Palliative Care and Advanced Cardiovascular Disease in Adults: Not Just End-of-Life Care: A Scientific Statement From the American Heart Association

Circulation, Ahead of Print. Cardiovascular disease remains a leading cause of morbidity and mortality in adults despite recent scientific advancements. Although people are living longer lives, there may be an adverse impact on quality of life, necessitating a greater need for palliative care services and support. Palliative care for adults with advanced cardiovascular disease has the potential to significantly improve quality of life for individuals living with cardiovascular disease and their informal care partners. Effective communication, shared decision-making, age-friendly care principles, and advance care planning are vital components of palliative care and support comprehensive and holistic care throughout the advanced cardiovascular disease trajectory and across care settings. Current evidence highlights the benefits of palliative care in managing symptoms, reducing psychological distress, and supporting both people with cardiovascular disease and their care partners. However, significant gaps exist in palliative care research related to non–heart failure populations, care partner outcomes, and palliative care implementation in diverse populations. This scientific statement (1) discusses the application of effective communication, shared decision-making, age-friendly care, and advance care planning in advanced cardiovascular disease palliative care; (2) provides a summary of recent evidence related to palliative care and symptom management, quality of life, spiritual and psychological support, and bereavement support in individuals with advanced cardiovascular disease and their care partners; (3) discusses issues involving diversity, equity, and inclusion in cardiovascular disease palliative care; (4) highlights the ethical and legal concerns surrounding palliative care and implanted cardiac devices; and (5) provides strategies for palliative care engagement in adults with advanced cardiovascular disease for the care team.

Leggi
Aprile 2025

Interventions to enable and reach patients with heart failure and their caregivers, with palliative care (TIER-HF-PC): a study protocol of a two-armed parallel group, open label randomised controlled trial that evaluates the effectiveness of a tiered model of palliative care in tertiary cardiac institutes in Singapore

Introduction
Palliative care (PC) improves quality of life (QOL). However, PC is currently delivered ‘too little, too late’ in heart failure (HF). Timely interventions to enable and reach patients with HF and their caregivers, with PC (TIER-HF-PC) is a novel, nurse coach-led model of PC that integrates PC into HF care. We will compare the effectiveness of TIER-HF-PC against usual care for improving patient and caregiver health outcomes. We will also evaluate implementation outcomes (such as care experience) of TIER-HF-PC.

Methods and analysis
In TIER-HF-PC, patients undergo regular distress screening. The intensity of PC treatments will be tiered based on the severity of problems detected. Minimally, all patients will receive PC education resources. Patients with moderate-intensity needs will receive PC health coaching. Patients with high-intensity needs will receive a PC physician consultation, on top of PC health coaching. Patients in usual care are not screened but can be referred to a PC physician based on cardiologist discretion.
We will recruit 240 English- or Mandarin-speaking patients with HF and up to 240 caregivers from 3 sites across 2 cardiac centres. Patients will be randomised in a 1:1 ratio to TIER-HF-PC or usual care. We will use an intention-to-treat approach for data analysis. Our primary outcome is patient QOL on the Kansas City Cardiomyopathy Questionnaire at 24 weeks. Secondary outcomes include patient healthcare utilisation, caregiver QOL and cost-effectiveness. All participants who received PC treatments will receive a service evaluation survey. Additionally, a sample of these participants and their treating healthcare staff will be purposively recruited for in-depth semistructured interviews on their TIER-HF-PC experience. Interviews will be thematically analysed. We will evaluate protocol fidelity through case notes and study process audits.

Ethics and dissemination
This study was approved by the SingHealth Institutional Ethics Review Board—review number: 2024–2213. Results of the study will be disseminated when data analysis is complete.

Trial registration number
NCT06244953.

Leggi
Marzo 2025

Interventions to enable and reach patients with heart failure and their caregivers, with palliative care (TIER-HF-PC): a study protocol of a two-armed parallel group, open label randomised controlled trial that evaluates the effectiveness of a tiered model of palliative care in tertiary cardiac institutes in Singapore

Introduction
Palliative care (PC) improves quality of life (QOL). However, PC is currently delivered ‘too little, too late’ in heart failure (HF). Timely interventions to enable and reach patients with HF and their caregivers, with PC (TIER-HF-PC) is a novel, nurse coach-led model of PC that integrates PC into HF care. We will compare the effectiveness of TIER-HF-PC against usual care for improving patient and caregiver health outcomes. We will also evaluate implementation outcomes (such as care experience) of TIER-HF-PC.

Methods and analysis
In TIER-HF-PC, patients undergo regular distress screening. The intensity of PC treatments will be tiered based on the severity of problems detected. Minimally, all patients will receive PC education resources. Patients with moderate-intensity needs will receive PC health coaching. Patients with high-intensity needs will receive a PC physician consultation, on top of PC health coaching. Patients in usual care are not screened but can be referred to a PC physician based on cardiologist discretion.
We will recruit 240 English- or Mandarin-speaking patients with HF and up to 240 caregivers from 3 sites across 2 cardiac centres. Patients will be randomised in a 1:1 ratio to TIER-HF-PC or usual care. We will use an intention-to-treat approach for data analysis. Our primary outcome is patient QOL on the Kansas City Cardiomyopathy Questionnaire at 24 weeks. Secondary outcomes include patient healthcare utilisation, caregiver QOL and cost-effectiveness. All participants who received PC treatments will receive a service evaluation survey. Additionally, a sample of these participants and their treating healthcare staff will be purposively recruited for in-depth semistructured interviews on their TIER-HF-PC experience. Interviews will be thematically analysed. We will evaluate protocol fidelity through case notes and study process audits.

Ethics and dissemination
This study was approved by the SingHealth Institutional Ethics Review Board—review number: 2024–2213. Results of the study will be disseminated when data analysis is complete.

Trial registration number
NCT06244953.

Leggi
Marzo 2025

Hospital-based specialist palliative care involvement before and during the COVID-19 pandemic: secondary analysis of a regional retrospective decedent cohort study in Ottawa, Canada

Objectives
To determine the occurrence and clinicodemographic associations of hospital-based specialist palliative care (SPC) referral before and during the COVID-19 pandemic, timing of completed SPC consultation and comparative prevalence of ‘no cardiopulmonary resuscitation (CPR)’ orders, and end-of-life medication use, according to SPC involvement.

Design
Cross-sectional secondary analysis of a retrospective cohort study with a pre-pandemic (November 2019 to February 2020) group (Pre-COVID, n=170) and two intra-pandemic (March to August 2020) groups, one without (COVID–ve, n=170) and one with COVID-19 infection (COVID+ve, n=85). In the cohort study, Pre-COVID and COVID–ve group decedents were matched 2:1 on age, sex and care service (internal medicine/intensive care unit (ICU)) at death with COVID+ve decedents. In our current secondary analysis, clinicodemographic variables associated with SPC referral were examined in multivariable logistic regression, reporting adjusted ORs (aORs) and 95% CIs.

Setting
One quaternary and two tertiary acute care hospitals.

Participants
Decedent cohort with a terminal hospital admission (N=425).

Main outcome measures
SPC referral (yes/no) and timing of completed SPC consultation before death. Additional outcomes included ‘no CPR’ status and end-of-life medication prescription and dosing.

Results
SPC referral occurred in 70 (41.2%), 71 (41.8%) and 26 (30.6%) of the Pre-COVID, COVID–ve and COVID+ve groups, respectively (p=0.18). The aORs for SPC referral were lower for deaths in ICU (0.07; 95% CI 0.03 to 0.16) and admissions from nursing homes/long-term care (0.45; 95% CI 0.23 to 0.9), and higher for active cancer (2.5; 95% CI 1.39 to 4.39). Recipients of SPC consultation, compared with non-recipients, more frequently had a ‘no CPR’ order, had it placed earlier and were more frequently prescribed palliative end-of-life medications.

Conclusions
Hospital SPC consultation rates early in the COVID-19 pandemic were largely maintained at pre-pandemic levels. Having active cancer was positively associated with SPC referral, whereas both ICU death and having a nursing home/long-term care pre-admission source were negatively associated with referral.

Leggi
Marzo 2025

Evaluation of Electronic Palliative Care Coordination Systems to support advance care planning for people living with life-threatening conditions (PREPARE): protocol for a multicentre observational study using routinely collected primary and secondary care data in England

Introduction
Electronic Palliative Care Coordination Systems (EPaCCS) are electronic registers that aim to facilitate documentation and sharing of up-to-date information about patients’ end-of-life preferences and plans for care among different health services. They aim to improve patients’ experiences and outcomes and mitigate costs linked to undesired aggressive care. However, evidence on the equitable delivery of EPaCCS and the extent to which advance care planning (ACP) enhances end-of-life care remains sparse. This study aims to explore the effect of EPaCCS on healthcare outcomes, service utilisation, and costs. It will also estimate the association between social determinants of health and the content and use of EPaCCS.

Methods and analysis
The PREPARE project is a retrospective observational cohort study conducted in two phases. We will analyse routinely collected data from three EPaCCS registers from London, Bradford and Leeds. The first phase will use descriptive analysis to describe the completeness of EPaCCS, the content of EPaCCS, and socio-demographic and clinical characteristics of individuals with EPaCCS, and will model the relationship between social determinants of health and completion of ACP components and the creation of EPaCCS. The second phase will use a natural experiment to compare quality indicators (place of death and hospital use) between individuals with EPaCCS and those without. The control groups will be identified through the Leeds decedent dataset and through linking the London EPaCCS register to an electronic record used in North West London. Also, we will quantify healthcare costs and outcomes.

Ethics and dissemination
Research approval has been secured from the Health Research Authority (ref 24/LO/0194), London – South East Research Ethics Committee (ref 24/LO/0194) and Confidentiality Advisory Group (ref 24/CAG/0046). Dissemination of findings will occur through peer-reviewed publications, knowledge exchange events and collaborative efforts with patient and public involvement partners.

Leggi
Marzo 2025