2. Removing barriers to access end-of-life care

The COVID-19 pandemic has brought attention to the lack of proper support for people at the end of life, the fact that access to such care was not always possible and the importance of reducing suffering for those dying. Similarly, the Lancet Commission on Palliative Care and Pain Relief highlighted the important gap in access to palliative care and the large numbers of people still experiencing serious health-related suffering that could be ameliorated by palliative care (Knaul et al., 2018[1]). While a large proportion of the gap in access happens in low- and middle-income countries, the lack of timely access to palliative care for terminally ill patients has also been pointed out in many OECD countries (Palm et al., 2021[2]).

This chapter emphasises socio-economic and geographical inequalities in access to health care and unmet needs in OECD countries in end-of-life care. Inequalities may arise because of differences in mortality risks by socio-economic status, as there are gaps in life expectancy by income and education and higher premature deaths for those more disadvantaged because of higher cardiovascular risk and differences in health behaviour and in health literacy (Bosworth, 2018[3]; Murtin et al., 2017[4]). There are also inequalities in the use of health care at the end of life because geographical imbalances in service provision can lead to more acute and hospital-based end-of-life care and less palliative care in some areas, including those that are less sparsely populated or more economically disadvantaged (French, 2021[5]). Such inequalities in the end-of-life experience can also result in unmet needs whereby some groups in society are less likely to receive services or have special needs that are not well met.

In addition, the chapter highlights the importance of end-of-life care1 to be offered more broadly. First, it is important to expand training to have a better availability of specialist palliative care services and to overcome delays in referral to such services. Second, expanding generalist training and integrating care of different professionals seems more relevant than ever. To overcome access constraints, the Lancet Commission on the Value of Death emphasises the importance of expanding relevant trainings for health and social care professionals on what are deemed to be core skills (Sallnow et al., 2022[6]). With more professionals competent in caring for dying patients and their families at home, in care homes and in the community, together with access to essential medicines and supplies for relieving symptoms, access constraints could be progressively overcome. Third, timely diagnosis and referral to adequate services should also be improved to ensure adequate access.

The remainder of the chapter is organised as follows. Section 2.1 highlights the sub-principles of an accessible end-of-life care. Section 2.2 illustrates the consequences of current health systems lacking such focus, while 2.3 explores policies and best practices to ensure the well-staffed, equitable, and timely end-of-life care.

This section outlines why it is critical to ensure sufficient access to care provided by having care that is timely available, with well-staffed and well-distributed services and that is equitable. Each component or sub-principle of the accessible principle (well-staffed, well distributed, equitable, and timely) is discussed.

The first sub-principle is well-staffed. The New Zealand Palliative Care Strategy (Government of New Zealand, 2001[7]) emphasises the importance of sufficient palliative care staffing, the Chilean plan places emphasis on having a multi-professional team (Ministerio de Salud, 2009[8]) and Canada’s Framework on Palliative Care includes measures to increase training and other supports for health care providers (Health Canada, 2018[9]). Multi-professional teamwork in EOLC is desirable and there is a need to improve the palliative care training of health and social workers (Pulsford et al., 2013[10]), which in turn can improve quality of EOLC.

The second is that EOLC is well distributed across settings, allowing people to receive care in their preferred place. Most end-of-life care is currently provided at the hospital, which is the setting where most people across OECD countries die (OECD, 2020-2021[11]). Nevertheless, the person’s home is often reported to be the preferred place of death (Agenzia nazionale per i serivzi sanitari regionali, 2010[12]; CIHI, 2018[13]; Calanzani and al., 2017[14]; Gomes and al, 2012[15]). Well-distributed end-of-life care would allow people to access services in the setting of their preference.

The third sub-principle is equitable, an issue highlighted in the Framework of Palliative Care in Canada (Health Canada, 2018[9]). The sub-principle focuses on people having access to care irrespective of their diagnosis, social group, socio-economic background, or proximity to death. Currently, service availability and access are not uniform even within countries, with substantial inequalities in access to EOLC services. There are barriers to high quality EOLC because of socio-economic background, as people with limited economic resources often have poorer health and more complex needs. There are also geographical barriers with certain areas having less availability of services. Such inequalities compound over the life-course and are likely to be more acute at the end of life. Across North America, Europe, Australia and Asia, people living in the most deprived neighbourhoods were more likely to receive acute hospital-based care in the last three months of life, and to not receive specialist palliative care (Davies et al., 2019[16]).

The fourth sub-principle is that EOLC resources and services are available in a timely manner. It refers to the existence of services that individuals can utilise at the right time for them and adapted to their circumstances. Timely palliative care may be associated with improved quality of life and EOLC (Murray et al., 2005[17]). Additionally, due to limited care infrastructure, as well as some individuals having limited care needs around the time of diagnosis, focus is placed on what the right level of intervention and the right time is for the individual (Hui et al., 2018[18]; Hirvonen et al., 2020[19]).

While two-thirds of people dying would need palliative care, they do not always receive it. Only half of the palliative care needs are actually satisfied in OECD countries. Estimates suggest that around 7 million people would need palliative care across OECD countries in 2019 and the number is even higher when considering the relatives of the dying people, who would also benefit from support.

People who require end-of-life care have different underlying conditions which can influence the timing and duration of needs. To understand this aspect, the idea of “trajectories of dying” were first articulated in the late 1990s and map the course of decline, or the path the illness takes toward death and the speed with which it progresses. Four main trajectories of death have been identified in the literature: i) sudden death; ii) terminal illness; iii) organ failure; and iv) frailty (Lunney, Lynn and Hogan, 2002[20]) (see Figure 2.1). These are defined as follows:

  • Sudden deaths include mainly accidents and other external causes, usually with almost no evidence of functional decline and relatively low health care expenditure growth.

  • Terminal illness commonly refers to cancers, which have very little decline a year before death, and a drastic decline about 3 months prior to death, with costs rising particularly in the last 6 months.

  • Organ failure includes heart failure, Chronic Obstructive Pulmonary Disease, and liver failure, often have a fluctuating pattern of decline in the years prior to death, and a drastic decline in the last 3 months of life. Costs related to organ failure are higher on average than the other trajectories in the 2 years prior to death, gradually increasing in the last 6 months.

  • Frailty encompasses diseases such as dementia, and Parkinson’s, which have involved a gradual decline in condition in time. Frailty normally involves relatively low expenditure that gradually increase through the years closest to death, except for dementia.

Nearly 90% of all deaths occurring in OECD countries between 2001 and 2019 are caused by organ failure, frailty or terminal illnesses, for which individuals might benefit from EOLC. Classifying mortality statistics according to the trajectories, Figure 2.2 shows that in 2019, 41% of all deaths were caused by organ failure (which mainly includes heart diseases), 25% by terminal illnesses (which mainly includes cancer), and 21% by frailty (which mainly includes Alzheimer’s disease and other dementias).

The three main death trajectories have shown different trends over time. In 2019, despite its slightly decreasing trend, organ failure remains the biggest cause of death, accounting for 41% of all deaths. Frailty is becoming increasingly important due to population ageing. Nevertheless, part of the increase in the deaths reported as frailty can be attributed to a recent change in the coding practices for dementia and Alzheimer’s disease, which have been increasingly recognised and coded as the main cause of death (Roth et al., 2018[21]). This phenomenon arises from three factors: a growing propensity among physicians in north-western European countries to code dementia as the underlying cause of death, a change in the WHO guidance in 2001 on the choice of the underlying cause of death and two coding changes in 2011 and 2014, which increased the level of detail for coding dementia as the leading cause of death. For instance, the change in 2011 allowed coding vascular dementia as such, instead of the more general “cerebrovascular disease (unspecified)” (University of Oxford, 2016[22]). Terminal illness has remained comparatively stable, representing around 25% of all deaths in the period analysed (2001-19).

The OECD estimates that the total number of those dying and in need of palliative care amounted to almost 7 million people in 2019 (see Annex 2.A). Such estimates are based on the three trajectories discussed above (terminal illness, organ failure and frailty) and on the pain prevalence associated with those, amounting to 64% of total deaths having, on average, palliative care needs (Etkind et al., 2017[25]). More precisely, for diseases classified as organ failure the pain prevalence corresponds to 67% (meaning that 67% of all organ failure deaths live in a situation of pain as to require physical care for the management of these symptoms). This percentage is estimated to be 84% for terminal illness and 60% for dementia.

On average less than 40% of people in need of palliative or end-of-life care actually receive it (Figure 2.3). Survey data on the share of people aged 65 or older receiving palliative care before death shows nonetheless great differences across countries, ranging from around 15% in Bulgaria and Hungary to 65% in the United States and Finland of people receiving palliative care before death.

OECD estimates on the palliative care gap are aligned with what has been published for other countries. For instance, a study on the provision of palliative care in Colombia has estimated that current palliative care services are able to cover around 30% of the needs on average, with regional variation (Sánchez-Cárdenas et al., 2021[26]). In France it is estimated that 24% of people experiencing acute stroke are receiving palliative care, 23% among those with multiple sclerosis and 17% of people with CHF or dementia (Ministry of Health France, 2022[27]). Data from Ireland report that around two-thirds of people who die every year, who might benefit from end-of-life care in their last year of life, do not receive it (Irish Department of Health, Social Services and Public Safety, 2010[28]). In Portugal, the strategy for developing palliative care services estimates that the current community support palliative care teams are half of those needed to satisfy demand (Comissão Nacional de Cuidados Paliativos (CNCP), 2019[29]). In 2022-23 in Portugal there will be 10 more palliative care teams, which are estimated to cover about three-fifths of need. For the 12 OECD countries for which administrative data is available, gaps in care demonstrate that more than half a million individuals potentially in need of care did not receive services (see Annex Table 2.A.1 and Annex Table 2.A.2).

There is a large social gradient in health outcomes and this gradient is also apparent at the end of life. Lower socio-economic status is usually associated with higher rates of disability and diseases, implying more complex needs and a higher need of care at the end of life (Davies et al., 2021[30]; Davies et al., 2019[31]; Simon et al., 2016[32]; Walsh and Laudicella, 2017[33]). Previous OECD work also illustrated that those less educated are more likely to suffer from overweight and obesity and be exposed to risk factors such as smoking. These inequalities compound over the life cycle and the least well-off and the least educated have a higher risk of dying prematurely than those who face more favourable socio-economic circumstances (Michael Marmot, 2020[34]).  As a result, large inequalities in life expectancy exist by socio-economic status including education level, income, or occupational group (OECD, 2019[35]).

In addition to poorer initial health and risk factors which result in greater health needs, there are also socio-economic inequalities in health care services utilisation. Overall, it seems that people with a lower socio-economic position have increased symptom burden and higher difficulty navigating complex health care systems at the EOL but also limited formal and informal social support. As a result, they are less likely to participate in advance care planning, are substituting emergency care for elective care and are also more likely to receive intensive treatment at the end of life (Bowers et al., 2022[36]). Contrary to evidence that there is no socio-economic difference in the probability of hospital use throughout the life-course, there is a higher likelihood of using acute care among people with lower socio economic status at the end of life (Lewis et al., 2011[37]). Studies have found that people with lower socio-economic status were less likely to access formal health care services before death (Cárdenas-Turanzas et al., 2011[38]; Choo et al., 2007[39]; Mai et al., 2018[40]). A comprehensive systematic review on the way the socio-economic position influences the care people receive at the end of life has shown that lower socio-economic status is associated with higher likelihood of dying in the hospital and lower likelihood of receiving specialist palliative care in the last year of life (Davies et al., 2019[31]). More specifically, compared with people in the highest socio-economic position, people with the lowest socio-economic position were 3% more likely to die in hospital than at home or in a hospice (pooled odds ratio from 31 studies: 1·30, 95% CI 1·23-1·38) (Joanna M Davies, 2021[41]). Such inequalities in access and treatment also result in higher overall end-of-life care costs (Yu, Alavinia and Alter, 2020[42]).

Inequalities are particularly apparent with respect to palliative care services. There is evidence that people with lower education experience lower quality in end-of-life care and a shorter time between diagnosis of a life-limiting disease and death. Lower socio-economic status also seems to be correlated to higher levels of pain associated to an illness (Rowley et al., 2021[43]). Figure 2.4 shows that there is a gradient between education levels and access to EOLC, with higher education levels more likely to receive hospice or palliative care.

There are various explanations for such inequalities in health care service utilisation (OECD, 2019[35]). First, these inequalities can be driven by financial barriers to health care access and the ability to pay for care. For people on low income, health expenses due to illness can easily become an increasing and substantial fraction of their total income and end-of-life care expenses can be catastrophic (Bowers et al., 2022[36]). Studies also suggest that, despite the financial burden, financial support is not always reaching patients and families. Second, health literacy and information about health care, such as awareness of illness and about availability and efficacy of health care services, may vary across population. For instance, people with higher education were more likely to know their prognosis and choose comfort treatment and more likely to discard invasive sustaining treatment such as chemotherapy, intubation, use of mechanical ventilation and cardiopulmonary resuscitation (Bowers et al., 2022[36]).Third, availability and quality of care may also be influenced by area of residence and linked to socio-economic status. Finally, housing conditions suitable for supporting care at home might also be influenced by the same factors. Receiving palliative care services at home might not be a feasible option for some people whose house does not have the required conditions (e.g. space and safety) to host the needed equipment and to receive care safely (Rowley et al., 2021[43]).

There are also inequalities in end-of-life care by location. Evidence from the United States and the United Kingdom suggests that there can be a 20-year gap in life expectancy between more affluent and more deprived areas (Rowley et al., 2021[43]). The VOICE survey in the United Kingdom shows that 29% of people living in most deprived areas reported end-of-life care to be fair or poor, higher than among people living in least deprived areas (22%) in 2015 (ONS, 2016[44]). A systematic review on access to hospice care in Australia, Canada, New Zealand, and the United Kingdom has found that people living in more deprived areas, together with people living in rural areas are less likely to access hospice care (Tobin J, 2022[45]). In Colombia, the majority of palliative care services concentrated in the regions of Bogotá D.C. and Antioquia while the eight Colombian regions that showed the lowest development are located in jungle areas, showing a clear imbalance between rural and urban areas across the country (Sánchez-Cárdenas et al., 2021[26]). Figure 2.5 shows that in most countries people aged 65 or older living in rural areas are less likely to access palliative care before dying, compared to those in urban areas.

There are several factors that explain geographical disparities in access to end-of-life care. Location and distance to services, the number of facilities providing hospice services, the driving times required for nursing and other staff to make home visits, and access to equipment and supplies are several reasons which drive inequalities (Rainsford et al., 2017[46]). People living in remote areas and experiencing serious health issues might not be able to face long travel times to reach the closest service provider. In the United States, only 17% of rural hospitals have palliative care programs compared with 90% in cities (Center to Advance Palliative Care, 2019[47]). At the same time, home care services are less available in rural areas due to long distances, while health workers are usually less widely available in smaller and rural areas, compared to urban conglomerates (Lalani and Cai, 2022[48]; Rowley et al., 2021[43]). Further evidence also shows that people who live closer to inpatient facilities providing EOLC are more likely to die in those facilities, showing that the geographic area of residence influences where people receive care and die (Chukwusa et al., 2019[49]). People living in rural areas are thus less likely to receive palliative care and more likely to receive aggressive care at the end of life (Conlon et al., 2019[50]). In Australia, people in rural and remote areas are less likely to die at home because of lack of available options and delays in care (Handley, 2019[51]). People in less affluent areas had less access to hospice care, had less home visits, were less likely to be referred to palliative care services and might suffer from transportation difficulties (Lewis et al., 2011[37]). Primary care teams in the United Kingdom provide less out of hours palliative care in areas of high deprivation than more affluent areas (Fisher, Lasserson and Hayward, 2016[52]).

Availability of palliative care services in rural areas is related to overall shortages of physicians in rural areas. A study from the United States found that the number of physicians in a county was a significant factor in whether a hospice (or palliative care services) was located there (Campbell, Merwin and Yan, 2009[53]). Across OECD countries, the number of doctors per capita tends to be much lower in rural/remote areas and in deprived urban areas. On average across 14 OECD countries in 2019 there were 4.7 physicians per 1 000 population in urban areas, against a rate of 2.9 in rural areas (OECD, 2021[54]). Demographic change is contributing to widen territorial disparities in access to services. Rural ageing, namely larger shares of older populations living in rural areas compared to urban conglomerates, is resulting in a growing need of care, including end-of-life care. At the same time, the rural ageing also drives the lack of health care providers in rural areas, as young health care professionals are more and more likely to move towards urban areas (McEldowney, 2020[55]) (Skoufalos et al., 2017[56]; Hospice UK, 2021[57]).

Most OECD countries recognise the need to provide EOLC across various settings of care. The totality of surveyed OECD countries (26) foresees the provision of EOLC services within hospital settings and at the patients’ home, 77% in hospice and 69% in nursing homes (OECD, 2020-2021[11]). Nevertheless, this does not translate in practice into the possibility for people to choose where to receive care at the end of life and where to die. The place of death does not always align with people’s preferences on where they hope to die. Despite most people preferring to die at home, hospital is still the most common place of death in OECD countries.

Analysing people’s preferences for place of death can be challenging, since they can change over time, particularly when death becomes imminent (Gerber, Hayes and Bryant, 2019[58]; Vidal, 2015[59]) and they can be influenced by many factors such as certainty around the individual’s health status and relationship with carers. As an example, people sometimes prefer not to die at home because of the burden it places on carers (Gerber, Hayes and Bryant, 2019[58]).

Nevertheless, home is often indicated as the patients’ favourite place of death, while non-hospital health care facilities are among the least preferred settings to die (Agenzia nazionale per i serivzi sanitari regionali, 2010[12]; CIHI, 2018[13]; Calanzani and al., 2017[14]; Gomes and al, 2012[15]). While it seems that preferences for home death reduce as death nears, they do so only marginally, with most people retaining their initial intention (Vidal, 2015[59]). For example, evidence from advanced cancer patients indicates that home remains the preferred place of death in 65% of cases and that preferences barely change over time (Vidal, 2015[59]). International studies on preferences for place of death reveal that the preference for home death ranges from 51% in Portugal to 84% in the Netherlands (CIHI, 2018[13]; Calanzani and al., 2017[14]; Gomes and al, 2012[15]). Conversely, non-hospital health care facilities are the least preferred place of death in Italy, Netherlands and Spain, and the third least preferred place to die in Belgium (Flanders) (Calanzani and al., 2017[14]) and Sweden (Westerlund et al., 2018[60]).

Some gaps in access to EOLC relate to the place of care. Table 2.1 shows the number of patients receiving EOLC in different settings, including hospital, hospice, nursing homes and the patient’s home. Data is fragmented but shows that in most countries EOLC is most often received in hospitals. Differences in the way data are collected and gaps in data availability (see the notes below the table) might hamper comparisons, but evidence in the literature is in line with such result. For instance, data from Canada show that only a minority of patients who die in LTC facilities receive end-of-life care in the last year of life: among those who were expected to live less than 6 months, only 22% received palliative care in the last year of life compared to other settings (CIHI, 2018[13]).

Across OECD countries hospitals are the predominant place of death, accounting for more than 50% of deaths on average in 2019, ranging from 20% in the Netherlands to more than 70% in some countries such as Japan and Korea (Figure 2.6). The different shares of hospital deaths are driven by different factors across countries. In the Netherlands, where the share of hospital deaths is lowest, long-term care facilities and private homes play an important role, counting 36% of deaths happening at home and 35% in long-term care facilities (2017 data). Similarly, in 2018 in Switzerland, 36% of deaths took place in long-term care facilities. In Norway, the share of 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 share is growing in Korea, the United States (23% in 2001; 31% in 2018) and the United Kingdom (19% in 2006; 24% in 2018) (OECD, 2021[54]). Deaths in other facilities (e.g. hospices, nursing homes, long-term care facilities, residential care centres) have increased in Belgium, France, Ireland, Japan, and Norway. For more information about the data on place of death see Box 2.1

Between 2009 and 2019 there has been a decreasing trend, with the OECD22 average share of people dying at the hospital decreasing from 53% to 50%. In 12 of the analysed countries there was a decrease in hospital deaths, with the United Kingdom experiencing a particularly drastic change. Only six countries registered a higher share of people dying at home in 2019 in comparison to 2009. A shift towards higher shares of deaths in care homes and private homes needs to be accompanied by the change in resources to ensure quality of death. More recently, the COVID-19 crisis has also led to an increase in home and nursing home deaths in some countries, especially in the United Kingdom, but it was challenging to maintain care quality with such a sudden shift toward community settings (Thomas, 2021[61]).

The reasons for the dichotomy between preferences and actual place of death are often the lack of necessary resources for home death. Getting palliative care at home in the year before death increases the chances of dying at home. In Canada, people who received palliative care at home were 2.5 times more likely to die at home compared to Canadians receiving regular home care. Many palliative care service providers experience under resourcing for both staff and equipment, especially in rural and remote areas. Several other barriers to receiving palliative care at home or in nursing home can influence the probability of hospital deaths: a lack of afterhours support, incentives for general practitioners to provide home visits, and a lack of co-ordination between hospitals and community-based services (Handley, 2019[51]). Beyond resources, studies have pointed out that place of death might be misaligned because unawareness or changing preferences. Indeed, family members might not be aware of people’s preferences and that people might not want to impose a high burden on their family caregivers.

End-of-life care is often subject to late identification of needs in their disease trajectory. Clinical predictions of death are not very accurate and prognostic uncertainty can be a barrier to timely assessment of palliative care needs. Studies have found that less than 10% of those who end up dying within the year have an annual mortality probability above 50% (Einav et al., 2018[62]). With a growing population dying from chronic progressive diseases following a less predictable trajectory, identifying care needs is becoming even more challenging. Most screening tools2 use prediction of death and/or deterioration as a proxy for the identification of people who are likely to have unmet palliative care needs but usually perform poorly in prognosis and accuracy. For instance, recent evaluations of the “Surprise Question” (i.e. Would you be surprised if this patient died in the next 12 months?), have shown that it has variable accuracy as a screening tool, and as such, it should not be used in isolation as an identification tool (White et al., 2017[63]).

Referral to services and specialists is also happening at a late stage in the process of dying. Palliative care is often only offered late in the course of disease after curative measures have been exhausted. A nationwide study in the United Kingdom showed that the median time between referral for hospice palliative care and death was 48 days and approximately 40% of referrals were made within 30 days of death. Average times between referral and death was particularly short for people with stroke and dementia, at around nine days. This is in contradiction with international guidelines for cancer care, for instance, where the recommendations are for a referral within eight weeks of diagnosis and the guidance to have individualised plans for all patients (NIHR Dissemination Centre, 2018[64]). Part of the reasons for delays in referrals might be related to difficulties for doctors to make adequate prognosis on death and lack of adequate diagnostic for end-of-life care service, as discussed previously, but also to stigma from families and patients, and to supply constraints (insufficient specialists), (NIHR Dissemination Centre, 2018[64]).

Even when people have been referred, there are still delays in the access to the first consultation. Countries with available data report median waiting time between referral and first contact to vary between one and 12 days in 2019. In Slovenia the median waiting time is one or two days, in Canada3 three days, in Iceland4 it is one day for palliative care consulting team, 4.6 for palliative care unit and 12 days for palliative home care (OECD, 2020-2021[11]). In Canada, in 2016-17 to be discharged from acute care to non-acute care to receive palliative care, patients wait a median of nine days. Nearly half of them (47%) die while they are waiting, while some of them are transferred to another acute care facility (4%) or go home without support (2%) (CIHI, 2018[13]).

As a result, despite evidence that early integration of specialist palliative care can improve quality of life, the duration of palliative care before death for patients with life-limiting illness is much shorter than what is recommended and supported by evidence. Previous studies suggest that providing at least three to four months of palliative care provides maximum benefit. In contrast, across countries, the median number of days was 29 days and there is wide variation in the duration of palliative care received before death across countries, ranging from 9 days in Australia to 69 days in Canada (Jordan et al., 2020[65]). OECD analysis found that more than half of people receive palliative care services only in the last month of life. The share of people receiving palliative care services for less than a month corresponds to 48% in Lithuania, 73% in Denmark and 80% in Israel. Furthermore, no-one receives palliative care for more than one year in Israel and Denmark (Figure 2.7).

This section describes examples of policies implemented across countries to increase the availability of adequate staff levels with end-of-life care knowledge. Countries have started to develop workforce planning and increasing end-of-life care training for specialists, but working conditions hamper the attractiveness of the sector. In addition, countries are working on new models of care to ensure adequate general palliative care knowledge by having sufficient staff in all settings and designing strategies to reach more vulnerable populations for whom there are more gaps in access. Best practices are also emerging in early identification of needs and early referral to adequate services, ensuring timely access to care.

In the past 15 years, specialised service provision increased throughout OECD countries, yet it still seems to fall short in several OECD countries. Central and Eastern European countries showed significant improvement in home care teams and inpatient services, while Western European countries showed significant improvement in hospital support and home care teams (Arias-Casais et al., 2020[67]). The European Association for Palliative Care recommends 0.5 hospital support teams (HST) and 0.5 inpatient palliative care services (IPC) per 100 000 inhabitants and 1 home care team (HCT) per 100 000 inhabitants, but no European country meets all these three goals (Figure 2.8). Austria, Ireland, Luxembourg, and Belgium are among the countries with the most teams available, while Greece, Republic of Türkiye and the Slovak Republic stand on the lower end. In 2022, the Portuguese national health care system included more hospital palliative care teams than home palliative care teams (45 vs 33), and there are also 27 palliative care units in hospital (237 beds) and 14 palliative community units (OECD, 2020-2021[11]).

The skill-mix in palliative care differs also widely across countries, signalling different ways of organising the delivery of palliative care and the distribution of tasks among professionals. Countries record wide differences in the number of specialised palliative care doctors and nurses. The number of specialised palliative care doctors per 1 000 deaths ranges between 0.20 in Japan to 4.11 in Luxembourg, while the number of specialised nurses per 1 000 deaths varies from 0.89 in Iceland to 22.67 in Australia (Table 2.2).

Workforce development and future workforce planning are important avenues to address shortages and avoid future gaps. Three-quarters of OECD countries (18 of 24 countries providing data) have developed specialisations in palliative care medicine that are available and officially recognised for physicians but the numbers being trained and choosing that speciality might still be insufficient in many countries. Research from the United States shows that maintaining the status quo in terms of training is unlikely to provide enough workers to keep up with population ageing and concerns over future oversupply are unlikely (Kamal et al., 2019[68]). Canadian data highlights that given population projections on the number of dying persons and the type of diseases, in Nova Scotia, a 64% increase of specialist palliative care teams including nurses, physicians and social workers would be needed to address current gaps and 13% more would be needed in the next 20 years (Taghavi and al., 2021[69]). As for other medical professions, countries need to train enough to meet future needs and it is a fine balance to expand training places to address shortages while preventing a risk of oversupply in the future.

Some countries are thus increasing the availability of training to become palliative care specialists. In 2021 Italy has established the first school of medical specialisation in palliative care (Decree of 28 September 2021). Beyond increasing graduates, one possible avenue to encourage staying in the sector is to fund the development of physician-leaders through palliative care academic career development awards (Kamal et al., 2019[68]; Lupu et al., 2018[70]). The Palliative Care and Hospice Education and Training Act, which was reintroduced in the US House of Representatives in 2022 would fund the development of physician-leaders through palliative care academic career development awards and would provide salary support for early-career physicians to develop clinical, educational, and research expertise and grow into leadership roles (Kamal et al., 2019[68]).

To increase access more widely, it would also be important to optimise the scope of practice of different health care providers, with a view to make the best use of their qualifications and skills. Palliative care training is more embedded within nursing school education, with nearly three-fifths (58%) of responding OECD countries (14 of 24) reporting that undergraduate nursing school curricula includes mandatory palliative care training, and a further 5 (21%) reporting that palliative care training in undergraduate nursing programs is mandatory in at least some regions of the country (Figure 2.9). Nurses constitute thus a potential resource to expand access to palliative care.

Countries can reduce barriers in the scope of practice and ensure that innovations in advanced practice and nurse-led models of palliative care can effectively bridge gaps in health care service delivery. Further training of nurses through additional funding might be necessary to improve their knowledge base (Rosa et al., 2022[71]). The European Association of Palliative Care (EAPC), for instance, recommends three educational levels for nurses: basic education in palliative care for all nursing professionals, intermediary education for nursing professionals who frequently care for patients at the end of life (adults and children), and specialised education for nursing professionals. Korea has general hospice palliative care nurses and hospice advance practice nurses trained as master’s-level advanced nursing professionals. In Australia, there is positive evidence of nurse-practitioner-led models in palliative care: an evaluation of a pilot project whereby palliative care trained nurse practitioner working together with GPs in rural setting resulted in early intervention of palliative care and hospital avoidance (Mitchell et al., 2016[72]). The Australian College of Nursing has designed an implementation toolkit for establishing such nurse-led models (ACN, 2020[73]). Since 2013 Belgium is incentivising the use of hospital nurses with a palliative care qualification who are working in palliative care by providing them with a bonus (Service Public Federal Belgum, 2017[74]).

Adequate knowledge and staffing of different health professionals might also be important to provide multidisciplinary specialised care. Currently, basic training in palliative and end-of-life care is far from universal. Across 23 responding OECD countries, training certificates were most likely to be required for doctors (10 of 23 countries) or nurses (9 of 23 countries) working in the field of palliative or end-of-life care, with far fewer countries – just four – reporting that training requirements existed for other health and social care workers providing palliative and end-of-life services, including social workers and personal care workers (Figure 2.10).

Supporting specialist palliative care doctors and nurses with other staff is increasingly recognised in strategies and plans. For instance, Ireland in its National strategy has recommended a review of staffing needs for health care assistants to meet certain ratios. It is also emphasised that as palliative care is provided early in the disease trajectory, giving additional importance to rehabilitative palliative care and adequate staffing of professionals will be needed. The Irish Report of the National Advisory Committee on Palliative Care has thus specific recommendations on disciplines to ensure adequate mix of physiotherapists, social workers, speech therapists and dietitians, as well as pastoral care and not forgetting administrative support (HSE, 2019[76]). In France, palliative care specialisations will be developed for higher levels of education and funding will be provided for the roles of specialised “palliative medicine assistants”. Palliative care courses included at all levels of education will also foresee practical training through internships (Ministry of Health France, 2022[27]). In Australia, New South Wales has committed to invest AUD 746 million over 5 years, on top of the yearly AUD 300 million budget for palliative care, starting from 2022. The investment will employ 600 new nurses, allied health professionals, doctors, and support staff for palliative care, increase hospital capacity, improve access to pain management, strengthen community care, among other measures (NSW government, 2022[77]).

Working conditions in end-of-life care might be challenging for professionals. Mental distress is common among health care professionals working in end-of-life care (Coleman, Sanderson-Thomas and Walshe, 2021[78]). Surveys from several countries show that stress and burnout are high among palliative care staff. For instance, in the United States, burnout was reported by approximately one-third of physicians, nurses, and social workers (Kamal et al., 2019[68]; Wang et al., 2020[79]). In Canada, 38.2% of respondents reported a high degree of burnout due to high emotional exhaustion and high depersonalisation (Wang et al., 2020[79]). Furthermore, health care professionals report not feeling competent to provide spiritual support (O’Brien et al., 2018[80]). Mental issues among palliative care workers become even more relevant during emergencies, such as a pandemic. During such events, health care workers have reported posttraumatic disorders, sleep disturbances, anxiety, and depression, among other symptoms. Mental ill-health during pandemics arises from the mix of difficult situations faced daily on the job, together with the societal fear of contracting the infection form health care workers (Porter et al., 2021[81]).

Certain interventions to support staff in stress-relief can be helpful and include training in mind-body skills and cognitive strategies to help reduce negative self-talk (Perez et al., 2015[82]). A Stress Management and Resiliency Training (SMART) programme has been shown to increase resiliency and reduce stress among palliative care physicians in the United States (University of Vermont - medical center, 2018[83]).  Australia, Canada, Ireland, New Zealand, the United Kingdom, and the United States offer health care professionals the Schwartz Rounds. The latter consist of sessions where health care professionals can meet to exchange experiences and feelings related to their job. Participants have reported a decrease in the stress and isolation, more feelings of compassion towards patients and better teamwork (The Schwartz Center, 2022[84]).

Beyond the stress of dealing with patients, time constraints and workload are also cited among the deterrents and possible stressors for palliative care staff. Countries can take a range of other workforce measures for retaining workers in palliative care (Mills and Ven, 2019[85]). In this sense, quality of the management of everyday organisational life and the organisation’s approach can have a strong impact on stress and the feeling of support for professionals. Hospice UK recommends effective leadership, a participatory culture and good line management and supervision of staff (Hospice UK, 2015[86]). More flexibility and autonomy in managing the schedule appear to be important to ensure work-life balance: studies report that workers in hospice suffer from frequent changes in scheduling (Lehto et al., 2020[87]). Telehealth is opening avenues for improving such work-life balance while staff found them effective and patients report similar quality of care outcomes (Dolan et al., 2021[88]). Finally, given overall level of health care shortages, ensuring sufficient compensation in relation to other specialities might also help to attract and retain workers. 

Despite the importance of training in palliative and end-of-life care, both the availability of on-the-job training programs and their quality still stand to be improved in many cases. While most countries (20 of 24, 83%) report that on-the-job training in end-of-life and palliative care is available (Figure 2.11), less than one-third of countries (7 of 24, 29%) reported that such training is mandatory for staff working in the end-of-life or palliative care fields. A national survey of oncology fellows in the United States found that even where training in palliative care was available, the quality of training in palliative care was poorer than the broader training in cancer care, particularly related to improving communication skills, providing psychosocial care, and pain management in palliative care (Thomas et al., 2015[89]).

Some countries have included the development and improvement of on-the-job training in their national plans. For instance, the French Ministry of Health included in the 2021-24 national plan the development of on-the-job continuous learning for all health care professionals who wish to improve their skills and knowledge on end-of-life care. The national plan foresees actions aiming at evaluating the quality of training on end-of-life care, including indicators on the quality of training among the indicators of care quality evaluation, develop continuous learning for all professionals working in end-of-life care, and foresee surveys to evaluate the satisfaction of trainees (Ministry of Health France, 2022[27]).

In some countries there are specialised training centres providing training and support on end-of-life care. In England (United Kingdom), to improve the quality of on-the-job end of life care training, Skills for Care provides technical and financial support to employers in the care and social sectors. The Government of England (United Kingdom) has established the Skills for Care in 2001, as a strategic workforce development and planning body, for the social and care sector. Skills for Care provides employers with materials to train their workforce, including written and video support. Furthermore, Skills for Care has a free e-learning programme offering 150 modules on end-of-life care (e-ELCA, End-Of-Life-Care for All). It also provides pathways to support workers caring for people at the end of their life (Skills for care, 2022[90]). Similarly, the Center to Advance Palliative Care (CAPC) was established in the United States in 1999 to improve the care and support provided to people suffering from serious illnesses and their families. The centre provides a plethora of material, spanning from toolkits to courses, webinars, virtual office hours where people can exchange thoughts and information. All health care providers can become member organisations and access to a variety of available tools.

Certain strategies are also put in place to increase the accessibility of training. The Lincolnshire, England (United Kingdom) Implemented a new training and education programme that mixes existing courses and new initiatives on end-of-life care. The programme uses community-based digital tools (e.g. video conferencing facilities) to facilitate the access to the training and education, reducing travel time and increasing the frequency of training and education (NHS UK, 2021[91]). Making information regarding training easily available also helps students, workers and volunteers navigate the training opportunities available. Australia has several national and local initiatives to provide training on end-of-life care. The initiatives span from online training to short workshops, to vocational training with certifications. Furthermore, the trainings target a large audience, covering all health care professionals, students, informal carers, and volunteers. The Australian Government Department of Health funds the Program of Experience in the Palliative Approach (PEPA). PEPA aims at providing free workshops on palliative care for clinical workforce, as well as supporting health care providers to integrate palliative care training within the workplace (PEPA, 2022[92]). Furthermore, the Australian End of Life Directions for Aged Care (ELDAC) provides resources (e.g. toolkits, guidelines, support for service development) to support Long-Term Care workers providing end of life care to older Australians (ELDAC, 2022[93]). Victoria’s department of health published a palliative care education audit, listing all trainings available at the national level (Department of Health Victoria, 2018[94]). Sweden has also improved access to training by providing online training on palliative care at the end of life. The training is free of charge and available to all health care workers and interested stakeholders. The Bethania Foundation provides such inter-professional education and skills development in palliative care and existential support. The training is based on national guidelines, particularly the National knowledge support for good palliative care at the end of life published in 2013 by the Swedish National Board of Health and Welfare. The latter published guidance, recommendations, terms, definitions, and indicators on palliative care. In Portugal, the National Commission for Palliative Care (CNCP) is developing basic palliative care training for health care professionals, which will be made available online nation-wide.

To expand access at home and in community-care settings, more efforts need to target primary care professionals. Inclusion of palliative care at the primary care level in undergraduate institutions varies greatly from country-to-country. Nearly one-third (7 of 25) of OECD countries reported that undergraduate medical training does not include a palliative care component, with fewer than half responding OECD countries (11 of 25, 44%) reporting that palliative care training is mandatory nationwide, and a further 24% reporting that palliative care training requirements vary based on region (Figure 2.12). Generally, residency programs for family physicians incorporates some palliative care training in 22 countries (65%), and 17 countries (50%) report having these components included in the training for general physicians (GPs). In Ireland only 1% of GPs/primary care doctors had received palliative care training in 2020, while in Belgium only 7% in 2019, an increase compared to the 2% in 2000. Luxembourg reported a higher share, with 28% in 2009 (OECD, 2020-2021[11]). Such insufficient training prevents the early identification of needs and the provision of care. In Europe, only 12 countries reported primary care teams identifying more than 20% of their patients for palliative care before they died (across all diseases).

Certain countries are making efforts to ensure core competencies in palliative care are achieved by every medical school graduate. In France, the end-of-life care plan 2021-24 aims at improving the number of health care professionals with palliative care training. To do so, the plan foresees the development of palliative care courses in university curricula and the inclusion of palliative care training in all health care professionals’ education paths (Ministry of Health France, 2022[27]). The French national plan 2021-24 sets the objectives of including palliative care in all health sectors’ degrees, to ensure an inter-professional and holistic approach to the care of people at the end of life. Portugal has developed a palliative care network (CNCP) that involves primary health care, hospital health care and integrated continuous care. The CNCP 2017-18 implementation report of the strategic plan for the development of palliative care reported that it is imperative that all health professionals have basic training in palliative care. Moreover, professionals working in services with a high prevalence of elderly people or with life threatening diseases must have intermediate level palliative care training. This requirement aims at providing all people with serious and/or life-threatening illnesses with access to effective end-of-life care, regardless of their diagnosis, age, or place of care (CNCP, 2017[95]).

Building general expertise in palliative care at primary level should not undermine the importance of having a well-co-ordinated mechanism with specialists, in case of needs for additional expertise. In the Netherlands, the national policy states that palliative care should principally be provided in the primary care setting with general practitioners and district nurses playing a leading role in providing palliative care at home. At the same time, they can refer to specialist palliative care in case of complex problems. According to a study, most general practitioners reported that they sometimes or often involved palliative home care teams (99%), hospices (94%), and palliative care consultation services (93%) while most district nurses reported sometimes or often involving volunteers (90%), hospices (88%), and spiritual caregivers (80%) (Koper, Pasman and Onwuteaka-Philipsen, 2018[96]). In Australia, the Australian Greater Choice for at Home Palliative Care Measure (GCfAHPC) also aims to improve access to safe quality palliative care at home to reduce unnecessary hospitalisations and ensure continuous improvement of services. The measure was piloted in 2017-18 in 11 primary health care networks and expanded to 31 networks from 2021-22.

Several countries have developed networks to ensure different expertise on palliative care and the co-ordination across the levels. New Zealand decided to create regional managed clinical networks (MCNs) to plan and deliver services based on their region’s needs. The idea is that such networks are linked groups of health professionals and organisations from primary, secondary, and tertiary care working in a co-ordinated manner, and the goal was to make better use of scarce specialist expertise and prevent duplication of effort and resources. Such networks build on the evidence that well-trained primary care teams supported by specialist palliative care can successfully care for most of the palliative care need in their region. Ireland is working on a model of palliative care where hospital, community, primary care, and specialist palliative care providers are supported to work together to provide an integrated care. Care can be provided for those without complex needs by usual services with indirect support from specialists. In this sense, one important recommendation to promote wide access is that consultants for specialised services are expanded and that they divide their time between hospitals and community services (HSE, 2019[76]).

One important challenge for the expansion of access to home care services is ensuring out-of-hours care such as at night and weekends. Developing the use of telehealth and telephone services appears to be essential for this. In Germany, since 2007, palliative care should be available 24 hours a day. To ensure this, a home team is prescribed to a patient, is integrated into already existing health care structures, and provided by GPs, nurses and others if needed. In addition to care, specialist palliative home care physicians keep stock of and may dispense opioids for patients under their care during out-of-office hours in emergency situations. The Australian After-hours Palliative Care Framework, which is based in Victoria, identifies key elements for out-of-hours models and include the importance of advance care planning, good information systems and a focus on increasing symptom management and education of clients and families/informal carers (Victoria State Government, 2012[97]). The model relies on telephone advice to carers and families primarily about symptom management and uses telephone triage to decide if a nursing visit is necessary based on a risk assessment and specific triggers (Health Research Board, 2019[98]). In Canada, the provinces of Nova Scotia and Alberta have launched programs to improve the availability of palliative care services at home. The programs foresee the training of paramedics to deliver care at home for the management of physical symptoms as well as social support for the patients and their families. In Nova Scotia, the programme reduced avoidable hospital visits by 55%, while in Alberta 89% of patients were treated at home rather than being admitted to emergency rooms and 94% of relatives reported that the patients received care in their preferred location (CIHI, 2018[13]). The programme has subsequently been expanded across Canada (Healthcare Excellence Canada, 2022[99]). Some countries also provide emergency medication kits at home to allow for symptom management 24 hours a day. In Luxembourg, during the pandemic people dying at home or in nursing homes had emergency access to a medication kit containing morphine and other end of life medication. They could also have emergency access to oxygen therapy at home and in nursing homes, even at night and during the weekends.

Palliative care knowledge among staff in long-term care should also be improved. Three-quarters of countries (21 out of the 28 reporting European countries) do not reach the 40% threshold in terms of staff´s palliative care training (Arias-Casais et al., 2019[100]) (see Table 2.3). Given the high share of people dying in nursing homes in some countries, it is important to improve expertise of the staff in this topic or ensure appropriate support to avoid referrals to hospitals. Some countries have started this change, for instance the Australian state and territory governments have funded the Comprehensive Palliative Care in Aged Care (CPCiAC) measure. CPCiAC aims at facilitating the development of innovative models to improve palliative and end-of-life service provision and care co-ordination, for older people living in residential aged care, by increasing the availability of palliative care. In Austria, the project “Hospice Culture and Palliative Care in Old People’s and Nursing Homes (HPCPH)” aims at improving access to palliative care for older people through the increase in training provision to all employees in older people’s homes and nursing homes. Furthermore, since early 2022 Austria passed the Hospice and Palliative Fund Act, which includes grants to the regions for modular hospice and palliative care offers. The fund intends to guarantee the needs-based and affordable hospice and palliative care services. The federal government, the states and the social insurance will also provide special-purpose grants. Starting from 2025, the fund is also planned to increase annually. At the same time, initiatives to implement such knowledge in nursing homes have been scarce and not always evaluated. Results from evaluations have sometimes been disappointing and the staff shortages and high staff turnover make it challenging to provide good care (Lamppu and Pitkala, 2021[101]). Evaluations of interventions show limited impact on quality of life for residents and on unnecessary hospitalisations (Van den Block et al., 2020[102]).

Some recent initiatives to improve training among long-term care staff appear promising, even if not yet widely implemented. In Australia, the ELDAC has a toolkit for staff in nursing homes to help them in end-of-life care (ELDAC, 2022[103]). Recently, in England, an innovative model of training was piloted and rolled out across care homes using a team from hospital including a palliative care consultant, a palliative care nurse consultant, a palliative care matron and three clinical nurse specialists to train and support nursing home staff. Training included recognising dying, advance care planning (ACP), co-ordination of care, symptom control, and bereavement care. In addition to education and training, the programme included clinical rounds to identify people who could be approaching a terminal phase, advice and guidance, communication, and care co-ordination. Nursing home residents are offered an electronic end-of-life care plan and results showed that this resulted in a high number of people (85%) dying in their recorded preferred place (EJPC, 2020[104]). In Spain, as part of the NUHELP programme, a selected group of nurses, occupational therapists, psychologists, social workers, physical therapists, and physicians working in nursing homes received basic palliative training. The analysis of the effectiveness of training showed improved staff knowledge, improved use of early assessment of needs and advance care planning and early interventions for relatives with respect to grieving (Mota-Romero et al., 2021[105]). A review of interventions points to the importance of having a multi-faceted approach to improve palliative care in nursing homes, including 1) the addition of an external mentor to facilitate training, 2) the possibility of having an external expert nurse or hospice consultation, 3) the development of an internal champion or champion team, and 4) regular debriefing and case conferencing (Kaasalainen et al., 2019[106]).

Due to inequalities in access, end-of-life care experiences differ across socio-economic levels and geographical areas. Countries are putting in place some measures to tackle access inequalities, but further efforts would be beneficial.

Some of the existing policies designed to improve the population’s knowledge around EOLC might not fit well with the needs and opportunities of people with lower socio-economic status. For instance, people with long working hours and care responsibilities might find it particularly difficult to balance personal and professional duties and might not be able to attend “death café” and workshops or webinars on the end-of-life care opportunities. Furthermore, people who hardly make ends meet might perceive short-term issues as more urgent to address than looking forward to future care preferences. The concepts of advance care planning and living wills are likely might not be the priority for some people. Finally, the development of compassionate communities, which represent a valuable way of providing psychosocial support at the end of life, assumes the existence, in the community, of volunteers who have the time and means to dedicate to care and support. Such an assumption might not necessarily hold in more deprived areas.

To address the issues related to the socio-economic inequalities in accessing end of life care service, policy makers must understand needs and barriers to access among groups. Involving representatives with lower socio-economic background in conversations to guide policy making and, in research on EOLC could be a way to tailor policy making on people’s needs (Rowley et al., 2021[43]). Community-based participatory action research is a research method that serves this scope, with existing evidence showing that it improves health and well-being in the communities and reduces disparities (Salimi Y, 2012[107]). In community-based participatory action research, communities are involved in a co-production process, in some or all steps of the research project. Engagement and outreach are also important components of providing information to some groups. Establishing compassionate communities can in some cases act as contact points between vulnerable people and the health care sector. For instance, in 2018 Plymouth (United Kingdom) established the End-of-life Compassionate City Network. About 90 individuals and organisations participate to the network to review end-of-life care policies and guidelines in collaboration with schools, colleges, workspaces, trade unions, worship places, care providers, museums, and art galleries. Among its activities, the network gets in touch with hostels and shelters for homeless people to reach vulnerable people and provide them with information on end-of-life care possibilities and guidance on how to receive the most adequate end-of-life care in line with their wishes (Transform Integrated Community Care, 2021[108]).

One-third of the OECD countries that participated to the survey does not have policies to ensure equity in the access to EOLC. Around half of the countries have such policies at the national level and only 8% at the subnational level (Figure 2.13).

In some of the countries where such policies exist, policies are broad and do not define concrete actions but are rather focusing on the principle of non-discrimination. In Latvia, policies to ensure equity only consist of a law on the right of patients, which prohibits any differential treatment based on a person’s race, ethnic origin, skin colour, gender, age, disability, state of health, religious, political or other persuasion, national or social origin, property or marital status or other circumstances (OECD, 2020-2021[11]). While people must not be treated differently based on their characteristics, it is also crucial that policies consider all the characteristics that differentiate people living in the community.

A number of countries (Austria, Denmark, Germany, Luxembourg, Norway and Sweden) set ceiling for co-payments (OECD, 2019[35]), while in other countries, detailed and effective policies to improve access to end-of-life care exist at the sub-national level, but they are not widespread within the country. The Care Quality Commission in England (United Kingdom) collected examples of good practices to provide equitable end-of-life care for everyone among English care providers. One care provider created a charity to support homeless people. The charity covered the cost of funerals and memorials for homeless people, as well as the cost of the last wishes of patients at the end of life (e.g. covering the cost of one day trip to the sea for a dying homeless person). Furthermore, the Manchester’s homeless health inclusion pathway (MPath) was established in 2013 to ensure good care for homeless people at the end of life and reduce emergency admissions at the end of life. It entails the “acute hospital rounds”, primary care follow-up and community follow-up and support. During the acute hospital rounds, GPs regularly visit the homeless patients in hospital to identify those who are reaching the end of life and to facilitate their discharge. The primary care follow-up provides the full range of specialist care services, while the community follow up and support aims at supporting homeless people in the community with issues such as housing, benefits, health care access, with the aim of avoiding repeated emergency admissions. After six months of pilot MPath implementation, the MPath reduced the admissions to emergency care and improved the engagement with primary care services among homeless people (MPath, 2013[109]).The NHS Fast-track Funding has the scope of ensuring that people whose health is deteriorating quickly can receive the appropriate care they need in a short time and free of charge. The Fast-track Funding consist of the possibility to undergo a health assessment and to obtain access to the appropriate care package within 48 hours (NHS, 2021[110]).

Several countries are testing models to improve the provision of end-of-life care in rural areas. In England (United Kingdom), the Northwest End of Life Care Model provides guidance for the assessment and planning of care for patients living in the Northwest of the country and reaching the end of life. The model identifies five phases of the illness and designs key practices to provide adequate care in each of the identified phases (NHS, 2015[111]). Australia adapted the NHS Northwest End of Life Care Model to the Far West New South Wales, an Australian rural area where 12% of the population is Aboriginal or Torres Strait Islander. The model’s assessment showed that the model improved care outcomes and communication for people at the end of life, their families, and carers, as well as integration and collaboration among care providers. To further develop the model, Australia is currently working on the development of shared-care patient records and an electronic resource centre (Wenham, Cumming and Saurman, 2020[112]). Furthermore, Australia also implemented a nurse-practitioner-led models in palliative care in rural settings. An evaluation of this model has shown early intervention of palliative care and hospital avoidance (Mitchell et al., 2016[72]). Similarly, in Canada an intervention with a nurse co-ordinator, who is supported by a community-based clinical team that includes a general practitioner and nurse practitioner who have additional palliative training, showed that it improved quality of care. The major focus of the nurse co-ordinator was on supporting and teaching about chronic life-limiting disease management and the attending physical symptoms (Rowley et al., 2021[43]). Certain countries are also testing the use of telehealth options to reach people in rural areas. Palliative care services delivered via telehealth are generally showing promise as models of care. In the United States, in California, some providers are using a blend of home-based and virtual care with an initial in-person visit followed by virtual ones using videoconferencing (Center to Advance Palliative Care, 2019[47]).

Systematic symptom screening and registration appears to be an avenue for improving timely identification and assessment. Studies point to the importance of moving away from prognostication and focus on assessment needs to identify the palliative care phase. The European Association for Palliative Care (EAPC) recommended that clinical predictions of survival should not be used alone but in conjunction with other prognostic factors (Maltoni et al., 2005[113]). The screening tool should be based not solely on predicting mortality and deterioration, but rather on symptoms and on anticipating the evolving needs of patients. Evaluation studies of screening tools to systematically record symptoms, such as the Edmonton Symptom Assessment System (ESAS) self-assessment tool, shows that it increases the likelihood of discovering symptoms that might otherwise be overlooked (Vigstad, Clancy and Broderstad, 2018[114]). Initial trials of the use of such screening mechanisms show positive results. The STEP method (Symptom screening with Targeted Early Palliative care) systematically identifies patients with the greatest need, using symptom screening at every outpatient visit, with triage and targeted referral to palliative care. It shows that such method distinguishes between patients who remain stable without early palliative care and those who benefit from targeted early palliative care (Zimmermann et al., 2021[115]). Automated tools such as the “Risk Evaluation for Support: Prediction for Elder-life in the Community Tool” (RESPECT) and the “Hospital-Patient One-Year Mortality Risk (HOMR) which incorporate electronic prognostic algorithms appear to be effective at providing information about survival and anticipating future care needs and could be more widely used (RESPECT - project big life, 2022[116]; van Walraven et al., 2015[117]).

Some OECD countries have set up successful programmes to allow early identification of needs. In Canada, a partnership between the Central West Palliative Care Network and the local health integration network (LHIN) in the province of Ontario developed a programme to allow earlier identification of patients with palliative care needs. The programme consisted in the design of the Early Identification and Prognostic Indicator Guide, which helps care providers to identify palliative care needs among patients. The project successfully reduced hospital admissions and readmissions (-40%), increased the number of patients with palliative care needs dying at home, and improved the overall end of life experience for patients and families (CIHI, 2018[13]). In Italy, Fondazione G. Berlucchi and Fondazione Floriani developed the “ARIANNA” project, an observational study on a model of early identification of patients with palliative care needs through the integration between primary care and Italian home palliative care units. The study lasted 18 months, between 2014 and 2015, and showed successful results, with 70% of patients receiving adequate palliative care and dying at home (Arianna Working Group, 2018[118]). In the United Kingdom (Northern Ireland), there are local arrangements to ensure timely access to EOLC services, which are linked to regional KPI monitoring (OECD, 2020-2021[11]). In the United States, the Sharp Healthcare system teaches professionals timely identification of end-of-life care needs using “evidence-based prognostication” (Commonwealth Fund, 2022[119]).

Improving the referral process might also contribute to more timely access. In 24 out of 26 countries that responded to the survey (92%), access to EOLC services is available through referral of a GP or a specialist. Emergency department referral and referral through digital health services are available in respectively in 69% and 31% of countries, while no OECD country allows access to EOLC without referral (Figure 2.14).

Several countries have good examples of successful changes in the referral stage. In Ireland all referrals need to be triaged within 24 hours to determine the urgency of need. Patients then receive the services in an appropriate time span according to the level of urgency. The regulation does not include a defined timeline between referral and the receipt of actual care (OECD, 2020-2021[11]). Results of systematic symptom screening can be used to identify patients who meet standardised referral criteria to initiate timely access to palliative care. For instance, in the case of cancer, international experts reached a consensus in the list of criteria for referral of patients with advanced cancer at secondary or tertiary care hospitals to outpatient palliative care and there are standardised criteria to trigger automatic referral (Hui et al., 2017[120])

Mechanisms to ensure that access to end-of-life care is timely are scarce. Countries very rarely monitor the time that is required to access EOLC after receiving referral. Only 7 of the responding countries5 (29%) have national programmes/policies to monitor how long it takes for people with a prescription for EOLC to access such services. The lack of policies and programs suggesting what is the preferable time for patients to access the services also hampers monitoring timely access. Only Ireland, Italy, and Norway (15%) provide national indication of such timing (Figure 2.15).

To improve timely access, it might be interesting to apply measures from other areas of health care. For instance, OECD countries have implemented a range of policy measures to tackle waiting times for cancer care, including: 1) the introduction of maximum waiting time targets; 2) the regular evaluation and assessment of waiting times; 3) the introduction of fast-track pathway (OECD, 2020[121]). In addition to improved early identification, time targets have proved helpful. The United States set specific timelines for the assessment of needs to ensure that access to EOLC is not delayed. Under Medicare, hospices must perform patient-specific comprehensive assessment of the patient’s needs. It consists of an initial assessment within 48 hours from referral and the physician, patient or patient’s representative can request to complete it in less than 48 hours. Following the initial assessment, a comprehensive assessment must be completed within five days from referral (OECD, 2020-2021[11]). In the United Kingdom, the NHS has put in place a fast-track assessment of needs for people whose health status is deteriorating quickly. The fast-track funding allows patients to receive free and appropriate care and support in the shortest available time, within 48 hours. The assessment is performed by a clinician and then by a clinical commissioning group. The outcome of the assessment is regularly reviewed and updated (NHS, 2021[110]).

Early integration of end-of-life care in the care of people with life threatening and life limiting conditions has proven to be beneficial to improve their quality of life (Vanbutsele et al., 2018[122]). In some cases, weak links between hospitals and community-based providers can exacerbate limited access to palliative care. To overcome this, there are positive examples of models of care promoting the early identification of palliative care needs, early introduction of palliative care, the creation of linkages and communication channels between care settings. This has been undertaken for patients with cancer, suggesting that palliative care can be integrated into the routine practice of oncology providers, with appropriate education, integration into existing clinical workflows, and administrative support (Adams and al., 2019[123]). In some instances, to ensure early referral, automated referral based on triggering criteria is being actively explored, using routine technology-assisted symptom screening, combined with targeted needs-based automatic referral to outpatient palliative care (Mathews, Hannon and Zimmermann, 2021[124]). Studies show that such early integration through monthly consultation by a palliative care nurse and more frequent consultations by a psychologist show improvements in patients’ quality of life (Kaasa and Lodge, 2018[125]). Germany is currently testing the Palliative Care Indicator Tool (SPICT) to help GPs identify palliative care needs among the population. The tool is currently tested and evaluated in Lower Saxony, a predominantly rural region. The project will run for 42 months with a budget of 690 000 euros (Gemeinsamer Bundesausschuss, 2022[126]).


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← 1. This report conceptualises end-of-life care as the care provided to people who are in the last 12 months of life. It refers to the terminal stage of palliative care, as well as including some elements of curative care and help with mobility limitations. Chapter 1 of this report provides a more detailed definition of EOLC.

← 2. Several prognostic tools have developed over time but there is still considerable variation about accuracy. The most commonly available tools are the following: Gold Standard Framework – Proactive Identification Guidance (GSF PIG), Supportive, and Palliative Care Indicators Tool (SPICT), RADboud indicators for PAlliative Care Needs( RADPAC), and Necesidades Paliativas [Palliative Needs]: NECPAL tool). In addition, there are Surprise Question (SQ), and the double Surprise Question which have been suggested as a trigger for referral to specialist palliative care and are considered easier diagnostic tools.

← 3. Data refers to median waiting time for end-of-life home care.

← 4. Data from Landspitali and Akureyri Hospital.

← 5. Countries with national policies to check the length of timing to access services include Estonia, Ireland, Italy, Korea, Portugal, Slovenia, United States.

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