diplomas were associated with both informal and formal engagement in ACP. Conclusions: Caregiving situations may affect care recipients' decision-making regarding informal and formal engagement in ACP in different ways, suggesting different intervention strategies for different types of ACP.

Prevalence and correlates of advance care directives among older Australians accessing health and residential aged care services: multicentre audit study

ObjectivesIt is important that the outcomes of advance care planning (ACP) conversations are documented and available at the point of care. Advance care directives (ACDs) are a subset of ACP...

Advance care planning documentation strategies; goals-of-care as an alternative to not-for-resuscitation in medical and oncology patients. A pre-post controlled study on quantifiable outcomes.

Health services in Tasmania, Victoria and now Western Australia are changing to goals-of-care (GOC) advance care planning (ACP) documentation strategies. To compare the clinical impact of two different health department-sanctioned ACP documentation strategies. A non-blinded, pre-post, controlled study over two corresponding 6-month periods in 2016 and 2017 comparing the current discretional not-for-resuscitation (NFR) with a new, inclusive GOC strategy in two medical/oncology wards at a large private hospital. Main outcomes were the uptake of ACP forms per hospitalisation and the timing between hospital admission, ACP form completion and in-patient death. Secondary outcomes included utilisation of the rapid response team (RRT), palliative and critical care services. In total, 650 NFR and 653 GOC patients underwent 1885 admissions (mean Charlson Comorbidity Index = 3.7). GOC patients had a higher uptake of ACP documentation (346 vs 150 ACP forms per 1000 admissions, P < 0.0001) and a higher proportion of ACP forms completed within the first 48 h of admission (58 vs 39%, P = 0.0002) but a higher incidence of altering the initial ACP level of care (P = 0.003). All other measures, including ACP documentation within 48 h of death (P = 0.50), activation of RRT (P = 0.73) and admission to critical (P = 0.62) or palliative (P = 0.81) care services, remained similar. GOC documentation was often incomplete, with most sub-sections left blank between 74 and 87% of occasions. Despite an increased uptake of the GOC form, overall use remained low, written completion was poor, and most quantitative outcomes remained statistically unchanged. Further research is required before a wider GOC implementation can be supported in Australia's healthcare systems.

Does ACP promote increased hospice utilization? A practice experience among three diverse OCM populations in Texas.

6 Background: A community oncology practice participating in the Oncology Care Model (OCM) has interest in promoting hospice utilization through delivery of proactive advance care planning (ACP) services. This review of data seeks to understand geographic and ethnic variations in Medicare population utilization of ACP program services and timely transition to hospice care at the end of life. The study population included over 43% having stage IV disease at diagnosis; 19% had lung cancer. Methods: Three sites in Texas were selected for review. Site 1: central Texas urban community with primary non-Hispanic population. Site 2: south Texas urban community with primary Hispanic population. Site 3: central/east Texas rural community with primary non-Hispanic population. A 15-month retrospective review of ACP and hospice data was performed for deceased patients having OCM enrollment between January 1, 2017 and March 31, 2018. A total of 224 chart reviews were performed. Results: Little difference in hospice utilization is noted among the various populations, each demonstrating a hospice transition of care for more than 60% of OCM participants reviewed. All sites, however, showed median days in hospice care of five days or less. Formal ACP education was provided for 22% to 27% of urban study populations, while occurring for only 12% of patients seen in the rural setting. Written Advance Directives are captured in the electronic medical record more frequently for non-Hispanic patients when compared to those of Hispanic ethnicity. Formal values and goals for care were not routinely and formally assessed at these study sites, even though a validated tool for assisting with this important component of end-of-life preparedness is available. Conclusions: This study identified notable gaps in service provision to assist patients with end-of-life decision making. Increased efforts to provide ACP counseling services are needed to assist patients and families with ability to consider the additional level of care that is provided when electing hospice care. Overall, work is needed to improve hospice length of stay in all sites reviewed, but particularly among the Hispanic population of south Texas.

A randomised controlled trial of an advance care planning intervention for patients with incurable cancer

BackgroundWe modified and evaluated an advance care planning (ACP) intervention, which had been shown to improve compliance with patient’s end of life (EoL) wishes, in a different patient population.MethodsPatients with incurable cancer, and a Family Member (FM), were randomised one-to-one to usual care or usual care plus an ACP intervention, between April 2014 and January 2017. Oncologists and participants were non-blinded. ACP was based on the Respecting Patient Choices model, with an offer to provide individualised ranges for typical, best-case and worst-case scenarios for survival time. Seven facilitators (two oncology nurses, two nurses and three allied health professionals) delivered the intervention within 2 weeks of study enrolment. The primary outcome measure, assessed by interviewing the FM 3 months after patient death, was the FM perception that the patient’s wishes were discussed, and met.ResultsSix hundred and sixty-five patients from seven Australian metropolitan oncology centres were referred for consideration by their oncologists, 444 (67%) met the study inclusion criteria and were approached by a study researcher. Two hundred and eight patients (47%) and their FM entered the trial as dyads. Fifty-three (46%) dyads in the ACP group and 63 (54%) dyads in the usual-care group had complete primary outcome data (p = 0.16). Seventy-nine patients and 53 FMs attended an ACP discussion. Mean length of discussion was 57 min. FMs from 23 (43%) dyads allocated to ACP and 21 (33%) dyads allocated usual care reported the patient’s EoL wishes were discussed and met (difference 10%, 95% CI: −2 to 8, p = 0.27). There were no differences in EoL care received, patient satisfaction with care; FM satisfaction with care or with death; or FM well being. Rates of palliative care referral were high in both groups (97% vs 96%).ConclusionsA formal ACP intervention did not increase the likelihood that EoL care was consistent with patients’ preferences.

What We Do: Key Activities of an Outpatient Palliative Care Team at an Academic Cancer Center.

Outpatient palliative care (PC) has been shown to positively impact quality of life and decrease healthcare utilization, but there are limited data describing what activities render these benefits. Describe the topics addressed by an outpatient PC team during scheduled visits. Longitudinal cohort study. The Symptom Management Service, an ambulatory PC program at an academic comprehensive cancer center. Between March 23, 2015 and June 14, 2016, outpatient PC providers completed a checklist after each clinic visit, documenting topics covered during the visit. During the study period, 1243 visits were conducted for 577 unique patients. Symptom management was the topic most commonly addressed during initial visits (in 92% of visits), followed by an introduction of PC (69%), support for family caregivers (47%), and communication with other clinicians (38%). Providers also supported patients to understand their prognosis (28%), treatment options (36%), and to make care decisions (22%). Formal advance care planning activities occurred infrequently, however, including designation of a Durable Power of Attorney for Healthcare (26%), completion of an advance directive or Provider Orders for Life-Sustaining Treatment form (10%), and discussing hospice (8%). Follow-up visits were dominated by symptom management (93%) and caregiver support (27%). Symptom management, support for family and caregivers, and care coordination are the most common activities that occurred during scheduled outpatient PC visits. These findings can guide developing PC practices, as well as clinicians who provide primary PC.

Social and structural conditions for the avoidance of advance care planning in neuro-oncology: a qualitative study

BackgroundPrimary brain tumours newly affect >260 000 people each year worldwide. In the UK, every year >10 000 people are diagnosed with a brain tumour while >5000 die annually from...

Who, what, where, when, and how? Advance care planning documentation practices and accessibility in the electronic health record.

2 Background: Documenting patients’ advance care planning (ACP) wishes is essential to providing value aligned care, as is having this documentation readily accessible. Early ACP is increasingly being recognized as integral to oncologic care, however, little is known about current documentation practices. In this cross-sectional study, we describe ACP documentation practices and accessibility of documented ACP discussions in the electronic health record (EHR). Methods: Participants were recruited from outpatient clinics at the San Francisco VA, were ≥60 years old, with ≥2 chronic/serious conditions and ≥2 primary care visits in the past year. ACP documentation was abstracted from the EHR in 2013-2015 and included any prior legal forms/orders and ACP discussions documented within the prior five years. Frequency and type of ACP documentation was calculated using percentages and means. For discussions, author discipline and location of documentation was determined. Discussions were deemed “accessible” if documented in a designated ACP posting location or “not easily accessible” if recorded as free text in progress notes. Results: The mean age of 414 participants was 71 years (SD ± 8), 9% were women, 43% were non-white, and 51% had documented ACP including 149 (36%) with ACP forms and 138 (33%) with ACP discussions. Seventy-five (54%) discussions were documented by social workers and 49 (36%) by primary care providers. However, 76 (55%) discussions were not easily accessible. For 27 (18%) participants with advance directives, subsequent discussions documented a change in treatment preferences. Nineteen (70%) discussions reporting a change in wishes were not easily accessible. Conclusions: Half of chronically ill, older patients had documented ACP wishes, including a third with documented ACP discussions. Most discussions were documented by social workers and were not easily accessible, although discussions often represented changes from prior advance directives. Clinician education and EHR changes to ensure documented discussions are accessible are important patient-safety and quality improvement targets to ensure patients’ wishes are honored.

Discussion and documentation of future care: a before-and-after study examining the impact of an alternative approach to recording treatment decisions on advance care planning in an acute hospital

ObjectiveTo determine whether discussion and documentation of decisions about future care was improved following the introduction of a new approach to recording treatment decisions: the Universal Form of Treatment Options...

Increasing Advance Care Planning Completion at an Academic Internal Medicine Outpatient Clinic

BackgroundWe sought to increase advance care planning (ACP) completion at an academic internal medicine clinic through an electronic health record. MeasuresNumber of eligible patients who completed a form of ACP. InterventionMultidisciplinary team approach with engagement from providers and clinic staff; implemented informational letter and appropriate forms to eligible patients before appointment; informational video and provider reminders at time of appointment. OutcomesOf 480 eligible patients, 327 (68%) completed one or more forms of ACP or had a discussion with their provider. Discussed but not completed was highest (53%). The three types of ACP completed were 1) a state-formatted advance directive form (47%), 2) Medical Orders for Life-Sustaining Treatment (45%), and 3) power of attorney designation (8%). ConclusionsImplementation of a multi-disciplinary approach can facilitate ACP. However, challenges still arise because in more than half of the cases, advance care efforts led only to a discussion.

A Group Visit Initiative Improves Advance Care Planning Documentation among Older Adults in Primary Care.

Group visits for advance care planning (ACP) may help patients document preferences for decision makers and future care. We assessed the impact of a primary care-based ACP group visit (ACP-GV) intervention on older adults' ACP documentation and why patients participated. Older adults (>65 years) in primary care participated in a 2-session ACP-GV intervention that promotes group dynamics, peer-based learning, and goal setting. Charts were reviewed at baseline, 3 months, and 12 months for documentation of decision makers and ACP forms. We described patients' reasons for participating through analysis of transcripts. 118 patients (mean age 76 years; 62% female and 82% white) participated in 16 ACP-GV cohorts. From baseline to 3-month follow-up, documentation of decision maker preferences increased from 39% to 81%, and was 89% at 12-month follow-up. Patients with completed ACP forms increased from 20% to 57% at 3 months, and was 67% at 12 months. Reasons for participating included recognizing the importance of ACP, curiosity, participation recommended by primary care provider, desire to talk with family/friends, and desire to complete advance directives. This ACP-GV intervention increased ACP documentation among patients with diverse reasons for participating. This is a patient-centered approach to ACP in primary care.

Does Religiosity Account for Lower Rates of Advance Care Planning by Older African Americans?

Advance care planning (ACP) is associated with higher quality care at the end of life and increased odds of receiving hospice care and of dying at home. Older African Americans are less likely to complete advance directives (ADs) or discuss life-sustaining treatment preferences. This study examined whether religiosity accounts for race disparities. Analyses were conducted with Health and Retirement Study data (1,180 African Americans, 5,681 Whites). Two forms of ACP were regressed on race, five measures of religiosity, and demographic, health, and health care covariates. Whites were twice as likely to engage in ACP. Including religiosity predictors did not close these gaps. Frequency of service attendance was positively associated with AD completion for both White and African American participants. Relationships between religious affiliation and advance care discussion varied by race. For White participants only, more frequent prayer was associated with higher odds of advance care discussion. Although religiosity is often proposed as a reason for low rates of ACP among African Americans, religiosity measures did not explain race differences. Distinct aspects of religiosity were associated with ACP both negatively and positively, and these relationships varied by type of ACP and by race.

Advance care planning in patients with incurable cancer: study protocol for a randomised controlled trial

IntroductionThere is limited evidence documenting the effectiveness of Advance Care Planning (ACP) in cancer care. The present randomised trial is designed to evaluate whether the administration of formal ACP improves...

Chronic Illness with Complexity: Association With Self-Perceived Burden and Advance Care Planning.

The present study examines how different chronic illnesses and mental illness comorbidity (chronic illness with complexity [CIC]) associate with components of advance care planning (ACP). We also explore the role self-perceived burden plays in the relationship between illness and ACP. Data were gathered from a cross-sectional survey of 305 elderly participants from the New Jersey End-of-Life study. Participants with diabetes and those with cardiovascular disease (CVD) are less likely, while participants with CIC are more likely, to plan for the end-of-life. Participants with diabetes are less likely to make formal plans, whereas those with CVD are less likely to hold informal discussions. CIC is associated with increased odds of having an advance directive, but no other form of ACP. Self-perceived burden did not appear to be the gateway by which illness groups differentially engaged in ACP. Future research should investigate what aspects of illnesses drive ACP.

Using a values assessment as a bridge to advance care planning: Results of 1286 patient reports.

12 Background: Recent studies have shown that formal Palliative Care (PC) improves care at the end of life for cancer patients. The role of communication in PC is not defined. Other studies have shown that communication alone can be associated with better end of life outcomes. The US Oncology Network developed and tested a Values Assessment (VA) instrument for routinely broaching difficult topics to facilitate more formal advance care planning (ACP). The results of the first 28 months of the program on over 1200 patients are reported here. Methods: The VA consists of 10 questions of the format “How valuable is it to me to….”, for example “know that I am not a burden to my family, friends or helpers?” Responses were on a 4 point scale from unsure to very valuable. The VA was completed either in person in the clinic or telephonically. VA participation by n = 1286 metastatic cancer patients treated at participating practices from 4/1/2013-7/31/2015 were extracted from the EHR and confirmed by chart review, as were demographic (age, gender, ethnicity), clinical (diagnosis and stage), chemotherapy treatment and outcomes (hospice enrollment and place of death). Demographics and outcomes were compared using the Chi-Squared or Fisher’s Exact Test, or Wilcoxon Rank Sums test for continuous variables. Results: 1268 patients completed the VA. 56.7% were 65 or over. 57.8% went on to complete Advance Directives (AD). 52% had colon or lung cancer. There were 438 deaths of which 431 had a date of last chemotherapy recorded. Of these 431 patients, 78% died at home or inpatient hospice, 14.6% in the hospital. Hospice enrollment with AD was 76.1%, without 60.9%. (p = .008) Median LOS in hospice was 21 days vs. 12.5 (p = .025). Chemotherapy in the last 14 days of life was 7.05% with AD, 13.4% without. The VA was well accepted by patients. Conclusions: A VA as a routine part of practice is feasible and scalable. It can be delivered successfully either face to face or telephonically. It facilitates ACP discussion leading to AD. The results suggest VA and ACP lead to less aggressive care at the end of life.

Availability of Advance Care Planning Documentation for Older Emergency Department Patients: A Cross-Sectional Study.

Increasing advance care planning (ACP) among older adults is a national priority. Documentation of ACP in the electronic health record (EHR) is particularly important during emergency care. We sought to characterize completion and availability of ACP among a subset of older patients at an academic emergency department (ED) with an integrated EHR. In this cross-sectional study, patients were eligible if aged ≥80 years or aged 65-79 with ≥1 indicator of high risk for short-term mortality. Patient-reported completion of ACP and availability of ACP documentation in the EHR were assessed. Among study patients (n = 104), 59% reported completing some form of ACP: living will 52%, heathcare power of attorney 54%, do not resuscitate 38%, and medical orders for scope of treatment or physician orders for life-sustaining treatment 6%. Whites were more likely to report having some form of ACP than minorities (66% vs. 37%, p < 0.01), as were patients aged ≥80 years than those aged 65-79 (79% vs. 44%, p < 0.01). Only 13% of all patients had either a current code status or any other current ACP documentation in the EHR. Among patients whose primary care provider uses the same EHR system as the study ED, only 19% had a current code status or any other ACP documentation in the EHR. In a sample of older ED patients likely to benefit from ACP, few patients had documented end-of-life care preferences in the EHR.

Personal advance care planning uptake amongst Australian and New Zealand palliative care medical and nursing professionals

Background: Palliative care (PC) medical and nursing professionals are potentially the most death literate group in the community yet little is known about their personal uptake of advance care planning (ACP) or written advance care directives (ACDs).Aim: To describe Australian and New Zealand PC medical and nursing professionals’ participation in personal ACP activities.Method: Between 12 May 2014 and 6 June 2014 an anonymous cross sectional online survey about personal ACP activities was distributed to Australian and New Zealand PC medical and nursing professionals.Results: The survey link was emailed to 946 medical and nursing PC health professionals with 329 (35%) recipients commencing the survey. Ninety-one percent of participating Australian and New Zealand PC medical and nursing health professionals have engaged in some form of ACP; 21% have a written ACD. Over 80% of those without a current ACD have engaged in an ACP conversation with family or significant others. Thirty percent of doctors did not feel an ACD was relevant for them, 29% considered them a low priority, 27% relied on conversations and 14% felt ACDs were poorly designed or ineffective. These proportions were 15%, 44%, 36%, and 2%, respectively for nurses.Conclusion: This study supports the notion that familiarity with ACP increases overall participation however, it does not support the popular view that familiarity with ACDs ensures uptake. The favoured mode of ACP amongst this group of health professionals was a conversation outlining values and preferences with family or significant others.

Advance care planning and end-of-life care in a network of rural Western Australian hospitals.

To provide a current perspective on end-of-life (EOL) care in regional Western Australia, with a particular focus on the final admission prior to death and the presence of documented advance care planning (ACP). Retrospective medical notes audit. One regional hospital (including colocated hospice) and four small rural hospitals in the Great Southern region of Western Australia. Ninety recently deceased patients, who died in hospitals in the region. Fifty consecutive patients from the regional hospital and 10 consecutive patients from each of the four rural hospitals were included in the audit. A retrospective medical notes audit was undertaken. A 94-item audit tool assessed patient demographics, primary diagnosis, family support, status on admission and presence of documented ACP. Detailed items described the clinical care delivered during the final admission, including communication with family, referral to palliative care, transfers, medical investigations, medical treatments and use of EOL care pathways. Fifty-two per cent were women; median age was 82 years old. Forty per cent died of malignancy. Median length of stay was 7 days. Thirty-nine per cent had formal or informal ACP documented. Rural hospitals performed comparably with the regional hospital on all measures. This study provides benchmarking information that can assist other rural hospitals and suggests ongoing work on optimal methods of measuring quality in EOL care.