Dataset Information

Prevalence of advance care planning practices among people with chronic diseases in hospital and community settings: a retrospective medical record audit.

ABSTRACT:

Background

Advance Care Planning (ACP) enables healthcare professionals to embrace the important process where patients think about their values in life and goals for health care, and discuss their future health care preferences with family members for a time when they are not able to make health care decisions. Despite the promotion of ACP last two decades, and well-known benefits of ACP and a written Advance Care Directive (ACD), they are still underutilised in Australia and across the world. Previous studies have provided some insights, however, an uptake of ACP and prevalence of ACDs in community settings is rarely reported.

Methods

The aim of this study was to determine the uptake of ACP and prevalence of ACDs among people with chronic diseases in hospital and community settings. A retrospective medical record audit of eligible patients looking for evidence of ACP was conducted in 16 research sites in eight hospital and eight community care settings. Participants included those who were admitted to one of the research sites, and who were aged 18 years and over with at least one of nine nominated chronic diseases. The primary outcome measures included the number of patients with evidence of ACP through the following practices: completion of an ACD, appointment of an Enduring Guardian (EG), or completion of a resuscitation plan.

Results

The overall prevalence of ACD was 2.8% (n = 28) out of 1006 audited records, and only 10 (1%) of them were legally binding. The number of EGs appointed was 39 (3.9%) across the sites. A total of 151 (15.4%) resuscitation plans were found across the eight hospital sites. 95% (n = 144) of the resuscitation plans indicated 'Not-for-resuscitation'.

Conclusions

The uptake of ACP is very low. Current medical recording system reveals the challenges in ACP lie in the process of storage, access and execution of the ACDs. Given that having an ACD or Enduring Guardian in place is only useful if the treating physician knows how and where to access the information, it has implications for policy, information system, and healthcare professionals' education.

Trial registration

The study was retrospectively registered with the Australian New Zealand Clinical Trials Registry (Trial ID: ACTRN12618001627246 ). The URL of the trial registry record http://www.anzctr.org.au/trial/MyTrial.aspx.

SUBMITTER: Jeong S

PROVIDER: S-EPMC8022421 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundA growing body of international literature concurs that comprehensive and complex Advance Care Planning (ACP) programs involving specially qualified or trained healthcare professionals are effective in increasing documentation of Advance Care Directives (ACDs), improving compliance with patients' wishes and satisfaction with care, and quality of care for patients and their families. Economic analyses of ACDs and ACP have been more sporadic and inconclusive. This study aimed to contribute to the evidence on resource use associated with implementation of ACP and to inform key decision-makers of the resource implications through the conduct of a cost-consequence analysis of the Normalised Advance Care Planning (NACP) trial.MethodsThe outcomes for the economic evaluation included the number of completed "legally binding" ACDs and the number of completed Conversation Cards (CC). The cost analysis assessed the incremental difference in resource utilisation between Usual Practice and the Intervention. Costs have been categorised into: 1) Contract staff costs; 2) Costs associated with the development of the intervention; 3) Implementation costs; 4) Intervention (delivery) costs; and 5) Research costs.ResultsThe cost incurred for each completed ACD was A$13,980 in the hospital setting and A$1248 in the community setting. The cost incurred for each completed Conversation Card was A$7528 in the hospital setting and A$910 in the community setting.ConclusionsThe cost-consequence analysis does not support generalisation of the specified intervention within the hospital setting. The trial realised an estimated incremental cost per completed ACD of $1248, within the community setting. This estimate provides an additional benchmark against which decision-makers can assess the value of either 1) this approach towards the realisation of additional completed ACDs; and/or 2) the value of ACP and ACDs more broadly, when this estimate is positioned within the potential health outcomes and downstream health service implications that may arise for people with or without a completed ACD.Trial registrationThe study was retrospectively registered with the Australian New Zealand Clinical Trials Registry (Trial ID: ACTRN12618001627246 ). The URL of the trial registry record.

Project description:BackgroundAdvance Care Planning (ACP) has emerged to improve end-of-life processes and experiences. However, the available evidence presents the gloomy picture of increasing number of older people living with chronic diseases and the mismatch between their preferences for and the actual place of death. The study aimed to investigate the efficacy of normalisation of an Advance Care Planning (NACP) service delivered by specially trained Registered Nurses (RNs) in hospital and community settings.MethodsA quasi-experimental study was conducted involving 16 sites (eight hospital and eight community sites) in Australia. Patients who were aged ≥18 years, who had at least one of nine chronic conditions, and who did not have an Advance Care Directive (ACD) were offered the NACP service. ACP was normalised as part of routine service on admission. The intervention, NACP, was a series of facilitated conversations about the components of ACP. The primary outcomes which included the completion of ACDs, and/or appointment of an Enduring Guardian (EG), were assessed in both intervention and control sites at pre and post intervention stages. Numbers of patients who completed an ACD or appointed an EG were described by count (percentage). ACD completion was compared between intervention and control sites using a logistic mixed effects regression model. The model includes fixed effects for treatment group, period, and their interaction, as well as random site level intercepts. Secondary model included potentially confounding variables as covariates, including age, sex and chronic diseases.ResultsThe prevalence of legally binding ACDs in intervention sites has increased from five to 85 (from 0.85% in pre to 17.6% in post), whereas it has slightly decreased from five to 2 (from 1.2% in pre and to 0.49% in post) in control sites (the difference in these changes being statistically significant p < 0.001). ACD completion rate was 3.6% (n = 4) in LHD1 and 1.2% (n = 3) in LHD2 in hospital whereas it was 53% (n = 26) in LHD1 and 80% (n = 52) in LHD2 in community.ConclusionsThe study demonstrated that NACP service delivered by ACP RNs was effective in increasing completion of ACDs (interaction odds ratio = 50) and was more effective in community than hospital settings. Involvement of various healthcare professionals are warranted to ensure concordance of care.Trial registrationThe study was retrospectively registered with the Australian New Zealand Clinical Trials Registry (Trial ID: ACTRN12618001627246 ) on 03/10/2018. The URL of the trial registry record http://www.anzctr.org.au/trial/MyTrial.aspx.

Project description:ImportanceAdvance care planning (ACP) can promote patient-centered end-of-life (EOL) care and is intended to ensure that medical treatments are aligned with patient's values. Sexual and gender minority (SGM) people face greater discrimination in health care settings compared with heterosexual, cisgender people, but it is unknown whether such discrimination occurs in ACP and how it might affect the ACP experiences of SGM people.ObjectivesTo increase understanding of barriers and facilitators of ACP facing SGM individuals.Design, setting, and participantsThis mixed-methods national study of ACP included a telephone survey of self-identified SGM and non-SGM participants in a nationally representative sample drawn from a larger omnibus national panel by SSRS. Qualitative interviews were conducted with a subset of survey participants who identified as SGM. Data were collected from October 2020 to March 2021.ExposuresSelf-identified SGM.Main outcomes and measuresThe survey included 4 items from the validated ACP Engagement Survey, adapted to capture experiences of discrimination. Interviews asked about participants' experiences with ACP, including the appointment of medical decision-makers, sharing preferences, and experiences within the health care system more broadly.ResultsA total of 603 adults participated in the survey, with 201 SGM individuals (mean [SD] age, 45.7 [18.7] years; 101 [50.2%] female; 22 [10.9%] Black, 37 [18.4%] Hispanic, and 140 [69.7%] White individuals) and 402 non-SGM individuals (mean [SD] age, 53.7 [19.2] years; 199 [49.5%] female; 35 [8.7%] Black, 41 [10.2%] Hispanic, and 324 [80.6%] White individuals). Regarding reasons for not completing ACP, SGM respondents, compared with non-SGM respondents, were more likely to say "I don't see the need" (72 [73.5%] vs 131 [57.2%], P = .006) and "I feel discriminated against by others" (12 [12.2%] vs 6 [2.6%], P < .001). Of 25 completed interviews among SGM participants, 3 main themes were identified: how fear and experiences of discrimination affect selection of clinicians and whether to disclose SGM identity; concerns about whether EOL preferences and medical decision-makers would be supported; and a preference to discuss EOL decisions and values outside of clinical settings.Conclusions and relevanceThis study found that fear of disclosing sexual orientation or gender identity information and discrimination are important barriers to ACP for SGM in clinical settings, but discussions of preferences and values still occur between many SGM people and medical decision-makers. More SGM-specific patient-centered care might better support these discussions within the health care system. Furthermore, health systems can facilitate improved engagement by supporting clinician sensitivity training, including guidance on documentation and requirements.

Project description:BackgroundThere is increasing awareness of the need for an integrated palliative care approach in chronic progressive neurological diseases. Advance care planning (ACP) is an integral part of this approach. As a systematically organized and ongoing communication process about patients' values, goals and preferences regarding medical care during serious and chronic illness, ACP aims to involve patients in decision-making before they become cognitively and communicatively incapable. However, it remains underutilized in daily neurological practice except for speciality clinics such as ALS centers. Our aim was to study ACP in the tertiary ALS center Amsterdam and to investigate patients' reflections on it. Subsequently we used this knowledge to formulate recommendations for integration of ACP in the care of patients with other chronic progressive neurological diseases.MethodsNon-participating observations of all appointments of patients with amyotrophic lateral sclerosis (ALS) or progressive muscular atrophy (PMA) with the treating physician, in various stages of disease, during 6 consecutive months, followed by single in-depth interviews, and an inductive analysis.ResultsTwenty-eight Dutch patients participated, varying in age, gender, disease onset and severity of physical decline. ACP started directly when the diagnosis was given, by means of a general outlook on the future with progressive disability and immediate introduction to a customized multidisciplinary team. During follow-up ACP was realized by regular appointments in which monitoring of the patient's status and clear communication strategies formed the basis of tailor-made discussions on treatment options. Patients accepted this policy as careful professional guidance.ConclusionsACP is a professional communication process throughout the whole course of progressive disease. It is feasible to integrate ACP into follow-up of patients with ALS and PMA from diagnosis onwards. Supported by recent literature, we argue that such a well-structured approach would also enhance the quality of care and life of patients with other chronic progressive neurological diseases.

Project description:BackgroundAdvance care planning allows patients to articulate their future care preferences should they no longer be able to make decisions on their own. Early advance care planning in outpatient settings provides benefits such as less aggressive care and fewer hospitalizations, yet it is underutilized due to barriers such as provider time constraints and communication complexity. Novel methods, such as patient portals, provide a unique opportunity to conduct advance care planning previsit planning for outpatient care. This follow-up to our pilot study aimed to conduct pragmatic testing of a novel electronic health record-tethered framework and its effects on advance care planning delivery in a real-world primary care setting.ObjectiveOur intervention tested a previsit advance care planning workflow centered around a framework sent via secure electronic health record-linked patient portal in a real-world clinical setting. The primary objective of this study was to determine its impact on frequency and quality of advance care planning documentation.MethodsWe conducted a pragmatic trial including 2 sister clinical sites, one site implementing the intervention and the other continuing standard care. A total of 419 patients aged between 50 and 93 years with active portal accounts received intervention (n=200) or standard care (n=219). Chart review analyzed the presence of advance care planning and its quality and was graded with previously established scoring criteria based on advance care planning best practice guidelines from multiple nations.ResultsA total of 19.5% (39/200) of patients who received previsit planning responded to the framework. We found that the intervention site had statistically significant improvement in new advance care planning documentation rates (P<.01) and quality (P<.01) among all eligible patients. Advance care planning documentation rates increased by 105% (19/39 to 39/39) and quality improved among all patients who engaged in the previsit planning framework (n=39). Among eligible patients aged between 50 and 60 years at the intervention site, advance care planning documentation rates increased by 37% (27/96 to 37/96). Advance care planning documentation rates increased 34% among high users (27/67 to 36/67).ConclusionsAdvance care planning previsit planning using a secure electronic health record-supported patient portal framework yielded improvement in the presence of advance care planning documentation, with highest improvement in active patient portal users and patients aged between 50 and 60 years. Targeted previsit patient portal advance care planning delivery in these populations can potentially improve the quality of care in these populations.

Project description:BackgroundAdvance care planning (ACP) is a process involving conversations about values and preferences regarding future care at the end-of-life. ACP has led to positive outcomes, both in relation to quality of life and with increased use of palliative care, less life-sustaining treatment and fewer hospital admissions. Sweden has yet to embrace the practice systematically, but scattered initiatives exist.AimTo study implementation of a routine for ACP in NH settings in Sweden by exploring healthcare professionals' experiences of engaging in ACP following this implementation.MethodsThe study followed a qualitative inductive design with convenience and snowball sampling. Semi-structured group and individual interviews with registered healthcare professionals were analysed using qualitative content analysis.FindingsOrganisational support for sustainable ACP implementation was found to be essential. This included sufficient training, facilitation, collaboration and uniform work routines across providers and professionals. Engaging in ACP conversations following the implemented routine was found to be a process of preparing, being, talking, deciding and sharing.ConclusionsSuccessful implementation of ACP in NHs requires a carefully planned implementation strategy. ACP in NHs tend to be medically focused at the expense of residents' psychosocial care-planning needs. Widespread uptake of ACP in Sweden could be useful in the national effort to adopt more person-centred care in Swedish healthcare.KEY POINTS While advance care planning has been implemented in many other countries, Sweden lacks a national strategy on advance care planning and Swedish healthcare settings have yet to systematically implement this practice. • This study is the first to report on professionals' experiences of engaging in sustainable advance care planning, following top-down implementation of the practice in one Swedish region. • Successful implementation of advance care planning in nursing homes requires a system-level approach, and shortcomings of the implementation process are highlighted.