Who needs, receives and misses out on palliative and end-of-life care? A population-based study to identify needs and gaps in a regional health service.

Objective The aim of this study was to assess the unmet need for palliative and other end-of-life care, as well as the sociodemographic and diagnostic factors associated with suboptimal access, among residents in an Australian region. Methods A cross-sectional descriptive and analytical study was performed using non-identifiable linked data from four administrative and two clinical datasets. The study population comprised 3175 patients aged ≥15 years who died in hospital in 2016 and 2017. The main outcome measures were the proportion of decedents potentially benefitting from end-of-life care and receiving end-of-life care. Results An estimated 74.8% of decedents needed palliative or other end-of-life care in the year before death. Approximately 13.3% did not receive any end-of-life care despite its potential benefit. The highest proportions with 'unmet need' were decedents with chronic obstructive pulmonary disease (31.0%) and heart failure (26.3%). Adjusting for sociodemographic and diagnostic factors, access was lowest among those aged <65 years (adjusted odds ratio (aOR) 0.44; 95% confidence interval (CI) 0.31-0.64) and those with heart failure (aOR 0.58; 95% CI 0.47-0.72). Conclusions Estimates of need and access provide a sound basis for planning local palliative and end-of-life care services. These methods can be used on an ongoing basis to monitor service delivery. What is known about this topic? There is a small but expanding literature on estimating the need for palliative care at a population level. There is a lack of data regarding access to palliative and other end-of-life care across multiple settings (e.g. home, specialist palliative care unit, hospital) and patient groups (e.g. defined by sociodemographics and diagnostics). What does this paper add? The study builds on previously used methods for estimating the need for palliative care, with some refinements, including the addition of 'other clinical indications' and the use of weights to derive more realistic estimates. The estimates of need are consistent with recent estimates from Australia and overseas, whereas the estimates of access are similar to a recent Australian estimate, but higher than estimates from overseas. The gaps in access are highest among those with the major types of chronic organ failure, particularly heart and respiratory. What are the implications for practitioners? The study demonstrates how routinely collected data at a regional level can be used to estimate need and access to palliative and end-of-life care, in the hospital and in the community. These methods of estimating need and unmet need can be used to inform the planning and development of services, as well as to monitor progress with implementation of changes in service provision.

Preferred Place of Death-A Study of 2 Specialist Community Palliative Care Services in Australia.

Choice and preference are fundamental to person-centered care and supporting personal choice at the end of life should be a priority. This study analyzed the relationship between a person's preferred place of death and other individual variables that might influence their actual place of death by examining the activity of 2 specialist community palliative care services in Australia. This was a cross-sectional study of 2353 people who died between 01 August 2016-31 August 2018; 81% died in their preferred place. Sex, type of life-limiting illness, and length of time in care were the only variables significantly related to dying in one's preferred place. Women were more likely to die in their preferred place than men (84% v 78%) and people with a non-cancer diagnosis were 7% more likely to die in their preferred place than those with cancer, particularly when that place was their private residence (74% v 60%) or Residential Aged Care Facility (98% v 89%). Someone in care for 0-7 days had 4.2 times greater odds of dying in their preferred place (OR = 4.18, 2.20-7.94), and after 21 days in care, people had 4.6 greater odds of having a preference to die in a hospital (OR = 4.63, 3.58-5.99). Both community palliative care services have capacity and a model of care that is responsive to choice. These findings align with known referral patterns and disease trajectories and demonstrate that it is possible to support the majority of people in the care of community palliative care services to die in their preferred place.

A survey of patients' experience of pain and other symptoms while receiving care from palliative care services.

CONTEXT: In Australia, patients at the end of life with complex symptoms and needs are often referred to palliative care services (PCSs), but little is known about the symptoms of patients receiving palliative care in different settings. OBJECTIVE: To explore patients' levels of pain and other symptoms while receiving care from PCSs. METHOD: PCSs registered through Australia's national Palliative Care Outcomes Collaboration (PCOC) were invited to participate in a survey between 2008 and 2011. Patients (or if unable, a proxy) were invited to complete the Palliative Care Outcome Scale. RESULTS: Questionnaires were completed for 1800 patients. One-quarter of participants reported severe pain, 20% reported severe 'other symptoms', 20% reported severe patient anxiety, 45% reported severe family anxiety, 66% experienced depressed feelings and 19% reported severe problems with self-worth. Participants receiving care in major cities reported higher levels of depressed feelings than participants in inner regional areas. Participants receiving care in community and combined service settings reported higher levels of need for information, more concerns about wasted time, and lower levels of family anxiety and depressed feelings when compared to inpatients. Participants in community settings had lower levels of concern about practical matters than inpatients. CONCLUSIONS: Patients receiving care from Australian PCSs have physical and psychosocial concerns that are often complex and rated as 'severe'. Our findings highlight the importance of routine, comprehensive assessment of patients' concerns and the need for Specialist Palliative Care clinicians to be vigilant in addressing pain and other symptoms in a timely, systematic and holistic manner, whatever the care setting.