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Discussing our mortality, and what we wish for our end-of-life is one of the most difficult conversations to have. As populations continue to age and increasingly grapple with chronic diseases, the need for end-of-life care to make this period as comfortable as possible has never been more urgent. And though the number of people in need of such care is expected to grow from nearly 7 million people across the OECD in 2019 to 10 million by 2050, most countries are still far from ensuring timely and appropriate end-of-life care.
In February 2023, the OECD published its first report on this topic : Time for better care at the end of life, highlighting that limited access to adequate care, particularly in non-hospital settings, prevents people from shaping their end-of-life experience to their preferences. The reality is that when people do receive care, it is often misaligned with their needs and wishes. What’s more, the report also shows that public funding is unequal across different settings of care, which means that people have too little choice at this key moment in life.
Find out more on the Forum Network: Reimagining a New Care Paradigm in the Era of Healthy Ageing by Jisella Dolan, Michael Hodin & Francesca Colombo
OECD countries are fast approaching a future where there are more old than young; the systems and assumptions that have guided elder care will not continue to work. But this also presents an incredible opportunity: to reimagine long-term care.
Less than half of people needing end-of-life care currently receive it. Access to end-of-life care in non-hospital settings is particularly challenging, resulting in most people passing away in a hospital despite preferring to end their life at home. Preferences of care are rarely recorded, as less than half of people aged 65 or older across the OECD countries officially nominate a proxy person or clearly indicate their preferences. This means that it remains very difficult to tailor care to personal preferences.
One-third of older patients hospitalised at the end of life receive treatment providing neither comfort nor prolonging life, while driving up associated costs.
The care received at the end of life is often inadequate, placing too much emphasis on medical intervention, and neglecting palliative care and the psychological and social needs of patients and their families. Across European countries, between 10% and 25% of people aged 65 or older reported receiving too little pain medication, too little help breathing or too little help with anxiety before dying. At the same time overtreatment at the end of life is also frequent. One-third of older patients hospitalised at the end of life receive treatment providing neither comfort nor prolonging life, while driving up associated costs.
Not all end-of-life care services are publicly funded across OECD countries, leading to high out-of-pocket costs in some countries, particularly during the last year of life. Both people at the end of their life and their relatives must then bear the financial burden of care on top of the huge emotional toll of such a critical moment in life. Currently, public funding mostly covers services available in hospital settings, with hospital expenditure representing between 32% and 67% of end-of-life care expenditure in OECD countries. With fewer funds going towards end-of-life care in non-hospital settings such care is often less accessible.
Adequately addressing end-of-life challenges requires sound policies based on strong evidence. Yet only 30% of OECD countries have a national research agenda on end-of-life care, with fragmented and insufficient data infrastructure. While some measures to improve end-of-life care are already in place in OECD countries, persistent challenges call for further improvements and a greater policy priority to improve the experience of people at the end of life and that of their relatives. The OECD report Time for Better Care at the End of Life identified key principles to evaluate the performance of end-of-life care across countries, summarised in the following framework:
Source: Adapted from OECD (2023), Time for Better Care at the End of Life, OECD Health Policy Studies, OECD Publishing, Paris, https://doi.org/10.1787/722b927a-en.
Urgent action is needed. The following key policy options are the first steps that policy makers can take to ensure accessible, people-centred, and high-quality end-of-life care services that are appropriately financed and evidence-based.
- Increasing access to adequate end-of-life care services. Addressing staffing shortages and improving training across all settings of care to increase access to end-of-life care in non-hospital settings. Canada, England, and the United States have already developed training and guidance for professionals working with people at the end of life. Furthermore, incentivising the delivery of cost-effective end-of-life services can boost the use of more financially sustainable care. For instance, evidence from Belgium, Canada and the United States has shown that non-hospital care can be cost-effective, reducing the use of acute care at the end of life and decreasing overall health expenditure.
- Aligning end-of-life care to people’s preferences. Increasing public knowledge around end-of-life care and fighting the stigma around death can boost conversations on care preferences and the use of documents recording people’s wishes. For instance, France has undertaken public campaigns to eradicate the stigma around death and dying, while several OECD countries have put in place multidisciplinary teams, which can also support the delivery of adequate care at the end of life, facilitating discussion of care preferences and improving care coordination.
- Measuring and strengthening the quality of care. Better quality standards, monitoring and evaluation, also through the collection of internationally comparable indicators, would be key to improving the quality of care while also building up a sound data infrastructure to inform policy making. Ireland and Sweden are already collecting sound data and indicators of end-of-life care quality and a number of countries are contributing to the OECD collection of internationally comparable indicators on end-of-life care.
The OECD is continuing efforts to support countries in improving end-of-life care by collecting and publishing internationally comparable indicators on end-of-life care. A collective effort is needed now more than ever to support people in the most vulnerable moment of their life.
To learn more, check out the OECD End-of-life care website