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.
The classification of diseases requiring end-of-life care into three death trajectories (organ failure, frailty and terminal illness) reflects the definition of Lunney, Lynn and Hogan (2002[16]). Organ failure mainly refers to heart disease: chronic ischaemic heart disease is the main cause of death. In older people, dementia, Alzheimer’s disease and senility are the most common causes of deaths related to frailty. Malignant neoplasm of bronchus and lung is the most common cause of death among those with terminal illness.
It is noteworthy that the period under examination has been characterised by a change in the codification practices for dementia and Alzheimer’s disease, which have been increasingly codified as the main cause of death; this may have influenced the scale of the trend reported (Roth et al., 2018[18]).
The data shown in Figure 10.28 on place of death refer to years 2009 and 2019 or the closest years available. Caution is needed in cross-country comparisons, as data might refer to different years. The share of deaths at the hospital has been calculated by the OECD Secretariat, based on the available data.
Sources: World Health Organization mortality database (WHO, 2019[19]) and Lunney, Lynn and Hogan (2002[16]) for the definition of the EOLC death trajectories.
References
[5] de Bienassis, K., A. Llena-Nozal and N. Klazinga (2020), “The economics of patient safety Part III: Long-term care: Valuing safety for the long haul”, OECD Health Working Papers, No. 121, OECD Publishing, Paris, https://dx.doi.org/10.1787/be07475c-en.
[1] ILO and OECD (2019), “New job opportunities in an ageing society”, OECD, Paris, http://www.oecd.org/g20/summits/osaka/ILO-OECD-G20-Paper-1-3-New-job-opportunities-in-an-ageing-society.pdf.
[16] Lunney, J., J. Lynn and C. Hogan (2002), “Profiles of Older Medicare Decedents”, Journal of the American Geriatrics Society, Vol. 50/6, pp. 1108-1112, https://doi.org/10.1046/j.1532-5415.2002.50268.x.
[7] Mair et al (2017), The Simpathy consortium. Polypharmacy Management by 2030: a patient safety challenge.
[15] Muir, T. (2017), “Measuring social protection for long-term care”, OECD Health Working Papers, No. 93, OECD Publishing, Paris, https://dx.doi.org/10.1787/a411500a-en.
[14] OECD (2020), “Focus on spending on long-term care”, OECD, Paris, https://www.oecd.org/health/health-systems/Spending-on-long-term-care-Brief-November-2020.pdf.
[2] OECD (2020), Who Cares? Attracting and Retaining Care Workers for the Elderly, OECD Health Policy Studies, OECD Publishing, Paris, https://dx.doi.org/10.1787/92c0ef68-en.
[4] OECD (2020), “Workforce and safety in long-term care during the COVID-19 pandemic”, OECD Policy Responses to Coronavirus (COVID-19), OECD Publishing, Paris, https://doi.org/10.1787/43fc5d50-en.
[17] OECD (2019), Health at a Glance 2019: OECD Indicators, OECD Publishing, Paris, https://dx.doi.org/10.1787/4dd50c09-en.
[10] OECD (2018), Care Needed: Improving the Lives of People with Dementia, OECD Publishing Paris, https://dx.doi.org/10.1787/9789264085107-en.
[6] OECD (2017), Tackling Wasteful Spending on Health, OECD Publishing, Paris, https://doi.org/10.1787/9789264266414-en.
[3] OECD (forthcoming), “Rising from the COVID-19 crisis: Policy responses in the long-term care sector”, OECD Policy Responses to Coronavirus (COVID-19), OECD Publishing Paris.
[9] OECD (forthcoming), “Supporting informal carers: Policies to leave no carer behind”, OECD Health Working Papers, OECD Publishing, Paris.
[13] OECD/Eurostat/WHO (2017), A System of Health Accounts 2011: Revised edition, OECD Publishing, Paris, https://doi.org/10.1787/9789264270985-en.
[12] Oliveira Hashiguchi, T. and A. Llena-Nozal (2020), “The effectiveness of social protection for long-term care in old age: Is social protection reducing the risk of poverty associated with care needs?”, OECD Health Working Papers, No. 117, OECD Publishing, Paris, https://dx.doi.org/10.1787/2592f06e-en.
[18] Roth, G. et al. (2018), “Global, regional, and national age-sex-specific mortality for 282 causes of death in 195 countries and territories, 1980–2017: a systematic analysis for the Global Burden of Disease Study 2017”, The Lancet, Vol. 392/10159, pp. 1736-1788, https://doi.org/10.1016/S0140-6736(18)32203-7.
[8] Suetens, C. et al. (2018), “Prevalence of healthcare-associated infections, estimated incidence and composite antimicrobial resistance index in acute care hospitals and long-term care facilities: results from two European point prevalence surveys, 2016 to 2017”, Euro surveillance : bulletin Europeen sur les maladies transmissibles = European communicable disease bulletin, Vol. 23/46, https://doi.org/10.2807/1560-7917.ES.2018.23.46.1800516.
[19] WHO (2019), Health statistics and information system, https://www.who.int/healthinfo/mortality_data/en/ (accessed on 18 March 2020).
[11] Wiener, J. (2009), Why Are Nursing Home Utilization Rates Declining, US Department of Health and Human Services, Centers for Medicare and Medicaid Services.