End-of-life care

Improving care at the end of life, which refers to the health and social care provided as an individual nears the end of life, is becoming a growing global public health priority and an important aspect of people-centred policies. With ageing populations and changing epidemiology of disease, more people will require better care and support in their last phase of life. During the COVID-19 pandemic, containment measures adopted to prevent the spread of the virus – including bans on visitors to LTC facilities and hospitals, even for dying patients – ran counter to key principles of high-quality, person-centred end-of-life care (EOLC). The difficult experience at the end of life for many patients and their families during the pandemic has underscored the importance of person-centred, accessible and high-quality EOLC services.

The vast majority of all deaths between 2001 and 2017 in OECD countries were related to diseases requiring EOLC, classified into three death trajectories: organ failure, frailty and terminal illness (Figure 10.27). These trajectories often entail suffering and functional decline in the last years or months of life, requiring EOLC services (Lunney, Lynn and Hogan, 2002[16]). Between 2001 and 2017, organ failure represented the biggest death trajectory in OECD countries, despite an overall slight (-7%) reduction in the death rate between 2001 and 2017. The Slovak Republic, Korea and the United Kingdom experienced a reduction of more than 17% in this trajectory, while Chile, the Czech Republic, Finland, Hungary, Lithuania and Mexico recorded an increase over the same period.

Terminal illness constitutes an increasing burden in OECD countries. This is particularly the case in Estonia, Slovenia, the Slovak Republic and Korea, where deaths from terminal illnesses increased by more than 17% between 2001 and 2017. In contrast, Australia, the Czech Republic, Iceland, Japan, Mexico and the United States experienced a fall by 5% or more. OECD countries are rapidly ageing, and death rates related to frailty correspondingly grew substantially between 2001 and 2017. While 43% of deaths occurred in people aged over 80 in OECD countries in 2001, by 2017 this had increased to 51%. The proportion of people aged over 80 is expected to further double between 2017 and 2050 (OECD, 2019[17]), and the proportion of deaths due to frailty is likely to increase even further. While Poland, Sweden, Chile, Finland and the Czech Republic experienced a slight reduction in deaths related to frailty between 2001 and 2017, Lithuania, the Slovak Republic, Luxembourg, Slovenia and Germany registered an increase of 30% or more.

EOLC services can be provided in a variety of settings, including hospitals, people’s homes, nursing homes or hospices; good EOLC entails that people can choose where to be cared for and die. Place of death is widely considered a measure of EOLC quality and people-centredness, as the patient’s home is often the preferred place of death. Hospitals remain the most common place of death in most OECD countries, however (Figure 10.28). In 2019, across 22 OECD countries with comparable data, hospitals were the setting for 50% of deaths on average, and for over 70% of deaths in Korea and Japan. The Netherlands (20%), Switzerland (32%) and the United States (35%) reported the lowest proportion of deaths occurring in hospitals. In the Netherlands, both LTC facilities and private homes play an important role, with 36% of deaths occurring at home and 35% in LTC facilities (2017 data). Similarly, in Switzerland, 36% of deaths occurred in LTC facilities in 2018. In Norway, deaths in non-hospital institutions increased from 40% to 46% between 2001 and 2011. Home deaths are most common in Chile (47% in 2017), and the proportion is growing in the United States (23% in 2001; 31% in 2018) and the United Kingdom (19% in 2006; 24% in 2018).

In a majority of countries, deaths within hospitals decreased between 2009 and 2019, particularly in the United Kingdom. Only Estonia, Germany, Korea, Latvia, Lithuania and Switzerland experienced an increase. In Korea, the trend is driven in part by reductions in home deaths over the same period. Nevertheless, the high proportion of people dying in hospitals has raised concerns around the institutionalisation and medicalisation of death and the possible poor alignment with people’s preferences.

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