Executive summary

Across OECD countries, timely access to adequate end-of-life care to relieve symptoms for those with terminal illnesses such as pain, breathlessness, and distress, named as palliative care, is low, with less than 40% of those in need receiving care. Despite a preference to die at home, half of deaths happen in hospital, often due to lack of in-home and community-based support. Provision of palliative care to provide comfort and improve quality of life often happens at a late stage in the process because mechanisms to ensure timely access are scarce. Less than a third of the OECD countries have national programmes to monitor the time span between referral and delivery of end-of-life care services. Finally, the COVID-19 pandemic has brought to stark prominence the reality of overwhelmed health systems which struggled to provide end-of-life care and the necessity for systems to be scalable and adaptable in the face of emergencies.

Care delivered does not always reflect the wishes of the patient and quality of care is still too often poor for people at the end of life. Conversations on health status and care possibilities at the end of life are less frequent than they should, and the voice of patients and their relatives is still too often left out of decisions concerning care: only one-quarter of patients and professionals write advance directives on people’s wishes. Holistic care is not always available, and people do not always receive adequate symptom relief, with 10% to 25% of people who died at the age of 65 or older receiving too little pain medication, too little help breathing or too little help with anxiety. Alongside the under-treatment of their symptoms, people receive aggressive treatment that is not likely to provide comfort, prolong life or be cost-effective: this is the case for around one-third of older patients who are hospitalised at the end of life. Fragmented systems undermine effective end-of-life care delivery and contribute to patients often experiencing multiple transitions across settings near the end of life. There is also insufficient measuring and benchmarking about the quality of end-of-life care across countries. More than one in four OECD countries do not have programmes of audit and evaluation to monitor quality at the end of life.

Care at the end of life also suffers from funding deficiencies and lack sufficient evidence-based policies. Public social protection systems provide partial coverage of expenses incurred to alleviate the symptoms of end of life in a third of OECD countries, leading to high out-of-pocket expenditures and strong reliance on family members. More importantly, public funding mainly covers services provided in hospitals, which likely influence the place of death and contribute to increase public spending. In OECD countries, hospital expenditure ranges between 32% and 67% of end-of-life care expenditures. Research in end-of-life care is insufficient and data infrastructure to provide a full picture of end-of-life care across multiple services and settings is still weak. Less than 30% of OECD countries have a national research agenda and less than 16% a local research agenda on the topic.

Such shortcomings call for greater policy priority and measures to improve end of life care.

First, addressing staffing shortages is key to improve access of care through expanding the knowledge on end-of-life care across different professionals and care settings. Besides training more health professionals with expertise in managing end-of-life care, incentivising end-of-life care in the preferred settings of care will be helpful. Australia has shown that nurse-led models are effective to facilitate access, especially in sparely populated areas, for example. New Zealand created regionally managed clinical networks to combine primary-care teams with support from specialists, thereby improving the availability of trained staff in non-hospital settings, especially in primary care and in long-term care. Time targets and guidelines can also help ensuring timely access to care by optimising care pathways. Ontario, Canada is using automated tools to perform screening while the United States sets timelines for needs assessments.

More information on end-of-life care among health care staff together with better evaluation are crucial to ensure that people’s wishes are respected, and that quality of care improves. Improved training for health care workers can help to foster communication and involvement of patients and their families in the decision-making regarding their loved ones’ health. Health care professionals who received training on end-of-life care are less likely to provide overtreatment and aggressive care at the end of life. Canada and the United States have developed training and guidance for health care professionals to support them to have open communication with people at the end of their life. Multidisciplinary teams able to provide holistic care and ensuring end-of-life care services in the patients’ preferred settings are important steps towards comprehensive care centred on patients’ and their family’s needs. In England, guidelines encourage multidisciplinary teams work and underline the crucial role played by advance care planning and electronic records sharing within the multidisciplinary team, to ensure care co-ordination. This needs to be accompanied by greater public discussion on death and dying to improve people’s knowledge and to reduce stigma around end-of-life care, such as public campaigns undertaken in France. Further to training, decision-making processes at the end of life should also be improved, including through closer involvement of people at the end of life and their relatives. Better quality standards to monitor and evaluate quality of life also allowing for international comparisons will be key. In Australia, the Palliative Care Outcomes Collaboration provides a framework intended to be integrated into regular clinical assessment.

There is room to prioritise the effective distribution of resources in end-of-life care and promote the design and implementation of more evidence-based policies. Improving payment systems that encourage the provision of more cost-effective services would also be paramount to ensure that end-of-life care is high-quality and financially sustainable. In particular, early access to palliative care services can both improve quality of end-of-life care and provide a better use of resources. Evidence from Belgium, Canada and the United States shows that access to palliative care out of hospital settings reduced use of intensive care units, medication, and overall health expenditures. The field lacks a strong focus on the use of research and data to inform policy making. It would benefit from promoting funding and developing institutional capacity to increase research projects on end-of-life care in areas where knowledge remains limited, such as timeliness of access, models of care delivery, and cost-effectiveness of interventions. Belgium, Ireland, France, and the Netherlands, for instance, have developed strong organisations supporting palliative care research. The availability of linked and timely data would facilitate international benchmarking and support to policy making around end-of-life care. Sweden has the Swedish Register of Palliative Care for that purpose while Ireland has indicators to measure accessibility of care.