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.
Advance care planning is regarded as integral to better patient outcomes, yet little is known about the prevalence of advance directives (AD) in Australia.
To determine the prevalence of AD in the ...Australian population.
A national telephone survey about estate and advance planning. Sample was stratified by age (18-45 and >45 years) and quota sampling occurred based on population size in each state and territory.
Fourteen per cent of the Australian population has an AD. There is state variation with people from South Australia and Queensland more likely to have an AD than people from other states. Will making and particularly completion of a financial enduring power of attorney are associated with higher rates of AD completion. Standard demographic variables were of limited use in predicting whether a person would have an AD.
Despite efforts to improve uptake of advance care planning (including AD), barriers remain. One likely trigger for completing an AD and advance care planning is undertaking a wider future planning process (e.g. making a will or financial enduring power of attorney). This presents opportunities to increase advance care planning, but steps are needed to ensure that planning, which occurs outside the health system, is sufficiently informed and supported by health information so that it is useful in the clinical setting. Variations by state could also suggest that redesign of regulatory frameworks (such as a user-friendly and well-publicised form backed by statute) may help improve uptake of AD.
We aimed to explore multiple perspectives regarding barriers to and facilitators of advance care planning (ACP) among African Americans to identify similarities or differences that might have ...clinical implications.
Qualitative study with health disparities experts (n = 5), community members (n = 9), and seriously ill African American patients and caregivers (n = 11). Using template analysis, interviews were coded to identify intrapersonal, interpersonal, and systems-level themes in accordance with a social ecological framework.ResultParticipants identified seven primary factors that influence ACP for African Americans: religion and spirituality; trust and mistrust; family relationships and experiences; patient-clinician relationships; prognostic communication, care preferences, and preparation and control. These influences echo those described in the existing literature; however, our data highlight consistent differences by group in the degree to which these factors positively or negatively affect ACP. Expert participants reinforced common themes from the literature, for example, that African Americans were not interested in prognostic information because of mistrust and religion. Seriously ill patients were more likely to express trust in their clinicians and to desire prognostic communication; they and community members expressed a desire to prepare for and control the end of life. Religious belief did not appear to negate these desires.Significance of resultsThe literature on ACP in African Americans may not accurately reflect the experience of seriously ill African Americans. What are commonly understood as barriers to ACP may in fact not be. We propose reframing stereotypical barriers to ACP, such as religion and spirituality, or family, as cultural assets that should be engaged to enhance ACP. Although further research can inform best practices for engaging African American patients in ACP, findings suggest that respectful, rapport-building communication may facilitate ACP. Clinicians are encouraged to engage in early ACP using respectful and rapport building communication practices, including open-ended questions.
Objective To investigate the impact of advance care planning on end of life care in elderly patients.Design Prospective randomised controlled trial.Setting Single centre study in a university ...hospital in Melbourne, Australia.Participants 309 legally competent medical inpatients aged 80 or more and followed for six months or until death.Interventions Participants were randomised to receive usual care or usual care plus facilitated advance care planning. Advance care planning aimed to assist patients to reflect on their goals, values, and beliefs; to consider future medical treatment preferences; to appoint a surrogate; and to document their wishes.Main outcome measures The primary outcome was whether a patient’s end of life wishes were known and respected. Other outcomes included patient and family satisfaction with hospital stay and levels of stress, anxiety, and depression in relatives of patients who died.Results 154 of the 309 patients were randomised to advance care planning, 125 (81%) received advance care planning, and 108 (84%) expressed wishes or appointed a surrogate, or both. Of the 56 patients who died by six months, end of life wishes were much more likely to be known and followed in the intervention group (25/29, 86%) compared with the control group (8/27, 30%; P<0.001). In the intervention group, family members of patients who died had significantly less stress (intervention 5, control 15; P<0.001), anxiety (intervention 0, control 3; P=0.02), and depression (intervention 0, control 5; P=0.002) than those of the control patients. Patient and family satisfaction was higher in the intervention group.Conclusions Advance care planning improves end of life care and patient and family satisfaction and reduces stress, anxiety, and depression in surviving relatives.Trial registration Australian New Zealand clinical trials registry ACTRN12608000539336.
The COVID-19 pandemic and its sequelae have created scenarios of scarce medical resources, leading to the prospect that health care systems have faced or will face difficult decisions about triage, ...allocation, and reallocation. These decisions should be guided by ethical principles and values, should not be made before crisis standards have been declared by authorities, and, in most cases, will not be made by bedside clinicians. Do not attempt resuscitation and withholding and withdrawing decisions should be made according to standard determination of medical appropriateness and futility, but there are unique considerations during a pandemic. Transparent and clear communication is crucial, coupled with dedication to provide the best possible care to patients, including palliative care. As medical knowledge about COVID-19 grows, more will be known about prognostic factors that can guide these difficult decisions.
Few people with dementia have made advance plans for their health care. Advance care planning (ACP) is a process of discussion between an individual and their care providers that takes account of ...wishes and preferences for future care. We aimed to examine the facilitators and inhibitors to ACP in people with dementia. We also aimed to identify key themes in the literature and critically review the methodologies used.
We systematically searched the English language literature including PubMed, CINAHL, AMED, PsychINFO, EMBASE and BNI. We included empirical studies which reported the characteristics of the patient population, the type of advance care planning used and the study setting, and which involved people with dementia, family members or professional carers.
We identified 17 studies (11 quantitative methods, one qualitative and five mixed methods). We found one ACP intervention which changed outcomes for people with dementia. Key themes were identified: there is a point at which cognition decreases critically so that an advanced care plan can no longer be made; factors present in family carers and professionals can influence decision-making and the ACP process; ACPs are affected by preferences for life sustaining treatments; ACP in dementia may differ from other illness groups; and there is a need for education relating to ACP.
The current evidence base for ACP in dementia is limited. Since UK government policy recommends that all people should engage in ACP, more evidence is needed to understand the feasibility and acceptability of advanced care plans for people with dementia.
The concept of end-of-life planning, along with medical and legal issues, has been discussed and has evolved over several years. The 1990 Patient Self-Determination Act and individual states' ...Department of Health Advance Directive forms helped overcome past problems. Patients with terminal and chronic illness are now able to have their wishes recognized for their future care. Any healthy individual's decision during an advance care planning (ACP) discussion can be adversely affected by various factors; however, multiple barriers-religion, culture, education, and family dynamics-can influence the process. Healthcare professionals' reluctance to initiate the conversation may result from limited training during medical school and residency programs. These limitations hinder both the initiation and productiveness of an ACP conversation. We explored ACP issues to provide guidance to healthcare professionals on how best to address this planning process with a healthy adult.
Background:
Facilitating advance care planning with community-dwelling frail elders can be challenging. Notably, frail elders’ vulnerability to sudden deterioration leads to uncertainty in ...recognising the timing and focus of advance care planning conversations.
Aim:
To understand how advance care planning can be better implemented for community-dwelling frail elders and to develop a conceptual model to underpin intervention development.
Design:
A structured integrative review of relevant literature.
Data sources:
CINAHL, Embase, Ovid Medline, PsycINFO, Cochrane Library, and University of York Centre for Reviews and Dissemination. Further strategies included searching for policy and clinical documents, grey literature, and hand-searching reference lists. Literature was searched from 1990 until October 2018.
Results:
From 3043 potential papers, 42 were included. Twenty-nine were empirical, six expert commentaries, four service improvements, two guidelines and one theoretical. Analysis revealed nine themes: education and training, personal ability, models, recognising triggers, resources, conversations on death and dying, living day to day, personal beliefs and experience, and relationality.
Conclusion:
Implementing advance care planning for frail elders requires a system-wide approach, including providing relevant resources and clarifying responsibilities. Early engagement is key for frail elders, as is a shift from the current advance care planning model focussed on future ceilings of care to one that promotes living well now alongside planning for the future. The proposed conceptual model can be used as a starting point for professionals, organisations and policymakers looking to improve advance care planning for frail elders.
Heart failure (HF) has high mortality and healthcare utilisation. It has a complex and unpredictable trajectory, which is often interpreted as a barrier to guideline recommended early integration of ...palliative care (PC). In particular, lack of referral criteria and misconceptions around PC affect inpatient specialist PC referrals.
The main objective was to characterise the pattern and predictors of referral of HF patients to the specialist inpatient PC consultative service at our healthcare service.
A retrospective, single-centre cohort study was performed on consecutive patients admitted across the hospital with HF over a 12-month period (July 2019–June 2020). Mortality data were checked against state death registry data.
The 502 patients admitted for HF were elderly (mean age 78±14 years), had high dependency (54% Australian-modified Karnofsky Performance Status (AKPS) 50–70, 29% AKPS 10–40), and high mortality (53% within median 32 months at death registry data linkage). Seven per cent (7%) were referred to inpatient specialist PC. AKPS 10–40 (62% of those referred vs 26% not referred, p<0.01), reliance on carers (65% vs 36%, p<0.01), and New York Heart Association (NYHA) class III-IV symptoms (86% vs 42%, p<0.01) were associated with referral, but two or more admissions in the last 12 months for HF were not (16% vs 10%, p=0.21). Many PC domains, such as symptom burden, distress, and preferred care, were not adequately assessed.
Referral to inpatient specialist PC in hospitalised HF patients is low relative to the morbidity and mortality in these patients.
Background:
The Physician Orders for Life-Sustaining Treatment (POLST) Paradigm is an effective advance care planning tool. However, barriers to implementation persist. In the United States, POLST ...program development occurs at the state-level. Substantial differences between states has left POLST implementation largely unstandardized. No peer-reviewed studies to date have evaluated state-based POLST program development over time.
Objective:
To assess and learn from the successes and barriers in state-based POLST program development over time to improve the reach of POLST or similar programs across the United States.
Design:
An exploratory, prospective cohort study that utilized semistructured telephone interviews was conducted over a 3-year period (2012-2015). Stakeholder representatives from state POLST coalitions (n = 14) were repeatedly queried on time-relevant successes, barriers, and innovations during POLST program development with levels of legislative and medical barriers rated 1 to 10. Interviews were transcribed and analyzed using techniques grounded in qualitative theory.
Results:
All coalition representatives reported continuous POLST expansion with improved outreach and community partnerships. Significant barriers to expansion included difficulty in securing funding for training and infrastructure, lack of statewide metric systems to adequately assess expansion, lack of provider support, and legislative concerns. Medical barriers (mean standard deviation: 5.0 0.2) were rated higher than legislative (3.0 0.6; P < .001).
Conclusion:
POLST programs continue to grow, but not without barriers. Based on the experiences of developing coalitions, we were able to identify strategies to expand POLST programs and overcome barriers. Ultimately the “lessons learned” in this study can serve as a guide to improve the reach of POLST or similar programs.
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