End Of Life Services Research Articles

End of life services: public and patient involvement

This article describes the outcomes from a national pilot project undertaken by the NHS National Centre for Involvement and Liverpool Primary Care Trust to establish how best to undertake patient and public involvement (PPI) in respect of end of life (EOL) services, given the intrinsic emotional and cultural difficulties. The project targeted service improvement distinguishing between patients with cancer, dementia and long term conditions. Methods included mapping exercises, systematic documentation reviews, surveys, targeted workshops, follow-up interviews and emails, and an organisational learning event. The project highlighted important lessons, distinguishing where commonality applies and where allowance should be made for patients' different diseases. The main difference in handling PPI for EOL care across the three disease groups concerns timing. It is better to engage with people about EOL care during the early stages of their condition, on a primarily prospective basis, rather than leave engagement until a time when it would be intrusive or inappropriate. PPI in EOL care is of critical importance to everyone in society. Improved engagement enables improved EOL services and better patient experiences, through greater choice and involvement in care, thereby facilitating a dignified experience of death.

Setting up an end of life group for a health and social care economy: start small, aim big!

BackgroundThe End of Life (EoL) Strategy (2008) recommends a care pathway approach for commissioning and delivering integrated EoL health and social care (H&SC) services. The historical development and redesign of...

Using care profiles to commission end-of-life services

In early 2010, Liverpool Primary Care Trust (PCT) undertook a project to establish whether a care profiles methodology could be used to commission end-of-life (EoL) services. The Department of Health (DH) originally used them for a variety of services in the 1990s. The project sought to adapt the original care profiles structure for commissioning purposes, and produce a series of care profiles that would cover the full EoL care pathway. The DH required PCTs in England to undertake local reviews of EoL services ahead of its publication of the National EoL Strategy in 2008. Related cross-sector work in Liverpool highlighted the need for a means of specifically commissioning EoL services. It was contended that care profiles offered the opportunity to set service requirements in respect of skill mix, delivery, quality and outcomes for each stage of the EoL pathway, which could be costed subsequently. An iterative approach was adopted involving workshops and consensus, based on action learning events, which incorporated and adapted past approaches for developing care profiles. Four half-day workshops were held, each targeting one EoL stage, with the outputs evaluated by an external reference group. A full cross-section of commissioning, provider and service user interests were involved. The project was successful, with its recommendations subsequently used to commission EoL services across Liverpool. It was concluded that the basic service requirements for EoL care are the same, irrespective of the related disease. The strength of care profiles is their simplicity and flexibility. They complement and augment integrated care pathways, and by requiring the recording of outcomes throughout the care process, they aid quality and audit processes. They should be transferable to other conditions, with benchmarking enabling improved efficiency. They represent the type of clinically relevant and detailed vehicle essential for clinical commissioning groups.

Commissioning end of life services using care profiles

The Department of Health (DH) required local reviews of End of Life (EoL) services in England ahead of the publication of its National EoL Strategy in 2008. Related cross-sector work...

Using end-of-life care profiles to support advance care planning

In 2010, Liverpool PCT pioneered a care profiles approach to commissioning End of Life (EoL) services. This enabled comprehensive service requirements to be set in respect of skill mix, delivery,...

A retrospective analysis of preferred and actual place of death for hospice patients

The purpose of this study was to explore recording rates of preferences, and the preferred and actual place of death among hospice patients. Data was collected retrospectively from a group of three hospices over a 6-month period. Of 298 patients, 174 patients (58.4%) had no expressed preference for place of death. The congruence of preferred and actual place of death was: home 52.5%; hospice 86.2%; hospital 100%; and care home 50%. The overall congruence was 61.7% and kappa value was 0.38 (0.23-0.52, 95% confidence interval). The low rate of expressed preferences suggests that congruence of preferred and actual place of death was a suitable outcome measurement for less than half of hospice patients. A wider range of patient-focused indicators for identifying the quality of end-of life services is needed as preferred place of death may not be the only suitable indicator for all patients.

Support for the bereaved

Most people die in hospital, which means nurses need to be able to deal sensitively with relatives. Nurses are developing bereavement and end of life services.

An architecture design with data model for product recovery management systems

Due to concerns about environmental protection and resource utilization, product lifecycle management for end-of-life (EOL) has received increasing attention in many industrial sectors including manufacturing, maintenance/repair, and recycling/refurbishing of the product. To support these functions, crucial issues are studied to realize a product recovery management system (PRMS), including: (1) an architecture design for EOL services, such as remanufacturing and recycling; (2) a product data model required for EOL activity based on international standards; and (3) an infrastructure for information acquisition and mapping to product lifecycle information. The presented works are illustrated via a realistic scenario.

Researching a Best-Practice End-of-Life Care Model for Canada

The vast majority of the 220,000 Canadians who die each year, principally of old age and progressive ill health, do not have access to specialized hospice or palliative care. Hospice and palliative care programs are unevenly distributed across Canada, with existing programs limited in capacity and services varying considerably across programs. End-of-life (EOL) care is defined as "The services that may be needed by dying persons and their families or friends in the last year of life, as well as bereavement services following death." Although some health and social services may be available, most dying Canadians are in the difficult position of not having ready access to a full range of services that could ease their final days of life. Most are thus at risk of uncoordinated and potentially inadequate EOL care. Among all persons, dying persons are arguably the most vulnerable. The dying process is often difficult as a result of emotional and physical challenges. Although the loving support of family and friends for dying persons is irreplaceable, EOL care is an important public obligation. A synthesis research project was conducted to identify a best-practice EOL care model for Canada, one featuring coordinated or integrated EOL care. Through site visits, literature reviews, Web-based surveys, and a home care data analysis, four essential components for a best-practice integrated EOL care model for Canada were identified: (a) universality, (b) care coordination, (c) assured access to a broad range of basic and advanced EOL services, and (d) EOL care provision regardless of care setting. This model is offered as a guide for the development of EOL care services across Canada.

Utilization of end-of life services for advanced heart failure patients

Background: Survival is poor in heart failure (HF), with only 50% of patients surviving longer than 5 years. HF contributes to 285,000 deaths annually. This is almost 3 times higher than the combined death rate from breast and lung cancer. Since the goal of medical treatment is to prevent premature death, not death itself, end-of-life (EOL) care remains an integral but easily overlooked aspect of care for patients with advanced HF. Aim: To assess to what extent EOL care services are utilized in patients with advanced HF and to identify possible reasons why these services may be underused.

Determinants of long-term survival in patients with congestive heart failure: the independent prognostic value of physical signs and symptoms

Background and Hypothesis: Technological advances have placed increasing emphasis on biochemical, echocardiographic, and invasivemeasurements for the purposes of predicting clinical outcomes among patients with heart failure (HF). We sought to re-evaluate the relationship between symptoms and physical findings and risk of death among a contemporary cohort of patients with heart failure treated with angiotensin-converting enzyme (ACE) inhibitors. Material and Methods: We performed retrospective analyses using the public access version of the Digitalis Investigation Group (DIG) trial database. Kaplan-Meier survival analyses with log-rank tests and proportional hazards models were used to study the relationship between symptoms and physical findings and risk of death among DIG trial participants. Results: A total of 7788 patients with HF were followed for a mean of 37 months. Of these, 77% were males, 65% had prior myocardial infarction, 94% were on ACE inhibitors, and 81% on diuretics. Mortality was significantly higher among patients with elevated jugular venous pressure (log-rank p 0.001), rales (p 0.001), edema (p 0.001), a third heart sound (p 0.001), and higher NYHA functional class (p 0.001). Proportional hazards models were constructed with adjustment for age, gender, race, ejection fraction, bodymass index, serum creatinine, duration of HF, heart rate, systolic and diastolic blood pressure, diabetes, etiology of HF, and treatment with ACE inhibitors, diuretics, and digoxin. After simultaneous adjustments for all these factors, elevated jugular venous pressure (Hazard Ratio, HR 1.4, 95% CI 1.3–1.6, p 0.0001), rales (HR 1.6, 95% CI 1.4–1.9, p 0.001), edema (HR 1.4, 95% CI 1.2–1.5, p 0.001), third heart sound (HR 1.2, 95% CI 1.1–1.4, p 0.001), and higher NYHA class (HR 2.1, 95% CI 1.7–2.8, p 0.001) remained strong independent predictors of death. Per the DIG trial protocol, the chronicity or persistence of symptoms and physical findings were noted at study enrollment as existing only within the prior month (“present”), only prior to that (“past”) or both (“past-present”). This simple designation was highly related to the risk of death. Patients without a history of rales had 74% actuarial survival. Past history of rales was associated with a 7% decline in survival (95% CI 6–9), present rales with a 14% decline (95% CI 10–19), and past-present rales with a 24% decline (95% CI 21–27) (p 0.001). Similar trends were observed for elevated jugular venous pressure, edema, and third heart sound. Utilization of End-of Life Services for Advanced Heart Failure Patients Patricia C. Shreve, Theo E. Meyer, Anna M. Bernard, Donna T. Gemme, Donna Muscente1—Advanced Heart Failure Center, UMMHC, Worcester, MA