3. Making end-of-life care more people-centred
This chapter discusses people-centredness of end-of-life care (EOLC). It illustrates that information gaps among the general population and health care professionals lead to stigma and hamper conversation and shared decision making. Efforts to involve patients in decision-making are rising but fall short. Evidence shows that gender, age, diagnoses, ethnic and cultural background influence people’s experience at the end of life. The chapter suggests pathways towards more people-centred EOLC which include raising awareness around death and fostering the voice of patients and communities. Training and guidelines can support health care workers to undertake difficult EOLC conversations to align care to people’s wishes, while patient reported measures can help monitoring people’s satisfaction with EOLC. Finally, multidisciplinary EOLC conversations involving all relevant stakeholders can facilitate co-ordination and improve the
As in other parts of health systems, there is a need to make sure that people at the end of life receive appropriate care according to their needs and wishes. People-centredness in end-of-life care1 (EOLC) has been found to improve user satisfaction, outcomes and may also help to lower health care expenditures (Thomas K, 2018[1]). Given the wide range of benefits, a focus on a more people-centred end-of-life care can help policy makers, health care professionals and providers understand better how to improve quality of care and how well care is organised around people’s needs. It can also help those in need of care to have their say in terms of the care process and choices. People-centredness is integral to more holistic and humane care for people dying and their relatives.
Yet, this chapter shows that disinformation and stigma around death and dying hamper the provision of people-centred EOLC. Knowledge around end-of-life care is poor in the general population as well as among professionals. Only a minority of patients make use of advance care planning (ACP). Communication with, and involvement of, patients in decisions regarding their end of life remains rare among professionals without palliative care training, with lack of information by both the clinicians and the patients’ side is often cited among the main causes of poor communication. Moreover, stigma towards the end of an individual’s life, language barriers and other cultural traits hamper the spread of information among some patients’ groups, creating disparities. When people reach the end of their life, they often experience physical, psychosocial, and spiritual needs that are not always adequately addressed.
The chapter discusses how EOLC can become more people-centred through greater information regarding the process of dying and the care opportunities for people reaching the end of their life. Public discussion, better training for clinicians, planning care in advance (i.e. making decisions regarding their care preferences, in a shared decision-making process) and creating or increasing the number of multidisciplinary EOLC teams (i.e. creating groups of health care professionals qualified in different fields to holistically address all the needs of the person at the end of life) are some of the steps countries can take to make EOLC more people-centred. This chapter provides examples from best practices in countries to illustrate this range of policies.
The remainder of the chapter is organised as follows. Section 3.1 highlights the sub-principles of people-centred end-of-life care. Section 3.2 illustrates the consequences of current health systems lacking such focus while 3.3 explores policies and best practices to ensure an informed, collaborative, inclusive and holistic end-of-life care.
Knowledge of the type of end-of-life care services available is rare among the general population. Fewer than one in two adults in OECD countries report having some knowledge around EOLC, despite more than 80% of OECD countries having programs to promote palliative care2 literacy. Only 8 countries measure stigma around EOLC, despite its role in hampering the use of EOLC services.
Communication on health status and care possibilities at the end of life are less frequent than they should be: fewer than half of persons have such conversations with their doctor. Professionals often feel unprepared to start such discussions with patients and relatives and are not fully knowledgeable about the concepts of advance care planning and advance directives (AD). Planning, recording of wishes and shared decision-making fall short: Only one-quarter of patients and professionals write advance directives, and data on the use of advance care planning is not regularly collected.
Disparities at the end of life by type of disease, gender and ethnicity prevail. Cancer patients – representing between 29% and 95% of palliative care recipients – are far more likely to receive palliative care at the end of life compared to other patient groups and women are more likely to receive it than men. While ethnic and cultural disparities at the end of life are well-known, only 10 of 24 OECD countries have developed some form of regulation to take cultural aspects into account in the decision-making process around the end of life.
Policy options
EOLC services need to be more oriented towards the patients’ and their families’ wishes, with services provided in compliance with their preferences. This involves several components:
Greater public discussion on death and dying is needed to improve people’s knowledge regarding end-of-life care and to reduce stigma around the topic. Public campaigns are an effective way to spread information and facilitate discussion. The French campaign on palliative care, for instance, resulted in 86% of long-term care facilities’ managers showing good knowledge on the topic. Furthermore, countries are already developing associations, lobbying groups, and professional associations to give people a voice in policy making around end-of-life care. Most European countries have at least one national association on palliative care and OECD countries have between 1 and 7 national professional associations on palliative and end-of-life-care. Belgium, Canada, Costa Rica, New Zealand, Spain, United Kingdom, and the United States have started to develop compassionate communities, which provide support to people at the end of life and their families, as well as spreading knowledge around end-of-life care within the general population.
Multidisciplinary and recurrent conversations seem to be beneficial enablers of good, shared decision-making. As decision making at the end of life goes beyond medical decisions, support by trained non-physicians can be desirable particularly in the earlier stages of disease, while physicians are required to step in for specific health care decisions. Improved training for health care workers can help to foster communication and involvement of patients and their families in decision-making regarding their loved ones’ health. Data collection on the use of advance care planning would be instrumental to monitor progress on the uptake of care planning. Canada and the United States have developed training and guidance for health care professionals to support open communication with people at the end of their lives.
Translating relevant information into different languages and training professionals on ethnic and cultural differences would facilitate access to EOLC services for ethnic and cultural minorities. Fighting the stigma around death and dying and improving general knowledge of end-of-life care could contribute to reducing disparities at the end of life. The United States provides training and guidance on cultural specificities to professionals who care for people with culturally diverse backgrounds. Australia includes tailored communication for cultural minorities within campaigns and programmes to spread information on EOLC within the population.
For end-of-life care, as for other parts of health care, there are rising expectations over what professionals should deliver and a push for systems to become more responsive to the people who use them. The OECD has developed a framework for people-centred health systems which highlights that such a system entails placing people, their families, and communities at the heart of health systems, empowering them, building care around the needs and expectations of the individual, and delivering health in a way that makes the best use of the resources available (OECD, 2021[2]). Building on such framework and the literature and strategies on end-of-life care and palliative care, this section develops the different components of what people-centred end-of-life care would need to provide quality of life to people at the end of life, while also being tailored on the patients’ and their families’ needs. The section reflects the components (sub-principles) of the people-centred principle: informed, collaborative and inclusive EOLC.
To make EOLC people-centred would require that people are informed regarding death and care possibilities at the end of life. This includes developing knowledge and awareness of end-of-life care in the general population and reducing the stigma associated with death and dying. The lack of good information around the end of life is correlated to low use of end-of-life-care, hampers good communication between patients and professionals and can cause disparities at the end of life (Kleiner et al., 2019[3]). With societies becoming increasingly diverse, with a variety of cultures and beliefs coexisting within communities, it is critical that these differences are respected. People from ethnic and cultural minorities face bigger challenges related to language and cultural barriers, resulting in lower access to end-of-life care (Ejem et al., 2019[4]). Patients and their families must receive information to empower them to make decisions about their and their loved ones’ care, feel able to communicate openly with health care workers, their ethnicity and cultural traits respected by health care workers, are listened to and their wishes followed.
Professionals report that collaborative EOLC can be challenging due to a lack of training on how to start adequate and open communication around death and dying (Swerissen, 2014[5]). Patients and families may also lack the required information to understand the importance of planning care in advance and they may not be able to recognise the right moment to start conversations around death (Bamford et al., 2018[6]; Brighton and Bristowe, 2016[7]; Henderson et al., 2018[8]; Travers and Taylor, 2016[9]). Poor communication around the end of life reduces the access to information and hampers the use of care planning. Improving communication requires ensuring that professionals have the right skills and knowledge around EOLC to face such discussions and that people and their families are entitled to their choice in care, that they are consulted and receive care that is respectful.
Decision making regarding the end of life should be inclusive, with people at the end of their life and their relatives able to plan care in advance to ensure that their preferences are clearly stated and taken in account. This would require improving awareness around care planning among the general population as well as professionals. Not planning care in advance might lead to undesired care and misalignment between preferences and experiences around the end of life (e.g. their preferred place of death). The lack of advance directives also puts the burden of choices on the patients’ relatives, who might not be aware of the patients’ preferences.
End-of-life care provision is not truly people-centred yet. Information and knowledge about services is often lacking among the population and even among health care professionals and communication about services and treatment is often poor. People at the end of life and their relatives experience disparities of care (e.g. disparities across ethnic groups, ages, genders, and disease groups), mental ill-health and poor focus on psycho-social, spiritual and bereavement help.
3.2.1. Knowledge around end-of-life care services is limited
Lack of awareness around palliative care services among the public is widespread. Evidence from Australia, Canada, Japan, Italy, Sweden, and the United States report that most adults lack good knowledge regarding palliative care, while more encouraging results emerge only from New Zealand and Scotland. A minority of people interviewed in Australia (38%) and in Canada (48%) were able to provide a good definition of palliative care. Similarly, a high share of people interviewed in Japan (63%), Italy (40%) (Sonja McIlfatrick, 2013[10]) and Sweden (84%) reported having some or no awareness of palliative care (Westerlund et al., 2018[11]). In France, 81% of people aged 50 or older did not know what advance directives were (Centre National Fin de Vie Soins Palliatifs, 2018[12]). In the United States, studies highlight that the share of adults with no knowledge around palliative care has been steady and equal to 70% between 2011 and 2016 (Lane, Ramadurai and Simonetti, 2019[13]). Although New Zealand and the United Kingdom (Scotland) seem to perform better, with a good part of respondents being able to provide a definition of this type of care (respectively 85% and 49% of surveyed samples) (Sonja McIlfatrick, 2013[10]), they represent only a minority of OECD countries. Studies in Germany showed that between 20% and 30% of patients did not know what advance directives were (Evans et al., 2012[14]).
Barriers recognised as hindering the spread of knowledge regarding these services include: i) taboos associated with death – which cause shame – and absence of public debate, ii) lack of discussion at the time of diagnoses of a life-limiting disease, leading to inadequate information and iii) lack of funding for EOLC services (Sonja McIlfatrick, 2013[10]; Westerlund et al., 2018[11]). In Australia, where 90% of surveyed adults agreed on the importance of thinking about end-of-life care wishes in advance, only 50% did so. Respondents to the survey considered the topic of death and dying too difficult to approach with their family members (Mirage, 2021[15]). Taboos around death and dying are common around the general population as well as among health professionals. Clinicians often find it challenging to start conversations regarding the end of life and prefer to propose life prolonging care to provide hope.
Because taboos, shame, and stigma around EOLC can slow down the spread of information, it is important to be able to recognise and address such barriers. Yet such attitudes are seldom measured and monitored. Out of 27 surveyed countries, only 8 reported measuring the attitude and stigma around EOLC and death at the national level, and 4 at the local level (Figure 3.1).
Two key international measures of awareness about EOLC information among the population already exist. The European Association of Palliative Care (EAPC) collected information from 51 countries in 2019, including 28 OECD countries. It explored the existence of a national palliative care directory of services, which provides information about existing services and raises awareness at a population level around the availability of EOLC services (Arias-Casais et al., 2019[17]). The 2015 Quality of Death Index Ranking includes analysis as to whether countries have discussion and public awareness about end-of-life choices, as well as the availability of volunteer workers for EOLC. It ranked 80 countries, including 32 OECD countries, and found that Belgium, New Zealand, France and the United Kingdom performed best, while Türkiye, Colombia, Mexico, Lithuania and the Czech Republic were among the OECD countries with the worst performance on this indicator (Murray, 2015[18]).
3.2.2. People are still frequently left out of care decision making and policy design
People-centred end-of-life-care includes giving people an active role in planning the end of their life. People’s involvement starts from clear and timely conversations on their health status and care opportunities and includes shared decision making based on their wishes (e.g. through advance care planning, see Box 3.1). Evidence exists that advance care planning conversations not only reduces patients’ and relatives’ anxiety and depression and clinicians’ distress, but that patients further benefit by receiving less intensive treatments, receiving care in line with their wishes, and dying in their preferred place of death (Khairuddin et al., 2020[19]; Silveira, 2022[20]). Furthermore, listening to people’s experiences and preferences of care through surveys and vital communities can give people voice, giving policy makers and providers a better idea of their preferences and care satisfaction, which can be fed into policy design. Nevertheless, evidence suggests that open conversations between clinicians and patients regarding death and dying and the possibilities of care rarely take place, or to a lower extent than what people wish (Bélanger, Rodríguez and Groleau, 2011[21]).
Conversations between people reaching the end of their life, their relatives and clinicians serve to provide information regarding the patient’s health status and the possibilities of care and to involve them in decision making regarding the end of life.
When talking about such conversations, Advance Care Planning (ACP) refers to the process through which the people at the end of life make decisions regarding their care preferences, in a shared decision-making process. People can make their wishes clear and may designate a proxy person (or attorney) to make decisions for them when they will no longer be able to. They can also decide to include Do-Not Attempt Resuscitation (DNAR) orders within their preferences.
The terminology Advance Directives (AD) refers to the final output of the planning process, a document where all decisions made during the ACP conversation are described. The extent to which AD are legally binding varies by country and based on its content (e.g. the description of a preferred type of treatment vs a DNAR order).
3.2.3. Several barriers hamper good communication on health status and care preferences
Communication plays a key role in accepting and addressing issues related to the end-of-life phase of an individual’s life, both for the individual and their family. Communication enables patients and families to be informed and involved into the decision-making process regarding the end of life. Evidence suggests the importance of communication between the person near their end of life and health care workers to reduce distress both on the patient’s and clinician’s side, as well as to align the care received with the person’s preferences (Khairuddin et al., 2020[19]; Silveira, 2022[20]).
People and their relatives do not always perceive the communication with health care professionals to be satisfactory. In Ireland, nearly half (45%) of surveyed bereaved relatives reported that the person at the end of life was probably or definitely not aware of being likely to die, while only 40% of them reported that the news that the person was likely to die was communicated in a sensitive way (Ó Coimín et al., 2019[22]). In Sweden, 34% of surveyed family members believed that professionals provided information regarding the imminence of death in a caring and respectful way, but 33% also thought that the dying person was not aware that their death was imminent (O’Sullivan, 2021[23]). In the United Kingdom, according to the VOICES survey for bereaved families, most people (between 74% and 86%) agreed that they had received and understood information on the health status of the dying person and that they had enough time to ask questions to the staff. Nevertheless, such results were much lower in hospital settings than at home (ONS, 2016[24]).
Barriers to EOLC conversations exist on both clinicians and patients’ sides. Finding the right moment to start a conversation and provide understandable and clear information can be difficult for clinicians. Clinicians often find it difficult to talk about death and prefer to provide life-prolonging treatments to give patients and their families some hope (GAO, 2019[25]; Luna-Meza et al., 2021[26]; Swerissen, 2014[5]). Data from Dutch studies report that only 38% of nursing home staff and 40% of care home staff answered four to five out of five when tested around end-of-life conversations, showing a lack of knowledge around the topic (Evenblij et al., 2019[27]). Moreover, lack of adequate space and low staff ratios in long-term care seem to hamper the opportunity for people in long-term care (LTC) facilities to engage in end-of-life care conversations. Such barriers add up to stigma and lack of adequate training which are widely shared across health care settings (Harasym et al., 2020[28]).
Poor understanding of the end-of-life process by patients and family members make it difficult to initiate such conversations and flag decisions not in line with patients’ choices. For instance, people affected by dementia and their families may not recognise dementia as a life-threatening disease and might refuse to talk about death and dying until it becomes too late (Bamford et al., 2018[6]). Furthermore, patients may also miss the opportunity to ask questions or may even receive contradictory information from different clinicians (Brighton and Bristowe, 2016[7]; Henderson et al., 2018[8]; Khairuddin et al., 2020[19]; Travers and Taylor, 2016[9]). Clinical and technical issues may also limit the flexibility in undertaking conversations on the end of life. For instance, when the disease is too advanced, or the bureaucracy involved in expressing and ensuring a patient’s wishes are carried out can feel overwhelming for a person or their families (Kononovas and McGee, 2017[29]).
3.2.4. Shared decision making does not take place to the extent people wish
Involvement in decision making and recording people’s preferences is lower than what people wish. A systematic review of studies on shared decision making found that between 40% and 87% of people want to participate in decision making on their health care (Bélanger, Rodríguez and Groleau, 2011[21]). The 2021 Commonwealth Fund International Health Policy Survey of Older Adults reports that in most countries analysed, less than half of older people (aged 65 or older) have a document reporting their preferences of care or has defined a proxy person (Figure 3.2). Another survey of Australian residential aged care facilities in New South Wales showed that only a small minority (5%) of residents had completed ACP (Swerissen, 2014[5]). In France, a survey reported that 34% of adults aged over 50 would like to write advance directives, but only 13% has written one (data from 2019) (Fin de vie soins palliatifs - centre national, 2019[30]). In New Zealand the VOICES survey to bereaved family reports that only 26% of decedents had completed ACP and 51% of relatives reported that ACP was beneficial (Reid et al., 2020[31]). In Belgium and the Netherlands, ACP was applied to around 30% of terminally ill patients in 2011 and most often discussed only verbally and with the patients’ families (Meeussen et al., 2011[32]). Switzerland has recorded an increase in AD completion between 2014 and 2017, moving from 25% to 36%, with much variation among its regions (Kleiner et al., 2019[3]). None of the surveyed OECD countries were able to report the total number of people completing ACP or DNAR, except for Iceland which recorded in 2020 around 247 patients with DNAR at the moment of their death and 389 with end-of-life orders recorded, compared with 1 037 people who died in Iceland from diseases that most often require EOLC.
Note: Share of older adults who replied “yes” to the questions “Do you have a written plan or document describing the health care treatment you want or do not want at the end of your life?” (left-hand side) and “Do you have a written document that names someone to make treatment decisions for you if you cannot make decisions for yourself?” (right-hand side). Older adults refer to people aged 65 or older.
Source: (Commonwealth Fund, 2021[33]).
Studies analysing the practitioners’ side reveal a similar picture. In Germany, studies have reported that only 39% of physicians indicate having conversations on advance directives with patients. Most surveyed physicians also indicated a preference for patients and families to initiate a conversation about AD (Evans et al., 2012[14]). In Japan, only 29% of doctors and 28% of nurses interviewed answered that they were practicing ACP, while 48% of doctors and 57% of nurses declared that they were not planning to use ACP (Tamiya, 2018[34]).
Studies also indicate that there is a lack of knowledge around advanced directives among health professionals (Swerissen, 2014[5]). Only 16.7% of health professionals in Lithuania were familiar with the concept of advance directives, with physicians being more familiar than nurses and pharmacists (Peicius, 2017[35]). Similar results have been found in New Zealand, with nurses having scarce knowledge of the legislation regarding AD and low AD completion rate, despite viewing AD’s as being valuable to patients (Duke and Thompson, 2013[36]).
People at the end of life often experience a set of comorbidities that require several specialists. This causes fragmentation in the care received, which translates in poorer outcomes of care. Studies have found that people in the last year of life, particularly those with comorbidities and chronic illnesses are more likely to receive fragmented care, resulting in higher costs of care and more aggressive care at the end of life (Hafid et al., 2022[37]; Sharma et al., 2009[38]). When starting conversations on preferences of care at the end of life, these might involve a multidisciplinary team to minimise care fragmentation.
3.2.5. Efforts to give people voice are rising, but further development is still needed
Users’ survey on experiences at the end of life are uncommon and surveys’ results are rarely published (Rumbold and Aoun, 2021[39]). Collecting information on people’s experiences of care and engagement in care decisions produces useful information to steer policy making. Where surveys assessing people’s and families’ experiences with end-of-life care exist, they are often used for internal purposes, rather than for benchmarking and policy making. The Views of Informal Caregivers Evaluation of Services (VOICES) survey in the United Kingdom collects and publishes data on the way people experience end-of-life-care services. It is a survey for bereaved family members, around the care provision in the last 3 months of life. The survey includes questions regarding the quality of conversation between people at the end of life and health care workers, the clarity of information, the kindness and respectfulness experienced, the involvement in decision making. Other countries, such as Ireland, New Zealand and Sweden translated and adapted the VOICES survey to collect similar information. The Survey of Health Ageing and Retirement in Europe (SHARE) collects information on the experiences of end-of-life care through a survey to families after the person dies. The survey asks whether the pain medication, the help with anxiety and with breathing issues was adequate, how often the personal care needs were met and how often the staff was caring and respectful with the patient. Results from years 2017-20 show that the staff was perceived as being caring and respectful most of the time. Over 70% and over 20% of people reported that the staff was respectively ‘always’ or ‘usually’ respectful and caring (SHARE, waves 7-8). Results from questions on care needs are reported in more detail in Figure 3.9 below.
The activity of palliative care professionals and associations varies greatly across countries. Such associations can help to set EOLC high in the public discussion and policy making and to ensure that the needs of the patients and their families are adequately addressed. Public involvement can help advance research by developing people-centred research questions, aid recruitment to studies, and support dissemination of findings to a wider community. Associations and lobbying groups representing people’s preferences can also influence policy making and contribute to designing a more people-centred end-of-life-care. Active end-of-life care communities are starting to emerge, with certain countries showing a greater degree of community engagement and vitality. The EAPC reported that around 1 180 participants attended the 10th World Research Congress of the EAPC in Bern, Switzerland. The United Kingdom had the highest number of attending delegates (133), even more than the hosting country, Switzerland (130). The Netherlands (112), Germany (96), Belgium (55), Sweden (34), Denmark (32) and Spain (30) also had a good number of participants. These 8 countries represented more than half of all participants, showing that representation from other countries was substantially lower (Arias-Casais et al., 2019[17]). Furthermore, the 2015 Quality of Death Index measured the community engagement by looking at public awareness of palliative care and the availability of volunteer workers. New Zealand and Belgium ranked at the top, followed by France and the United Kingdom (The Economist Intelligence Unit, 2015[40]).
Compassionate communities, which can contribute to awareness around EOLC and support families going through the process, have developed in the past decade, but are still incipient in many countries. Compassionate communities consist of groups of people who are engaged in their communities to provide support to people with life threatening and life limiting diseases who are near the end of their life and to everyone who is experiencing death and dying of loved ones. Such communities represent a way to ensure that all people’s needs are considered, holistically, providing psychosocial and spiritual support to the people at the end of life and their families. Furthermore, compassionate communities can also facilitate discussion about the end of life and advance care planning. Some evidence of the impact of compassionate community exists and has found that they improve patients’ and carers’ quality of life, influence the place of death, and reduce unplanned visits and hospitalisations. For instance, results from Spain show lower unplanned hospitalisations while evidence from the United Kingdom reports both lower unplanned hospitalisations and lower patient isolation (Aoun et al., 2020[41]). A systematic integrative review on the existence of compassionate communities worldwide found articles with respect to 22 communities, of which 11 were in Europe, 6 in South America, 2 in Australia and 1 in Canada and such communities were mostly limited to an individual town. One common trait across communities is that they involve schools, local organisations, media, and politicians. Despite their bottom-up implementation, compassionate communities often require political support, to allow for better development and funding, especially since ensuring the sustainability of initiatives can be a challenge (Quintiens et al., 2022[42]).
3.2.6. Disparities in treatment and care are apparent
Factors such as ethnicity and cultural background, gender, age, as well as the type of disease can influence the type and quantity of care people receive at the end of their lives. Despite a growing diversity, ethnic and cultural disparities at the end of life persist in OECD countries. Women seem to receive more EOLC, compared to men, and younger people have easier access to this type of care compared to older patients. Moreover, cancer patients receive EOLC more often than patients affected by other diseases do. A review of reviews regarding conversations at the end of life and advance care planning found that discussions happen most often with patients who are older, white, female, well-educated and with cancer or comorbidities (Hall, Rowland and Grande, 2019[43]). The health care sector must ensure equal access to a comfortable end of life, attaining the highest possible quality of life until the very end. Providing a truly people-centred EOLC entails offering care that is appropriate and tailored to the individual. Differences in age, disease type, gender, ethnicity, and cultural background should be considered to provide tailored care but should not represent causes of discriminations or disparities.
Ethnic and cultural disparities persist despite growing diversity
Ethnic minorities constitute a growing part of OECD societies. Ethnic diversity has increased and is forecasted to increase even more in a number of countries, such as Australia (from 31% in 1996 to 38% in 2016 (Wilson et al., 2020[44])), New Zealand (from 27% in 2018, to 25% in 2013 (Stats NZ, 2019[45])), United Kingdom (non-white groups expected to represent around 20% of the population in 2051 (Natalia Calanzani, 2013[46])) and the United States (ethnic minorities are estimated to constitute 40% of the population over 65 by 2050 (Martina Orlovic, 2019[47])).
Despite growing ethnic and cultural diversity in OECD countries, disparities in access to end-of-life care among minorities persist. Several studies have shown that ethnic and cultural minorities tend to receive less end-of-life care, compared to the general population. Furthermore, minorities are more likely to receive more aggressive care at the end of life and less likely to plan care in advance, resulting in care that is inconsistent with the patients’ preferences (Ejem et al., 2019[4]). While most of the studies on the topic have been carried out in the United States, similar results have also been found in Australia, Canada, New Zealand, and the United Kingdom. In the United States, the National Hospice Palliative Care Organisation has found that a large majority of palliative care users are White/Caucasian (81% in 2013), a high percentage compared to their size within the general population (estimated to be 60% in 2019 (United States Census Bureau, 2019[48])) (NHPCO, 2022[49]). Low use of end-of-life care services among minority groups has also been encountered in Australia (Clark and Phillips, 2010[50]), Canada (Yarnell et al., 2020[51]), New Zealand (Nelson-Becker and Moeke-Maxwell, 2020[52]) and in the United Kingdom (United Kingdom) (Marie Curie Cancer Care, 2014[53]). These results are even more concerning when considering that often minorities have higher rates of chronic illness and higher death rates from chronic illnesses that require end-of-life care (Isaacson and Lynch, 2017[54]). Moreover, ethnic minorities are less likely to plan their end of life in advance compared to White/Caucasian Americans, a finding that holds even after controlling for cultural and religious belief (Orlovic, Smith and Mossialos, 2019[55]).
Poor information and understanding of end-of-life care, together with the language barrier hinder access to good end-of-life-care for ethnic and cultural minorities. Studies from the United States on Mexican American end-of-life care recipients aged 50 or older report difficulties in accessing information in their native language. Policies aimed at improving end-of-life care knowledge and discussion mainly produced adverts in English, while Spanish translations were rarely available. Moreover, even Mexican American patients who are generally proficient in English encountered serious difficulties carrying out health care discussions in English, when they were distressed (Crist et al., 2018[56]).
Beyond the language barrier, broader cultural barriers often appear to cause disparities in access to end-of-life care, as misunderstanding can arise from cultural differences between patients and clinicians. Misalignment in perceptions between health care providers and patients are an issue, with clinicians feeling empathetic and open to communication and patients perceiving a very detached approach from the health care side (Isaacson and Lynch, 2017[54]). Furthermore, an analysis involving Colombian physicians reported that professionals face greater challenges when starting end-of-life-care conversations with indigenous population, which can, in some cases, be particularly reluctant to talk about death due to cultural taboos (Luna-Meza et al., 2021[26]). Personal beliefs and cultural factors can shape care preferences, with some cultures valuing patient autonomy while others placing greater value on family support and involvement in decision making. Informed consent and end-of-life care discussion can be a cause of anxiety and depression for some cultures, while others want to be protagonist of their health care choices for as long as possible (Clark and Phillips, 2010[50]).
Mistrust and lack of familiarity with the health care sector might also explain the lower access to end-of-life care and early planning of end-of-life care. Patients from ethnic minorities sometimes express a strong preference for intensive treatment and they refuse to have treatments withheld at the end of life due to a perceived unequal access to the health system throughout their life (Orlovic, Smith and Mossialos, 2019[55]) and thus fear of under treatment (Connolly, Sampson and Purandare, 2012[57]). In the United States, African American and Hispanic people tend to receive more intensive care at the end of life and are more often hospitalised for symptom relief at the end of life than White/Caucasian Americans. Misunderstandings between the patient’s and clinicians’ side further boost the sentiment of distrust (Laguna et al., 2012[58]).
The COVID-19 crisis has exacerbated ethnic and cultural disparities at the end of life. The measures in place to stop the spread of the virus have been challenging for all patients at the end of their life and their families, regardless their background and beliefs. Nevertheless, minorities appeared particularly affected by these measures. Wearing masks made communication particularly complicated for non-native speakers. Visiting restrictions reduced the possibility to rely on external translators and hindered the possibility to fulfil religious and cultural rituals and responsibilities. Face-to-face access to faith leaders from ethnic minorities was limited, restraining the opportunities to receive adequate spiritual support at the end of life (Bajwah et al., 2021[59]). In Italy and Spain, migrants were more likely to be hospitalised, while France, the Netherlands, Sweden and the United Kingdom recorded higher all causes mortality among migrants in 2020, compared to previous years (Kumar et al., 2021[60]). Results from a survey conducted in the United Kingdom have also highlighted disparities in accessing adequate care. Among service providers, hospitals were more likely to care for patients coming from minority groups, compared to hospice and home care teams. Finally, care was rarely tailored on the specificities of the patients. Most respondents (66%) reported supporting all patients in the same way, regardless their ethnic and cultural background (Bajwah et al., 2021[59]).
Despite this, measures to address the abovementioned barriers to people-centred end-of-life care are not widespread. Currently only 10 out of 24 OECD countries have developed some form of regulation to take cultural aspects into account in the decision-making process around the end of life (Figure 3.3).
Source: (OECD, 2020-2021[16]).
Cancer patients are more likely to receive EOLC
Another element of disparity at the end of life is the diagnosis. Cancer patients are more likely to receive hospice care and to plan care in advance than non-cancer patients are. Cancer and dementia patients also report better quality of care at the end of life. A study performed in Australia showed that, in 2010, 69% of people who died from cancer had access to palliative care during the last year of life, compared to only 14% of non-cancer patients (Sleeman et al., 2015[61]). Similar results also come from Canada, Ireland, and the United Kingdom. In Canada, people with cancer diagnoses are up to three times more likely to receive palliative care in the last year of life (CIHI, 2018[62]). In the United Kingdom, a study reported that between 2012 and 2013, most patients (75%) who received hospice care at home were cancer patients (Buck et al., 2020[63]). This mirrors findings from Germany that the overall percentage of non-cancer diseases receiving palliative care is disproportionately low, with barriers to palliative and hospice care for these patients persisting (Stiel et al., 2015[64]). Already in 2003, the Irish House of Commons recognised the inequity in access to palliative care services for non-cancer patients (Irish Department of Health, Social Services and Public Services, 2010[65]). The share of non-cancer patients receiving end-of-life-care in Ireland has increased in recent years but remains a minority. For specialist palliative care in the community, the share of non-cancer patients was 17% in 2010 and 30% in 2016, while for inpatient care it moved from 7% to 14% over the same period (HSE, 2017[66]). family members of palliative care recipients who died from cancer reported significantly better quality of EOLC with higher rates of palliative care consultations and do-not-resuscitate orders and fewer deaths in the intensive care units as the causes of higher quality palliative care (Wachterman et al., 2016[67]). These findings may be partially explained by palliative care having historically focused on those with cancer and the bulk of literature informing palliative care practices stemming from the care of cancer patients (Bostwick et al., 2017[68]). On the other hand, cancer patients are also more likely to be hospitalised during the last year of life in OECD countries, despite cancer having a more predictable trajectory at the end of life compared to other diseases and therefore being easier to plan for (De Korte-Verhoef et al., 2014[69]; OECD, 2020-2021[16]; Vestergaard et al., 2020[70]).
The OECD analysis of data from Denmark, Israel and Lithuania shows a large difference in access to palliative care across disease groups is striking in all the countries has produced similar results (Figure 3.4). The difference analysed and particularly so in Israel, where the overwhelming majority (95% in 2018) or patients receiving palliative care services are cancer patients. The differences in access to palliative care are less striking in Denmark, where patients with highest access to palliative care are cancer (29% in 2019) and dementia (23% in 2019) patients, while patients affected by chronic respiratory diseases and cardiovascular diseases are less likely to receive palliative care (respectively 6% and 10% in 2019).
Note: Data refer to 2018 (Israel), 2019 (Denmark), 2020 (Lithuania).
Source: (OECD HCQO-EOLC pilot, 2021[71]).
Patients’ age influences care preferences and treatment at the end of life
Both care preferences and the care received at the end of life seems to vary depending on the patients’ age. Younger patients usually tend to prefer more life-prolonging treatments compared to older patients, who tend to value less aggressive care more. At the same time, older patients appear to be less likely to receive desired life-prolonging treatments than younger patients are, while younger patients are less likely to avoid unwanted life-prolonging treatments. These results have been found by a study on deceased cancer patients in the United States (Parr et al., 2010[72]). Similar findings come from France, where an analysis of French hospital databases showed that a high proportion of young cancer patients (61%) received chemotherapy in the last 14 days of life, and/or were admitted to hospital, intensive care units, emergency departments during the last 30 days of life (Das, 2019[73]). Several studies have also found that ICU and intensive treatment decrease with age (Bylicki et al., 2019[74]; Levinsky et al., 2001[75]; Menec et al., 2007[76]). An analysis of the OECD data on ICU admissions in Canada, Czech Republic, Israel, and Switzerland indicates a decreasing rate of admissions in the last 30 days of life as the age of the patient increases (Figure 3.5)
Note: Data refer to 2018 for Canada, Israel, and Switzerland and to 2019 for the Czech Republic.
Source: (OECD HCQO-EOLC pilot, 2021[71]).
Data on chemotherapy received highlights that younger patients are associated with higher use of chemotherapy in the last 30 days prior to death (Figure 3.6). Other studies also found similar results (Abdel-Razeq et al., 2019[77]; Hui et al., 2013[78]; Mathew et al., 2017[79]; Randén et al., 2013[80]; Zhu et al., 2018[81]). This mismatch between patients’ preferences and care received might be driven by a societal bias. The death of younger people is less acceptable than that of older people. Thus, older people asking for and younger people avoiding life-prolonging treatments both challenge this societal norm (Parr et al., 2010[72]).
Note: Data refer to 2017 for New Zealand, 2018 for Israel, 2019 for the Czech Republic and Denmark, 2020 for Sweden.
Source: (OECD HCQO-EOLC pilot, 2021[71]).
Finally, an analysis of hospital admissions during the last year of life in 11 OECD countries shows that people aged 60+ are less likely to be admitted to hospital during the last year of life than those aged 30-59 in all countries except Lithuania and Sweden. However no clear trend exists between age groups (Figure 3.7).
Note: Data refers to 2017 for Slovenia, 2018 for Canada, Israel, and Switzerland, 2020 for Sweden, 2019 for other countries.
Source: (OECD HCQO-EOLC pilot, 2021[71]).
Males tend to receive more aggressive care at the end of life
Gender can also be listed among the factors determining disparities at the end of life. Evidence has shown that, when death nears, females are more likely to receive palliative care while males tend to receive more aggressive care until the end of life (Gott, Morgan and Williams, 2020[82]; Saeed et al., 2018[83]; Singh et al., 2017[84]). An analysis performed by the OECD also supports these findings, with only 27% of males receiving palliative care services in Denmark in 2019, a lower share compared to females (41%). Moreover, it appears that when males receive palliative care services, they are more likely to receive it only during the last days or weeks of life (Table 3.1).
Figure 3.8 shows that a higher share of patients hospitalised during the last year of life are males. Furthermore, an analysis performed by the OECD has found that males are more often admitted to ICU during the last 30 days before death than females, in Israel (26% of males vs 19% females in 2018) and Switzerland (10% of males vs 6% females in 2018). Similar results have been found for ED admissions in the last 30 days before death. Finally, the share of males receiving chemotherapy during the last 30 days of life is higher than that of females in Denmark and Israel (8% vs 7% in Denmark in 2019 and 30% vs 26% in 2018 in Israel).
Note: Data refers to 2017 for Slovenia, 2018 for Canada, Israel, and Switzerland, 2020 for Sweden, 2019 for other countries.
Source: (OECD HCQO-EOLC pilot, 2021[71]).
Men seem to be more likely to receive too little or too much treatment compared with women (Figure 3.9), according to the Survey of Health, Ageing and Retirement in Europe (SHARE) which asks family members of deceased older people (aged 65 or older) whether symptoms’ treatment was sufficient at the end of life. This occurs despite most people reporting that care needs were always (73%) or usually (17%) met.3
The provision of more aggressive types of care to male patients seems to be in line with their preferences. Females tend to prefer palliative care over other types of care at the end of life, while the opposite holds for males (Gott, Morgan and Williams, 2020[82]; Saeed et al., 2018[83]). The reasons underneath this gender difference in preferences of care and care received seem to be partly related to a persistent cultural bias. Societal norms still tend to see men as less vulnerable than women, a bias which might influence male patients’ preferences of care. Male patients might be reluctant to seek palliative care as they might perceive it as a sign of weakness to give up the fight against the diseases (Gott, Morgan and Williams, 2020[82]). Better information around the importance of palliative care has proven to improve the acceptance of palliative care services (Saeed et al., 2018[83]; Hoerger et al., 2017[85]). Thus, improving general population’s knowledge around EOLC might be beneficial in closing this gender gap.
Countries have adopted in recent years a range of measures to provide more people-centred EOLC. Several best practices adopted by countries are discussed in this section. Policies contributing to people-centredness of EOLC include the following: i) initiatives to improve discussion on death and dying and to address disinformation and stigma related to the end of life; ii) policies to increase the involvement of communities and professional associations in helping families and promoting public awareness; and iii) strategies to provide clinicians with the training needed to engage in the right communication with EOLC patients and their relatives and boost the use of instruments to plan care in advance.
3.3.1. Expanding information available and knowledge on end-of-life care across professionals, patients, and families
Improving the knowledge around end-of-life care in the general population, as well as health care professionals may reduce misconceptions. Being informed about EOLC is often correlated with higher recognition of its importance or willingness to use such services, showing the crucial role of information to develop a more people-centred EOLC. In Switzerland, people who knew about advance care planning or used it in the past had more positive perceptions of it than people with low knowledge of such concepts (Kleiner et al., 2019[3]). In the United States, nine out of ten adults interviewed recognised the importance of these services after receiving a brief description of what palliative care entails (Lane, Ramadurai and Simonetti, 2019[13]).
Considering the lack of awareness and information around EOLC services, countries are making efforts to improve the provision of information to patients in need of EOLC. Data collected by the OECD Secretariat indicates that 67% of responding OECD countries have some form of regulation requiring patients and families be informed of decisions regarding their EOLC, while 8% report having regulations at least in some regions or areas (Figure 3.10).
Source: (OECD, 2020-2021[16]).
OECD countries are also developing programs to improve information and awareness regarding the end of life in the general population, although more still needs to be done. Among the surveyed OECD countries, 83% declare having programs at the national and/or subnational level on palliative care literacy, 72% on general EOLC literacy, 45% on living will literacy and only 14% on Do-not Resuscitate (DNAR) literacy (Figure 3.11). The data shows that programs providing general information on end-of-life care or palliative care are more common than programs on more specific topics such as living wills and DNAR. While it is important to build awareness on care opportunities, it is also crucial that people are informed regarding their advance care planning opportunities (e.g. living wills and DNAR), to let people become real decision makers of their own care choices.
Some countries already developed programs to improve the provision of care at the end of life and raise awareness around the topics of death and dying among the general population, as well as among care providers. Talking about end-of-life care, including it among the topics of discussion on television (TV) and social media can help normalising the topic and reducing the stigma around it. Such programmes and campaigns have been organised in countries such as Japan, Korea, Luxembourg, Norway, Slovenia, and the United States (see Annex for more detail). In the United Kingdom, the organisation “Hospice UK” makes grants available for specific projects aiming at sharing information regarding the end of life in an innovative way (e.g. through art). Grants can go from GBP 999 to GBP 5 000. The latest programme opened in 2021 (Hospice UK, 2021[86]).
Programmes and campaigns have been used to spread information around EOLC among the general population through a variety of media platforms have been successful at dissemination. For instance, Australia has put in place eight different programs between 2015 and 2020, developed at the governmental (national) level and by non-governmental organisations, with a duration of at least one year. Four of the programs focussed on raising awareness and sharing information in the general public regarding death, dying and opportunities of care at the end of life. In the effort to involve a wide audience, such programs have been shared on TV, radio, and social media, as well as advertising billboards and flyers. The programs also included tailored communication to make the programme easily understandable for cultural minorities. For instance, the initiative “Palliative care: it’s more than you think” shared videos with animated characters showing the benefits of palliative care with a light and entertaining style. The initiative’s webpage also shares the stories of people who have gone through the end of life of a loved one, providing an opportunity to gather information around EOLC. In Ireland, in the last decade, such programs were organised by non-governmental organisations and endorsed by the Ministry of Health, targeting the general population and diffusing information through broad media involvement. Dissemination channels included TV, radio, social media, advertising billboards and flyers. In France, in 2016 the government established the “Centre national des soins palliatifs et de la fin de vie” to disseminate information around the end of life among the population and the health care workers, participate into decision-making to improve the support to people at the end of life and to collect data regarding end-of-life care. The centre also has a platform that people can contact to receive specific information on the end of life (Centre national des soins palliatifs et de la fin de vie, 2021[87]). Furthermore, the centre launched TV campaigns in 2017 and 2018 sharing information regarding the end of life and the possibilities to plan care in advance. France also used a website and social media to diffuse information to the general population and to professionals (Centre national des soins palliatifs et de la fin de vie, 2021[87]). Although awareness around end-of-life care conversations among the population and use of advance directives still show room for improvement, data from 2019 show that information around advance directives was widespread within LTC facilities, with 86% of LTC facilities’ managers showing good knowledge. Furthermore, 84% of the respondents who were informed around end-of-life care, reported having acquired the information through the media. Such results show that the programs and campaigns can be an effective way to improve the general population’s awareness around end-of-life care (Fin de vie soins palliatifs - centre national, 2019[30]).
In the United Kingdom, discussion around end of life has recently gained momentum, partly thanks to the death awareness movement. The movement aims at increasing awareness and reducing the stigma around death and dying and proposes alternative activities to discuss such topics. Examples are the death cafes and the coffins clubs. The death cafes represent an occasion for people to meet, have a drink and discuss death, while the coffins clubs are an international initiative (with eight groups in the United Kingdom) organising events where people can meet to make their own coffins and discuss death (Hansford, Thomas and Wyatt, 2022[88]).
Some countries developed programs that consisted of conferences and webinars for the general population, but also training for professionals on the topic of the end of life. For instance, Iceland organised programs to address attitudes towards death and dying and to monitor the quality of EOLC services. Five programs (four governmental and one non-governmental) took place between 2015 and 2016, with most of them lasting for a few hours or less than one month. Three of the programs consisted of a conference open to the general population, involving communities and services providers. Four Australian programs targeted health care providers, to train health care workers and improve the quality-of-care services for people at the end of life. The programs involved health providers and local communities. In the last decade, an international third sector partnership has started the ‘Last Aid’ project, which aims at providing training on end-of-life care to everyone interested in the topic. The project is carried out through a collaboration of partners of the third sector (i.e. the Paula Kubitscheck-Vogel-Stiftung foundation, the Würdezentrum think tank, Startsocial and the University of Southern Denmark) and currently provides training in several countries worldwide (around 20), including Norway, Denmark, Switzerland, Lithuania, Austria, Australia, Brazil, Slovenia, and Scotland, among others. Around 40 000 people have already received the training and around 3 500 instructors have received training. The courses are brief – they can typically be compacted into one afternoon – and cover four areas: i) dying as a part of life; ii) provision and decision; iii) relieve suffering; iv) farewell (Last Aid, 2022[89]).
Furthermore, there are several possible measures to address ethnic disparities at the end of life, such as translating relevant material on end of life, simplifying sentences, and using culturally relevant metaphors. Adapting campaigns and programs for minority languages can help improve end-of-life care knowledge among all communities within OECD countries. Improving information around the end of life entails sharing the message that end-of-life care is available for every person affected by a life-threatening and life-limiting disease, who might reach their end of life soon, regardless their diseases, age, gender, ethnic and cultural background.
3.3.2. Fostering the voice and engagement of families and communities in public discussions
A vibrant EOLC community, with active associations and lobbying groups can play a role in diffusing knowledge around the end of life, reduce the stigma attached to end-of-life care and influence decision making, placing EOLC higher in the agenda. Figure 3.12 shows the number of associations and lobbying groups devoted to end-of-life care and/or palliative care in 7 OECD countries, whose data are available. Ireland reports the highest numbers with 30 national and 2 subnational associations, followed by Canada, Australia, and Norway, with 5 or more associations/lobbying groups. Iceland, Luxembourg, and Slovenia reported at least one at the national level. Associations and lobbying groups on EOLC/palliative care also exist in Japan and in the United States. Although a comprehensive list is currently missing, Japan counts at least 3 national associations/lobbying groups and the United States at least 10. Colombia has been developing end-of-life-care since 2014. As of 2021, there are two national associations with associates coming from 17 out of the 33 regions. Colombia also organises biannual national palliative care congress (Sánchez-Cárdenas et al., 2021[90]).
Source: (OECD, 2020-2021[16]).
As of 2019, most European countries had established at least one national association on palliative care, but only around 24 European countries had established more than one. Among the latter, Germany, Norway, the Netherlands, Switzerland, and Latvia established a specific association on palliative care for children. Poland, Portugal, and the United Kingdom have established palliative care nursing national associations (Arias-Casais et al., 2019[17]). Among Latin American countries, Chile, Colombia, and Costa Rica had more than one association but Mexico had none reported.
There are also examples of international associations focusing on EOLC and palliative care. The EAPC, for instance, has specific task forces for prisoners, migrants, refugees in need of palliative care, as well as the EAPC primary care group. Such groups carry out research on possible innovative palliative care services. Such associations focusing on specific groups of people might improve the awareness around the needs and wishes that these groups of people might have at the end of life and share tailored information around the end of life among these groups. Improving the understanding of minorities’ needs at the end of life can contribute to the reduction of disparities and the provision of people-centred EOLC.
Belgium, Germany, Italy, and the Netherlands also have associations devoted to end-of-life care and/or palliative care. Belgium has both associations and networks engaged in the diffusion of information on these topics and in raising awareness among the general public. In Germany, the German Association for Palliative Medicine (DGFP) is active on several fronts. It carries out lobbying activities, while it also spreads knowledge around EOLC and palliative care through the organisation of congresses, meetings of working groups as well as publications. Germany also has specific associations for the provision of palliative care at home and for children. In Italy, there is the Italian Society for Palliative Care (SICP) – a professional association – as well as the Palliative Care Federation, which is composed by NGOs and works in close contact with the SICP. The Netherlands also has several specialised associations and foundations on EOLC and or palliative care (Arias-Casais et al., 2019[17]). The work of such associations contributes to a more people-centred EOLC on several fronts. Developing and sharing informative material helps improving the awareness around the end of life among the general population and sparks public discussion. Furthermore, participating to the policy making and collaborating with governmental bodies allows such associations to make the needs and wishes of people heard and represented in policies (IAHPC, 2022[91]).
Figure 3.13 shows the number of national and subnational professional associations on EOLC/palliative care.4 All responding countries but Slovenia only report associations at the national level. The number of associations ranges from one in the Czech Republic, to seven in Luxembourg. Luxembourg reported the highest number of professional associations despite its modest country size, showing that the professional environment on the topics of EOLC and palliative care is likely to be lively.
Source: (OECD, 2020-2021[16]).
Compassionate communities aim at fostering the voice of people at the end of life and support people with life-limiting diseases, those facing dying, death, caregiving, and grief to live well in communities that are aware and well informed around death, dying and end-of-life care. Over the past decade, compassionate communities have started to develop across OECD countries. Some countries have included the development of compassionate communities among their goals and have incentivised people to volunteer. For instance, the government of the United Kingdom has included the creation of compassionate communities among the objectives of the “Ambitions for Palliative and End-of-life care 2015-20”, which has then been reviewed in 2019 and relaunched in 2021, covering the period 2021-26 (NHS UK, 2021[92]). In New Zealand, Hospice New Zealand included community engagement among the goals of its strategic plan, and in Spain there is a strong community of volunteers providing end-of-life care who are involved in fundraising and in some cases receive training (The Economist Intelligence Unit, 2015[40]).
Examples of compassionate communities across OECD countries are in Belgium, Canada, Costa Rica, Germany, New Zealand, Spain, United Kingdom, and the United States. In the United Kingdom, the cities of Inverclyde (Scotland) and Plymouth (England) are examples of compassionate cities. In Inverclyde and Plymouth, community engagement and development to support people dealing with an end-of-life experience has involved a plethora of communities (schools, churches, workplaces, community centres, hospital, local hospice, youth groups and voluntary organisations). In Plymouth, there has been a focus on people who are homeless or in prison, and on improving death literacy through an education programme for children and their families. In Spain, the city of Vic developed a plethora of different activities (e.g. cultural initiatives, training, informative events) and has shown high participation and satisfaction of participants. In Germany, the city of Cologne started working on the development of compassionate community project in 2018, with a participatory round table open to all interested stakeholders (PHPCI, 2022[93]). Furthermore, in the United States the Conversation Project distributes free material online to learn about end-of-life care and end of life conversations and Costa Rica has developed a network of day centres and volunteer teams (The Economist Intelligence Unit, 2015[40]). More recently – in 2020 – Bruges became the first compassionate city in Belgium and organised a festival of compassionate communities in September 2022, hosting a selection of cultural activities to raise awareness around death and dying (End of life care research group, 2022[94]).
In some countries, national non-governmental organisations are playing an important role in the development of compassionate communities across the country. This is the case of Compassionate Communities UK, a charity that aims at supporting communities to build compassion by providing guidance through a consultancy service, offering education programmes, providing support and expertise to plan and manage projects. Since the onset of the COVID-19 pandemic, Compassionate Communities UK also provided specific guidelines to develop compassionate neighbourhoods during a pandemic (Compassionate Communities UK, 2022[95]). In Canada, the non-profit organisation Pallium Canada engaged in accelerating the creation of compassionate communities across Canada. Pallium Canada provides information and guidelines regarding compassionate communities, provides a toolkit to start new compassionate communities and an evaluation toolkit to measure the impact of such communities. They also set up the compassionate communities’ exchange, an online space where members of compassionate communities can meet and exchange to learn from each other (Pallium Canada, 2022[96]).
3.3.3. Incentivising recurrent conversations between patients and clinicians and recording care wishes in advance
Evidence suggests the importance of communication between the person near their end of life and health care workers. People associate more and more a personalised EOLC with high quality of the end of life. Involving the dying person, listening to their needs, and considering them in care choices are associated with good end-of-life care (The Choice in End of Life Care Programme Board, 2015[97]). Engaging in ACP conversations helps patients and their family and friends to better face the end of life, experiencing less anxiety and depression and being better prepared for the event of death (Kononovas and McGee, 2017[29]). It also reduces clinicians’ distress. A survey in France explored the willingness of general practitioners to talk to patients about ACP as well as helping them in writing their advance directives. 90% of respondents declared to be willing to help patients writing advance directives and 74% recognise this practice as helpful for patients (Hubert et al., 2019[98]). Despite the willingness to talk about the end of life, this rarely happens in practice, as mentioned previously in this chapter. The lack of EOLC conversation spans across all settings of care and the barriers are similar and often related to the lack of preparedness of health care professionals around EOLC. Preparing individuals, relatives and informal carers for the changes that will accompany illness progression into the end-of-life phase, undertaking advance care planning and shared decision-making facilitates care (Waldrop and Meeker, 2012[99]). Patients also benefit by receiving fewer intensive treatments, receiving care in line with their wishes, and dying in their preferred place of death (Silveira, 2022[20]). For patients with dementia or neuro-degenerative diseases, being able to plan care before losing decisional power due to their condition, is essential to choose for themselves and to choose a proxy person who will make decisions on their behalf when they are no longer able to.
Regulation and guidelines on end-of-life care conversation and shared decision making are important, but not sufficient
Among OECD countries, the majority (81%) report having regulations, guidelines or both requiring people and their families have ongoing conversations with health professionals regarding their health status and health care options, as well as being involved in the decision-making process regarding their end of life (Figure 3.14). More precisely, eight countries (Denmark, Estonia, Greece, Lithuania, Norway, Mexico, Slovenia, and the United States) have regulations, five countries (Belgium, Japan, Norway, the Netherlands, and the United Kingdom (England)) have guidelines and eight countries (Costa Rica, France, Hungary, Iceland, Italy, Latvia, Poland, and the United Kingdom (England)) have both regulations and guidelines on these topics. In Australia, Canada and Sweden, the existence of such regulations and guidelines may vary by region/area. New Zealand has guidelines on end-of-life care decision making, which include guidance for health care staff to navigate decision making on children and young people, hydration, and nutrition choices, drafting of advance directives, withholding, and withdrawing treatments, as well as resolution of disputes with patients and families (NSW government, 2021[100]).
Source: (OECD, 2020-2021[16]).
Figure 3.15 shows that most OECD countries (77% of surveyed countries) also have regulation regarding the designation of an attorney for decision making, who would step into decisions regarding the patient’s care when the latter loses the ability to understand and decide for themselves. Although studies have shown sometimes weak alignment between the preferences of the person at the end of life and their attorney, the designation of the proxy person is still the best option available when the person loses the ability to make decisions for themselves. The designation of an attorney/proxy person becomes particularly important in case of a health care dilemma that was not foreseen during the advance care planning phase (Silveira, 2022[20]). All countries with available data have legislation and 17 out of 27 have some guidance on ACP. A much lower share of countries reports some form of training or workshops on ACP for professionals (6 out of 27) or governmental initiatives (Central or local government) on ACP (4 out of 27). More information on which countries have legislation, governmental initiatives, guidelines and/or training on ACP is reported in the annex.
Source: (OECD, 2020-2021[16]).
Some countries have programmes supporting individuals in the communication and decision making regarding their end of life. Evidence has shown that such programmes improve the quality of the decision making. One example of a successful programme is “Respecting Choices”, adopted by health systems in Australia and the United States, which has improved the alignment between the person at the end of life and the designated proxy person. Another successful example is the “Prepare for Your Care” programme, which has proven to increase the use of ACP (Silveira, 2022[20]). The United States have implemented a system of financial incentives for physicians whose patients complete advance directives. Studies have shown a modest increase in the completion of directives following the introduction of such an incentive (Barnato et al., 2017[101]). Nevertheless, public opinion does not seem to be particularly in favour of physicians’ financial incentives for advance care planning. Financial incentives for patients who complete advance care planning seems to attract more favourable opinions (Auriemma et al., 2016[102]).
Nevertheless, conversations at the end of life are still an underused practice because of several barriers. Qualitative research over end-of-life conversation in long-term care facilities has shown that the attitude of family members towards talking about death and the lack of awareness from the health care side regarding patients’ wishes and needs are among the barriers to EOL conversations (Harasym et al., 2020[28]). Furthermore, a review of studies performed in Australia, Canada, the Netherlands, New Zealand, Norway, Sweden, and the United States has defined a set of prerequisites of shared decision-making. Such set includes interdisciplinary teamwork, with health care professionals providing a reasonable number of alternatives among which the patient can choose without feeling overwhelmed. Health care professionals also need to establish open communication and try to understand people’s willingness to talk and get a good understanding of their preferences. Overall, a good and trustworthy patient-health care professional relationship is important to ensure that health care professionals truly understand people’s preferences and that the patients feel well supported and understood. A favourable environment, with adequate space and time and ensuring the privacy of the person also appears to facilitate end-of-life care discussions (Kuosmanen et al., 2021[103]). These findings confirm that to improve communication on EOLC, the availability of good training is key. Guidelines are necessary for health care workers on how to assist the decision-making process for individuals and their families on an individual’s health and care in the final stages of their life. This should stress the importance of appropriate information and explanations provided by medical professionals, with the individual having sufficient and ongoing discussions to take a decision before proceeding with medical care in the final stage of life. Findings have shown that people with dementia tend to prefer starting conversation earlier on in the disease progression, while cancer patients prefer to postpone conversation until when there is no other care possibility. Such differences exacerbate the challenge of understanding the right moment to start conversation for clinicians.
Health care professionals would benefit from better training on end-of-life care conversations
Training would help clinicians understand how and when it is appropriate to start conversation with different patients, based on their preferences and the trajectory of disease (Hall, Rowland and Grande, 2019[43]). Surveys of Japanese doctors further demonstrate the importance of improving end-of-life care training. Among the doctors interviewed in a survey undertaken in Japan, those who received and completed end-of-life care training were more likely to use ACP (Tamiya, 2018[34]). Nurses and ancillary staff can play a big role in improving the communication with patients, building upon the trustful relationships they can install with patients, often in a closer and more informal way than doctors can do (Kononovas and McGee, 2017[29]).
Improvements in the quality of training would also be beneficial. Some studies have highlighted that when training is available, not much effort is made to ensure its quality, with patients and families rarely involved in the development of training. These trainings often lack outcome measurements, with the impact of training on patients and families rarely assessed, a lack of control groups utilised, or follow up (Lisa Jane Brighton, 2017[104]).
Simulation-based learning experiences are increasingly used to teach communication on end-of-life care to nursing students, nursing practitioners and other health care professionals, although assessments of their effectiveness are still limited. This type of training aims at reproducing real-life scenarios to allow trainees to practice communication skills as much as possible before facing patients. The aim is to improve their communication skills and reduce the anxiety that health care workers face during end-of-life conversations. The simulation can take place within several scenarios (e.g. workshops, lectures, gaming sessions, group sessions) and in several forms, such as the use of manikins, actors and role playing. A systematic review of studies on simulation-based learning experiences found that while some studies proved this training effective and preferrable to standard training, more evidence is needed to validate these positive results and promote the further spread of simulation based training (Smith et al., 2018[105]).
Examples of training regarding end-of-life conversations already exist for medical and nursing students. In the United States, several medical schools are developing specific training programmes on end-of-life care and with specific focus on undertaking end-of-life care conversations. The Universities of Washington, Pittsburgh and Duke developed the Oncotalk training programme, which has trained between 15% and 20% of the nation’s oncologists over 5 years. The training focuses on conversations regarding care status and palliative care choices. In addition to in person training, researchers are currently developing an online tool that allows people to describe real life experiences and receive feedback on how to best approach them (Commonwealth Fund, 2022[106]). In Canada training on advance care planning is available for public education at the national level (Government of Canada, 2019[107]).
Several training programmes on end-of-life care conversations for health care workers also exist in several countries, including Australia, Canada, New Zealand, United Kingdom, and the United States. The Vital Talk community is an example of available online and in-person training for clinicians approaching EOLC conversations (VitalTalks, 2022[108]). Australia funds the Indigenous Program of Experience in the Palliative Approach, which provides training to the workforce to support them in the delivery of culturally responsive palliative care. IPEPA also provides palliative care training to Aboriginal and Torres Strait Islander workforce and spreads knowledge around palliative care among the Aboriginal and Torres Strait Islander communities (IPEPA, 2022[109]). Furthermore, the End-of-Life Directions for Aged Care (ELDAC) developed guidelines to support long-term care providers in the provision of culturally appropriate end-of-life care among older Australians (i.e. for Aboriginal and Torres Strait Islander people, culturally and linguistically diverse people and LGBTQI+ people) (ELDAC, 2022[110]). Canada also has several training options, some of which may differ across provinces. For instance, general end-of-life care guidelines are available for nurses at the national level. Canada also issued a reference guide for clinicians to support them in conversation regarding serious illness. The Canadian Hospice Palliative Care association also provides training opportunities for volunteers, including webinars and online training programs. Alberta, Nova Scotia, and Ontario provide additional opportunities of training for health care workers (Government of Canada, 2019[107]). In New Zealand, NSW health provides online training modules for health care workforce to improve knowledge around end-of-life conversations (NSW government, 2021[100]). In the United Kingdom, the Helix Centre has developed a form that guides the conversation on end-of-life care between professionals and patients, the ReSPECT process. The guide is easy to understand and makes use of graphics to clarify concepts and make them understandable for all patients. The centre also developed a web-based app that provides training for all professionals using the ReSPECT process. The process has been implemented in more than 130 centres across the United Kingdom and Ireland (ReSPECTprocess, 2022[111]). Furthermore, a collaboration between NHS England and NHS Improvement developed the Universal Principles for Advance Care Planning in 2022, to facilitate a consistent national approach to advance care planning in England (NHS, 2022[112]).
Specific training on culturally and ethnically appropriate conversation should be encouraged and might contribute to reducing inequalities at the end of life
Clinicians are required an effort to understand and adapt to the patients’ preferences, understanding their ethnic and cultural diversity. Providing the same EOLC services to all patients, regardless their cultural and ethnic background is often perceived as equal, but it might not ensure equity, as it does not consider the specificities of the person and their specific needs. Communication training and guidelines on how to approach end of life discussion with ethnically and culturally diverse communities could be useful to help shaping the right approach to discussion, based on the patients’ needs. It would make end-of-life-care more people-centred, improving the end-of-life care experience of ethnic and cultural minorities. Including bilingual team members or interpreters within end-of-life care teams has also proven successful in this regard (Isaacson and Lynch, 2017[54]). Some studies from Australia and the United States on training on cultural appropriateness in health care have found that trained professionals showed higher awareness of cultural differences at the end of life and improvement in the management of culturally sensitive discussions – including end-of-life-care conversations (Cruz-Oliver et al., 2017[113]; Northam et al., 2015[114]). Further studies on the effectiveness of such training and on the best approaches to culturally teaching appropriateness in health care would be beneficial to form a solid evidence base to lead the development of further training in a larger set of countries.
In the United States, the National Hospice and Palliative Care Organisation (NHPCO) provides guides and toolkits for EOLC providers to improve the way they deal with minorities. The guides that include outreach guides for Black people, Chinese Americans, and Hispanic/Latino people, provide insights on cultural values that are shared within minority communities. They point out to particularly sensitive issues and provide recommendations around how to engage with the communities, for instance by organising events, participating to the community’s events, and using their media to dive into the culture. Furthermore, NHPCO provides consumers’ brochures in English, Spanish and Mandarin to provide support to the people at the end of their life and their loved ones (NHPCO, 2021[115]). The NHPCO also published a position paper in 2020, to support American Black Communities at the end of life in the framework of the COVID-19 pandemic (NHCPO, 2020[116]). The paper describes the mental health repercussions of restrictive measures aiming at reducing the spread of the virus on American Black Communities, for instance through the prohibition of religious ceremonies to honour the dead body of loved ones. The paper is at the same time an occasion to share information around cultural and spiritual needs of such communities and to raise awareness around the disparities in access to EOLC. It also provides guidance on how to address such disparities.
Multidisciplinary conversations would reduce discontinuity of care and disagreements on end-of-life decisions
Besides good training, clinicians approaching discussion around end-of-life with patients and their relatives must be well aware of the patient’s health status and history. It is in fact paramount that patients and their clinicians establish a trustful relationship to get involved into a shared decision-making process. Gathering information regarding what other involved clinicians recommended is key to avoid providing the patient with confusing and conflicting information.
Being well informed about the patients’ history and their relationships with other professionals become particularly complex when patients have co-morbidities or complex conditions. For instance, professionals working with patients affected by heart failures attributed aggressive and non-beneficial care to failures in the communication across physicians (Hutchinson et al., 2020[117]). Studies have found lower care co-ordination at the end of life, which leads to higher costs of care and more aggressive care (Hafid et al., 2022[37]; Sharma et al., 2009[38]).
Furthermore, end of life decision-making covers a diverse set of choices. A review of studies performed in Australia, Canada, Netherlands, New Zealand, Norway, Sweden and the United States found that people at the end of life wish to participate in a number of decisions regarding their end of life, which span from choosing the place of death and selecting what treatment to receive, to saying goodbye to their loved ones and organising follow up care after death (Kuosmanen et al., 2021[103]). Organising a multidisciplinary conversation can thus be useful. Involving different experts in the conversation can ensure that patient’s needs, and wishes are considered holistically (Mark Pfeifer, 2018[118]). This is particularly important for some people (e.g. people with dementia) who might present comorbidities and have contacts with different care providers. In a multidisciplinary effort, ensuring that one professional is responsible to co-ordinate care for the patient could avoid discontinuity of services and disagreements around end-of-life decisions (Bamford et al., 2018[6]).
As decision making at the end of life is a continuous process that develops with the person’s health status, the health care workers involved in this process might also vary and alternate when needed. In the early stages, trained non-physicians can facilitate and initiate advance care planning in either health care or non-health care settings, building on established relationships with the individual. Physicians then need to step in and support decision making regarding health care procedures. According to a consensus building exercise on the definition and recommendations regarding advance care planning, 91% of professionals agree that trained non-physicians can be functional in supporting advance care planning, particularly in the initial stages (Rietjens et al., 2017[119]).
3.3.4. Patient reported measures can be used to measure the quality of end-of-life care conversations
To make sure that EOLC conversations improve the quality of life of the patient and provide them with care in line with their wishes, the quality of such conversations needs to be measured through indicators (Sinuff et al., 2015[120]). Including questions regarding conversations with clinicians within Patient Reported Experience Surveys (PREMS) can serve this scope. The 2015 Quality of Death Index Ranking palliative care across the world measures the existence of the option for Do Not Resuscitate (DNR) policy and whether shared decision-making is applied (Murray, 2015[18]).
Among surveyed OECD countries, seven out of 12 included questions around EOLC discussion within PREMS. In Iceland, surveys target relatives who have lost a loved one in the two to three months prior the survey. Questions are asked about whether the deceased person had discussed their preferences around the place of death. Results of the survey showed that most patients did not discuss their preferences of place of death. Results from the latest survey available, in 2021, focused on people in Palliative Home Care Services and reported that 74% of patients (N=99) did not discuss their preferences. Among those who expressed their wishes, 64% preferred to die at home and 36% in palliative care units (OECD, 2020-2021[16]). In Ireland, in 2016, the survey “Have your say” was conducted online and included 3 000 respondents. It included questions regarding conversation at the end of life. Results from the survey showed that people recognise the importance of receiving information regarding their end of life and of being involved in the decisions regarding their death and dying. In addition to the survey, as part of the “Have your say series”, relatives of deceased or dying people have access to a free bereavement support phone line (Irish Hospice Foundation, 2016[121]). Ireland developed other surveys on EOLC since 2010, but questions regarding end-of-life conversations are missing. In 2017, in Japan, a survey aimed at measuring attitudes on the end of life asked a random sample of 23 500 adult Japanese (aged 20 or older) whether they had discussed their EOLC preferences with their families and/or with professionals.
Some countries apply international surveys that include questions regarding EOLC discussion. This is the case of Canada, which used the Commonwealth Fund’s 2017 International Health Policy Survey of Older Adults. Norway used the CODE international survey in 2017-18 and the United States use the abovementioned CAHPS Hospice Survey since 2015.
The measurement of the quality of communication at the end of life needs to be prioritise as a method to assess how people-centred EOLC is. The current situation shows room for improvement across OECD countries. Chapter 4 of this report will provide more information regarding the use of specific EOLC PREMS in OECD countries.
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Notes
← 1. This report conceptualises end-of-life care (EOLC) 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. Palliative care entails physical, emotional, social, and spiritual support with a particular emphasis on symptoms management such as pain, but also emotional support, mental health care and bereavement care for families.
← 3. Similar results emerge from staff who were asked to rate the quality of care. Nearly 70% of respondents rated care as excellent or very good.
← 4. The United States reported seven professional associations, but a comprehensive list is currently not available, hence they are not reported in Figure 3.13.