4. Renewing focus on high-quality end-of-life care
This chapter analyses the quality of end-of-life care across countries. It shows that people at the end of life suffer from an array of physical, psychological, and spiritual symptoms that are not always adequately addressed. Efforts to sustain life may sometimes result in overtreatment and not be beneficial for quality of life. To improve quality, the chapter highlights that symptoms should be adequately managed balancing measures to minimise the misuse of opioids and reducing barriers to pain relief for those with high needs, while also providing holistic care that encompasses all physical, psychological, and spiritual symptoms. Supporting professionals and families to overcome ethical dilemmas and make difficult decisions can reduce the risk of overtreatment and align care with people’s needs. Improving care guidelines, quality standards and indicators and their monitoring would contribute to better assess the quality of end-of-life care services and allow for international benchmarking.
Providing high-quality care to those who need it is a core principle of high-performing health and social care systems, and end-of-life care is no exception. Quality end-of-life care (EOLC)1services should allow dying patients – and their families and loved ones – to best prepare for the end of life and to experience a good death, one which relieves their pain to the maximum extent possible and takes into account and accommodates their preferences, including where they die and what treatments they receive. High-quality end-of-life care is also important to ensuring families and loved ones can best come to terms with and process the loss of their loved one.
In many countries, high-quality end-of-life care remains accessible to too few but expanding access to end-of-life cannot come at the expense of quality. Health and social care systems that deliver end-of-life care must have mechanisms in place to ensure the end-of-life care people receive is of consistently high quality, complemented monitoring systems for driving further improvement.
This chapter offers a review of the current state of the quality of care for people receiving palliative and end-of-life care services, including the extent to which people experience pain, discomfort, and mental distress at the end of life, the kinds of care they receive, and decisions around choosing to provide or withhold life-sustaining treatments when the end is near. It looks at how ethical dilemmas and disagreements on care choices can be dealt with and how guidelines and standards affect the quality of end-of-life care. The chapter further examines how the quality of end-of-life care is measured and monitored across different OECD countries, including the extent to which patient- and carer-reported measures are systematically incorporated into regular data collections and monitoring.
The chapter is organised as follows. Section 4.1 highlights the sub-principles of high-quality end-of-life care. Section 4.2 illustrates the consequences of current health systems lacking such focus while 4.3 explores policies and best practices to ensure appropriate, comprehensive, and accountable end-of-life care.
People at the end of life do not always receive appropriate symptom relief. People can experience high levels of emotional distress, depression, and anxiety at the end of life, yet adequate psychosocial support at the end of life is also lacking. The share of people experiencing emotional distress is more than double among older people with high needs compared to older people without them. Only 14 of surveyed countries include psychologists within EOLC multidisciplinary teams and 7 included psychotherapists. The rise in opioid abuse has in some cases led to a decrease in the prescription of opioids and exacerbated the challenge to access pain relief at the end of life. Around 8% of people who died at the age of 65 or older reported receiving too little pain medication, around 15% too little help breathing and 24% too little help with anxiety.
Alongside the under-treatment of their symptoms, people at the end of life sometimes receive aggressive treatment that is not likely to provide comfort, prolong life or be cost-effective. Around one-third of older patients with advanced irreversible diseases who are hospitalised at the end of life receive interventions unlikely to provide benefits in terms of survival or quality of life. Data shows that across all countries for which data is available, 22% of patients were readmitted within 30 days from discharge during the last year of life, between 30% and 65% of people visited emergency department during the last 30 days before death and patients were admitted more than once to ICU in the last 30 days of life.
Policy options
Countries should balance the need to fight opioids abuse with that of ensuring that people can experience a comfortable life until the end. Measures could aim at increasing the pool of health care professionals who can prescribe pain relief medications, together with an improvement in the training and clinical guidelines on the use of opioids. For instance, the United Kingdom has increased the availability of prescribers by giving non-medical professionals (e.g. specialist nurses and pharmacists) the possibility to prescribe pain relief, while in Canada palliative drug programs have been put in place in several territories and provinces.
Training for health care professionals, early provision of palliative care and advance directives appear to reduce the likelihood of overtreatment and aggressive care at the end of life. The United States have developed the Physician Orders for Life-Sustaining Treatment (POLST), which has proven to align the care received to people’s wishes. When difficult decisions need to be made, guidelines, ethical consultations or ethics committees can support health care professional through the decision-making process. In Australia and Canada there are guidelines to support health care professionals through decision making regarding withholding and withdrawing treatment and in case of disagreement with patients and/or their families. Ethics committees in France offered phone line services during COVID-19.
Comprehensive services need to be available for all patients and their relatives. For instance, in England, guidelines report the importance of multidisciplinary teams that can take care of the person at the end of life holistically and they underline the crucial role played by advance care planning and electronic records sharing within the multidisciplinary team. It is also important to address the needs of relatives during and after the end of life. In Ireland, the Irish Hospice Foundation has set up a help line – the Bereavement Support Line – available to support people facing grief.
Ensuring that people receive high-quality end-of-life care also requires that quality guidelines and standards are set, measured, and monitored. While 63% of countries have quality standards, they are rarely binding and they are rarely internationally comparable, nor linked to measurable indicators. Some countries have more advanced indicators collection, such as the United States and Denmark, but usually focus on measuring access to services rather than the experiences and outcomes of those services, or they are limited to specific services or providers. Less than half of the surveyed countries have mandatory patient- or carer-reported experience or outcome surveys to help inform the quality of end-of-life care. Furthermore, more than one in four countries do not have programmes of audit and evaluation to monitor quality.
What constitutes high-quality end-of-life care has been subject to extensive debate and policy scrutiny by researchers and policy makers across OECD countries. The OECD People-Centred End of Life Care Framework (see Chapter 1) identified three domains applicable across end-of-life care – regardless of where it is delivered – that are critical to ensuring the delivery of high-quality end-of-life care.
Firstly, care must be delivered in a manner that is appropriate to the circumstances and preferences of the patient – and in many cases their families and carers – nearing the end of life. Allowing patients to receive adequate symptom control to help maximise their comfort and well-being at the end of life. In too many circumstances, patients nearing the end of life still lack access to adequate pain relief (Knaul et al., 2018[1]). Even in circumstances where supply constraints do not represent a major challenge, policies put in place by governments to help prevent excessive opioid consumption and addiction can complicate access to pain relief even where such treatments could be made widely available. Furthermore, ethical dilemmas and disagreements between patients and clinicians, families and clinicians or patients and their families can complicate decision making at the end of life, risking providing inappropriate care to the dying person.
Care must also be comprehensive, taking into account all the needs of the person at the end of life and their relatives. The end of life represents a mentally distressing moment for the dying person and their relatives, and multidisciplinary teams have proven to improve continuity of care and hospital discharge (NICE, 2019[2]), but only a minority of countries report including psychologists and psychotherapists in EOLC multidisciplinary teams. Addressing the psychosocial and spiritual needs of people at the end of life is particularly important given that mental health worsens at the end of life and people might experience a loss of meaning in life (Kozlov et al., 2019[3]; Mossman et al., 2021[4]; Wilson et al., 2007[5]). Furthermore, bereavement care improves the families’ experience of the end of life, but several barriers still hamper its provision (McAdam and Puntillo, 2018[6]).
Lastly, quality of care cannot be assured – or improved upon – if the delivery of care and services are not held accountable, through the development of clear standards, the collection of relevant indicators and regular monitoring, inspection, and regulation of end-of-life care services. While many countries have developed standards of care and guidelines for the delivery of end-of-life care, these guidelines and standards are not always accompanied by metrics that are routinely monitored to ensure the end-of-life care people receive lives up to them. Moreover, despite the importance of appropriate and patient-focused care at the end of life, the routine collection of patients- and carer-reported measures, including on their experiences and outcomes, is often ad hoc where it is collected at all.
4.2.1. Symptom relief is not always sufficient
When people reach the end of their life, they often experience symptoms that span from physical suffering to psychological and spiritual distress (Knaul et al., 2018[1]). Mental ill health and lower quality of life are also common among the relatives of the dying person (Götze et al., 2016[7]; Kustanti et al., 2021[8]). Nevertheless, evidence highlighted below shows that symptom management is often insufficient. Access to pain relief is unequal, with symptoms management showing unequal distribution across countries, settings of care and disease type and, while acute shortages are a concern in low and middle income countries, lack of access has also been signalled in many OECD countries (Knaul et al., 2018[1]; ONS, 2015[9]; Reid et al., 2020[10]). Concerns also exist on symptoms management in older people (Dalacorte, Rigo and Dalacorte, 2011[11]; Fineberg IC, 2006[12]). Unmet needs of psychosocial and spiritual support for people at the end of life and their relatives are also common across the OECD (OECD, 2020-2021[13]).
Prevalence of physical, psychological, and spiritual discomfort is high at the end of life
Patients experience a wide variety of physical, psychological, and spiritual symptoms at the end of life. Half of the people who die in high middle-income countries and high-income countries experience serious health related suffering (Knaul et al., 2018[1]). A systematic review including studies from 20 OECD countries shows the prevalence of physical, psychological, and spiritual symptoms for patients with cancer, chronic obstructive pulmonary disease (COPD), chronic heart failure (CHF), end-stage renal disease (ESRD), dementia and AIDS (Table 4.1). Weakness, appetite loss, nausea/vomiting, pain, dyspnoea, and insomnia are frequent physical symptoms in the advanced stage of life-threatening diseases, such as cancer, COPD, CHF, and dementia. For instance, up to 100% of people living with cancer or ESRD can experience fatigue and weakness towards the end of life. Between 30% and 98% of people with cancer or AIDS report physical pain. Furthermore, Etkind et al. calculated for 67% of people dying for diseases classified as organ failure2 experience pain requiring physical care, while this amounts to 84% for people with terminal illness and 60% for people with dementia (Etkind et al., 2017[14]).
The end of life can be an emotionally distressing moment, which affects the mental health and overall well-being of people at the end of life and evidence shows that mental health deteriorates towards the end of life. Depression, anxiety, and worry are common among people with COPD, dementia, and AIDS, while spiritual symptoms seem to be assessed mainly among people with cancer (Moens, Higginson and Harding, 2014[15]). Another study focused on people with metastatic cancer found that around 24% of patients experienced depression and 27% anxiety disorders (Mossman et al., 2021[4]), while an analysis of palliative cancer patients found that around 21% of the sample experienced depression and around 15% anxiety disorders (Wilson et al., 2007[5]). The 2017 Commonwealth Fund International Health Policy Survey of Older Adults reveals that overall emotional distress in older adults is much higher for those with high-needs, namely having three or more chronic conditions or a functional limitation, compared to non-high-needs. The share of people with emotional distress in 11 OECD countries ranges between 7% and 17% in older people without high needs, while it is much higher among older people with high needs, ranging between 15% and 40% (Figure 4.1). A study performed on a population-based survey explored the trajectory of depression over the last year of life and showed the increase in depressive disorders during the last period of life. Symptoms of depression increased gradually from 12 to 4 months before death and more sharply in the last 4 months of life. In the last month before death, nearly 60% of the surveyed sample had depression (Kozlov et al., 2019[3]).
Note: Emotional distress includes anxiety or depression in the past year. Population: High-need older adults are defined as having three or more chronic conditions or a functional limitation. Asterisk (*) indicates that the differences between high need and not high need are significant below p<0.05.
Source: (Commonwealth Fund, 2017[16]).
Family members and relatives also experience mental ill health and lower quality of life during the end of their loved ones’ life. A study assessed the results of the Palliative Care Outcome Scale, an international instrument to measure the quality of life of patients at the end of life and their relatives. It looked at results for a sample of adult Portuguese palliative care patients screened between 2015 and 2016 and found family anxiety, patient anxiety and feeling depressed to be the most overwhelming symptoms for respondents (Antunes et al., 2020[17]). In Canada, 30% of family caregivers for palliative care reported distress (e.g. anger and depression). Distress appeared particularly high in caregivers of dementia patients (45%) and lower in caregivers caring for people that do not receive palliative care (27%) (CIHI, 2018[18]). Further research has found that around 20-30% of family caregivers experience psychological distress at the end of their relative’s life, followed by a slight decrease in the psychological distress after the person’s death. More broadly, family caregivers show a significantly lower mental health and a somewhat lower physical health compared to the general population (Götze et al., 2016[7]). A meta-analysis of studies on the grief disorders in families of cancer patients recorded that between 7% and 39% of participants experienced grief disorders (Kustanti et al., 2021[8]).
Physical and psychological needs at the end of life are not always met. According to the Survey of Health, Aging and Retirement in Europe, across 28 European countries (including 23 OECD countries), on average around 8% of older people who died at the age of 65 or older reported receiving too little pain medication, around 15% reported receiving too little help breathing and 24% reported receiving too little help with anxiety (Figure 4.2).
Lack of access to medications to manage symptoms represents a challenge in some countries and for some groups
Ensuring that physical symptoms are treated adequately entails to find a balance between minimising the misuse of opioids among the general public and ensuring that there is sufficient pain relief for those with high needs. Across all ages, analgesic opioids appear to be far more used than benzodiazepine and dopamine receptor antagonist in the last 30 days of life (Table 4.2). Benzodiazepine is used to treat dyspnoea or anxiety, while dopamine receptor antagonist is used to prevent nausea. Analgesic opioids are one of the main medications to relieve pain, highlighting that this is more widely prescribed at the end of life than medication to relieve other symptoms.
There are concerns around possible under treatment of pain at the end of life for older patients (Dalacorte, Rigo and Dalacorte, 2011[11]; Fineberg IC, 2006[12]). Specific medication use illustrates that older adults receive fewer pain-relieving medications when looking the defined daily doses (DDDs) in the last 30 days before death (Table 4.2). Although DDDs per 1 000 population report much higher values for older populations, this gap disappears or overturns when DDDs are standardised by the number of deaths. In particular, the rate of DDDs per number of deaths due to cancer, cardiovascular diseases, chronic respiratory diseases, Alzheimer’s, and other dementias is lower in people aged 60 or older, compared to the 40-59 age group.3 Such difference could partly be explained by a more common quick deterioration process among older people.
While opioid abuse has become a major challenge across OECD countries in recent years, prescription volumes fell on average between 2012 and 2020 (OECD, 2019[20]). Considering opioids prescriptions among people aged 70 or older as a proxy of opioids prescription at the end of life, Figure 4.3 shows that DDDs for people aged 70 or older per 100 population per day have decreased in all countries with data available in the past decade, except for Estonia.
The troubling rise in opioid abuse and opioid-related deaths across many countries also masks what remains a reality for people in need of palliative and end-of-life care: the availability of critical pain-relieving medications, including morphine and other opioids, is highly unequally distributed worldwide. Some OECD countries are not yet able to satisfy their national needs. This is the case of Latin American countries, as Mexico where availability of opioids morphine-equivalent is able to meet only 36% of the needs. Some Central and Eastern European countries and Asian countries also show low levels of opioids’ needs being met (Knaul et al., 2018[1]).
The setting of care and cause of death also seem to influence pain relief. In the United Kingdom, 63.5% of people in hospices declared receiving pain management when needed during the last three months of life, compared to only 18.6% of people at home. Around 8% of people receiving care at home reported not receiving any pain relief in the last three months of life, compared to 1.4% in hospices. Pain relief in care homes and hospitals appears to be somewhere in between, with respectively 42.7% and 39.7% of people reporting receiving pain relief when needed in the last three months of life. Cancer patients reported higher levels of pain relief compared to people with cardiovascular diseases or other diseases (ONS, 2015[9]). Similar results also come from New Zealand, where 71% of people in hospices, 69% in hospital and 61% in aged residential care facilities reported complete pain relief in the last three months of life, compared to only 17.5% of those at home (Reid et al., 2020[10]). Several randomised controlled trials showed that early referral to palliative care specialists can improve symptoms management and overall quality of life in people with life-threatening conditions (Hui, Heung and Bruera, 2022[21]).
Unmet spiritual and psychological needs are still common
Spiritual and psychosocial support are often lacking. A study from the United Kingdom, measuring access and adequacy of such services among adults at the end of life, reported that most patients did not consider the psychological services to be adequate. While most of the analysed hospices reported having in-house complementary therapist, spiritual advisor, and counsellor, only a minority have in-house clinical psychologists (19%) and counselling psychologists (9%). Hospices often also reported inadequate staff capacity and long waiting lists (McInnerney et al., 2021[22]). According to the VOICES survey for bereaved families in the United Kingdom, while nearly 70% of people agreed that the patients’ emotional needs were addressed,4 only nearly 59% of people reported that religious and spiritual support was provided. Furthermore, while 75% of people reported that emotional support was provided at home, only 60% reported so in hospitals (ONS, 2015[9]). Evidence from 2013 reported that less than half of the bereaved people who wanted to talk to health care professionals about their feelings manage to do so (Thomas, 2021[23]). While two-thirds have policies or programs that address the psychological, social, and spiritual needs of the people at the end of life, 15% of countries address at least some of those needs and in 18% such policies might vary within the country (Figure 4.4), only 14 reported including psychologists within EOLC multidisciplinary teams and only 7 included psychotherapists. Lack of spiritual support is associated with lower satisfaction with end-of-life care (O’Brien et al., 2018[24])
Source: (OECD, 2020-2021[13]).
Although patients would like to have their spiritual needs addressed, professionals do not always support them. According to a literature review, the reasons for this lack of support are related to lack of knowledge and training around spiritual care, fear of imposing personal religious beliefs and the feeling that spiritual care is not part of health professionals’ tasks. Such barriers appear to be overcome when professionals are more informed regarding EOLC and spiritual care specifically (Evangelista et al., 2016[25]). Spirituality is a complex concept that goes beyond religion and the share of people defining themselves as religious and/or spiritual is changing over time. While both religion and spirituality are related to questions of meaning of human life, religion entails some connection with the transcendent, which is not necessarily included in the definition of spirituality (Lazenby, 2018[26]). Knowing about religion, spirituality and their differences is important for professionals working in end-of-life care. Evidence shows that training can play an important role in helping health care workers recognising the importance of spiritual care and improve the quality of spiritual and psychosocial support as part of end-of-life care (O’Brien et al., 2018[24]).
Bereavement care and follow ups after death seem to have a positive effect on the well-being of decedents’ relatives but there is some evidence of unmet needs among bereaved family caregivers. Receiving bereavement care is associated to lower cases of prolonged grief and posttraumatic stress disorder (McAdam and Puntillo, 2018[6]). According to a study on family caregivers caring for people receiving palliative care, more than 50% of bereaved caregivers report unmet needs, particularly related to hope and symptom management (Ullrich et al., 2020[27]). Similarly, to the provision of spiritual care for people at the end of life, bereavement care faces several barriers on the health care professionals’ side. Professionals express lack of knowledge and skills, together with frustration, discomfort and helplessness when dealing with bereavement care. Once again, training has proven effective in reducing the emotional barriers and burnout, while increasing feelings of self-efficacy and compassion satisfaction (Fan and Lin, 2021[28]).
4.2.2. Efforts to sustain life can lead to overtreatment at the end of life
In end-of-life care literature, overtreatment is defined as a medical intervention that is extremely unlikely to help a patient, that is, because it does not improve survival but there are potentially harmful effects. While overtreatment is challenging to measure because inaccuracies in survival probabilities, the literature has identified certain proxies to measure it and serve as potential indicators for quality. This section highlights data collected for such indicators piloted by the OECD which include, having repeated hospital admissions in the last 30 days of life, ICU admission and emergency department visits in the last 30 days of life, as well as receipt of chemotherapy within 30 days before death.
Hospital readmissions, emergency department visits, and ICU admissions during the last year of life are relatively high in some countries
While some hospital admissions at the end of life might be scheduled, emergency department visits, frequent hospital readmissions and admission to intensive care units close to the end of life are often avoidable and may result from a lack of access to community-based care. In countries where community-based palliative care is available, evidence suggests that patients who had received palliative care earlier were less likely to have multiple visits to the emergency room and less likely to be admitted into the intensive care unit in the 30 days before their death, compared with those who had not received palliative care, or received it closer to the end of their lives (Canadian Institute for Health Information, 2018[29]).
Table 4.3 indicates that, on average, 22% of patients were readmitted within 30 days from discharge during the last year of life, with wide variation across countries. Readmission rates in Slovenia and Switzerland are significantly higher than in other countries, while Lithuania’s readmission rates are significantly lower than other countries. People who died due to cancer were more likely to be readmitted in their last year of life, compared to other causes of death, particularly in Slovenia and Switzerland.
Resource-intensive care within hospitals at the end of life, including admission to an intensive care unit (ICU), can also be an indicator of overall quality of health care delivery as it carries the risk of the patient receiving poor quality of EOLC and poor co-ordination and planning of follow-up care after discharge (Overbeek et al., 2017[30]). ICU interventions may include endotracheal tubes, intravascular lines, feeding tubes and restraints may reduce mobility, ability to communicate, and autonomy and may cause pain (Dasch et al., 2017[31]). ICU admission may not be aligned with patients’ values and preferences for their end of life, can lead to worse quality of life for the patient including increased emotional and physical suffering, as well as caregiver distress (Bernacki and Block, 2014[32]; Leith et al., 2020[33]; Wang et al., 2016[34]; Zhang et al., 2009[35]). Figure 4.5 outlines that the ICU admission rates during the last 30 days before death are high but vary between 8% in Switzerland and 22% in Israel. In addition, the OECD survey indicated that patients tend to visit ICU more than once during the last 30 days before death, among the countries reporting data. On average, for each patient admitted to ICU in the last 30 days of life, the number of admissions ranges between 1.06 in Switzerland to 1.23 in Israel (in 2018). There is a decreasing rate of admissions as the age of the patient increases. This mirrors studies that have found that ICU and intensive treatment decrease with age (Bylicki et al., 2019[36]; Levinsky et al., 2001[37]; Menec et al., 2007[38]). This may relate to differing diagnoses between younger and older patients and consequent likely survival rates, which has implications for treatment. For instance, the five-year survival rates for invasive cancer are as low as 40% among older adults, but around 80% in children younger than 15 years old (Keegan et al., 2016[39]).
Close 40% of patients visited the Emergency Department (ED) during the last 30 days before death. Table 4.4 highlights the percentage of people by age group who visited the emergency department during the last 30 days of life. On average, for each patient admitted to ED in the last 30 days of life, the number of admissions is ranged between 1.23 in Sweden (in 2020) to 1.48 in Israel (in 2018). An analysis of administrative health data from New Zealand shows that people in their last year of life receive more aggressive treatments, including higher rates of ED admissions compared to people in the same age group which are not at the end of their life (Hamblin et al., 2018[40]). Furthermore, one meta-analysis focussed on lung cancer specifically found that patients receiving palliative care had few emergency department visits during the last 30 days of life (Bylicki et al., 2019[36]). For those who did access the emergency department, the most common symptoms were dyspnoea and pain (Bylicki et al., 2019[36]).
Treatment and care at the end of life may not necessarily be appropriate to the person’s needs and can pose ethical dilemmas
There are concerns in some countries that a large share of resources is used on treatments that neither prolong life nor provide additional comfort to the patient. Ideally, when a patient is very close to death, this is recognised by the treating team and addressed with the patient, aggressive treatment stopped and supportive services put in place (Barbera, Paszat and Chartier, 2006[41]), although disease progression cannot always be sufficiently well assessed. Evidence from the literature suggests more than one-third (33% to 38%) of older patients with advanced irreversible diseases hospitalised near the end of life received interventions unlikely to provide either survival or palliation benefit (Cardona-Morrel et al., 2016[42]). Another concern related to care at the end of life is polypharmacy, namely the simultaneous use of high numbers of pharmacological treatments, usually more than five drugs at a time. A study on people admitted to hospital palliative care teams revealed that a median of seven drugs were prescribed at the time of admission, decreasing to four at the time of death. Polypharmacy causes high rates of side effects, 80% of people can experience side effects when they intake seven or more drugs (Peralta et al., 2022[43]).
The use of chemotherapy close to the end of life is considered a measure of poor quality of care. Evidence has shown that administering chemotherapy in the last month of life could represent a cause of unnecessary suffering while also constituting a cost to society. Studies on Canada, France and the United States reported that around 17% of people received chemotherapy in their last 30 days of life, while this percentage corresponds to nearly 12% in Switzerland (Woldie et al., 2022[44]). OECD analysis found that the share of people receiving chemotherapy during their last month of life corresponded to between 3% in Sweden to 28% in Israel (Figure 4.6). When looking at data by age group, strong inequalities appear between younger and older people among countries with available data.
Note: Data refer to 2017 for New Zealand, 2018 for Israel, 2019 for the Czech Republic and Denmark, 2020 for Sweden.
Source: (OECD, 2021[19]).
People at the end of life also receive life-sustaining treatments such as cardiopulmonary resuscitation, mechanical ventilation, artificial nutrition, and hydration. Such treatments may lead to complications and a decrease in the quality of life and might not be beneficial when a person is approaching the end of life (Akdeniz, Yardımcı and Kavukcu, 2021[45]). Withdrawal of life sustaining treatments is foreseen to provide palliation and comfort to the person dying. For instance, withdrawal of mechanical ventilation has proven to improve family satisfaction and reduce depression in family members (Gerstel et al., 2008[46]; Kross et al., 2011[47]). Nevertheless, some studies have reported that often people die while receiving mechanical ventilation and other life sustaining treatments. A study from the United States showed that one in two patients who had received mechanical ventilation received it until their death (Gerstel et al., 2008[46]).
When people’s wishes are not recorded and the patient is too ill, clinicians and families need to make treatment decisions, but decisions to withhold or withdraw life-support raise major ethical challenges for health professionals and can become a source of conflict with families. A study showed that conflict occurred between staff and family in 48% of cases when withdrawal of treatment was considered (Way, 2002[48]). Difficult ethical choices at the end of life usually concern the use of treatments such as cardiopulmonary resuscitation, mechanical ventilation, artificial nutrition and hydration and the withholding and withdrawing of treatments (Akdeniz, Yardımcı and Kavukcu, 2021[45]). Discontinuing some treatment or providing pain relief can make death occur earlier: a retrospective study of patients who died in France in each month found that 47.7% of deaths followed at least one medical decision that may have hastened death such as withholding (14.6%) or withdrawal (4.2%) of treatments, or intensified use of opioids and/or benzodiazepines (28.1%). Evidence from a variety of countries also points to many deaths in ICU occurring after withholding or withdrawing treatment (Pennec et al., 2012[49]).
People at the end of life and their families have different preferences of care, which can cause and exacerbate conflicts during decision making. According to a literature review of studies from nine OECD countries (Australia, Canada, Denmark, Germany, Ireland, Korea, the Netherlands, United Kingdom, and the United States), family caregivers seem to value information and health care professionals’ engagement more than patients do. On the other hand, family members underestimate the patient’s preference to avoid caregivers’ burden and to organise personal affairs before death. Decisions around the type of care also represented potential cause of conflict, as family caregivers appeared more in favour of life-sustaining treatment compared to patients. Having information on the health status, the disease and care possibilities were factors associated with better alignment between people’s and family’s preferences (Mulcahy Symmons et al., 2022[50]).
The 2015 Quality of Death Index Ranking palliative care across the world measured quality of end-of-life care (Murray, 2015[51]). In particular, six measures are included in the assessment of such indicator: the availability of monitoring standards for organisations, the availability of opioid painkillers, psychosocial support to patients and families, do-not resuscitate policies, support for shared decision making and the use of surveys to assess patient’s satisfaction. Among the OECD countries included in this assessment, the United Kingdom, Sweden, Australia, New Zealand, and France ranked in the top five, while Colombia, Greece and the Slovak Republic ranked lowest (Murray, 2015[51]). This section discusses examples of best practices across countries highlighting access to pain relief, shared decision-making and reducing unnecessary treatment, psychosocial and spiritual support, as well as monitoring and measurement.
4.3.1. Reducing barriers to accessing pain relief at the end of life
Ensuring appropriate use of pain relief, including opioids, requires a fine balance between measures to minimise the misuse of opioids among the general public and ensure that there is sufficient pain relief for those with high needs. OECD countries have already put in place measures to improve the opioid-related literacy among patients, family, and providers (OECD, 2019[20]). In fact, one of the barriers to pain relief is that health care professionals do not always feel comfortable providing opioids and similar medication because of their possible risks. At the same time, patients and families can be reluctant to accept the use of opioids as they might be seen as dangerous or as an indicator that the end of life is approaching (Bhadelia et al., 2019[52]). Adequate training for health care professionals, safety protocols and monitoring of unlawful practices, without undermining the medical need for opioids, seem to justify the correct use of opioids in Germany and the United Kingdom. These countries succeeded to keep nonmedical use very low, despite the high availability and consumption of opioids (Bhadelia et al., 2019[52]). In particular, evidence from the Netherlands and the United Kingdom showed the positive impact that training has on supporting physicians to prescribe opioids appropriately (British Medical Association, 2017[53]). Among clinicians who received training, 67% report an increase in the confidence when prescribing opioids and 86% report some changes in their prescribing practices (OECD, 2019[20]).
Results from the 2020 OECD End of Life Care Policy Questionnaire suggest that specific prescribing regulations may not present the most pressing barrier to accessing opioid-derived pain relief. Across 24 OECD countries that responded to questionnaire, nearly all countries reported that opioid prescribing is allowed by all medical doctors, though specific licenses are required to prescribe opioids in nearly half (43%) of responding countries (Figure 4.7). In Japan, for example, physicians are required to process both a medical license and a license designating them as a “person licensed to administer narcotics” to prescribe opioids.
Source: (OECD, 2020-2021[13]).
Yet, some countries have supported the provision of pain relief through changes in the rights to prescribe opioids, allowing non-medical professionals to prescribe such medication. When changing prescription practices, countries must ensure that health care providers are knowledgeable about opioids and feel comfortable when making a decision to prescribe such pain relief. The United Kingdom has increased the availability of prescribers since 2012 by giving non-physicians (e.g. specialist nurses and pharmacists) the possibility to prescribe pain relief. The British Medical Association recommends to better promote the existing guidance on the prescription and management of opioids, to support professionals providing pain relief (British Medical Association, 2017[53]). Among OECD countries, 15 have such clinical opioid guidelines in place, usually at the national level (OECD, 2019[20]).
The regulation on medication use has also played a key role to improve access to pain relief. Countries like Germany, Austria, Belgium, Denmark, and the Netherlands show high rates of opioids availability, but low rates of overdose deaths due to opioids misuse (OECD, 2019[20]). In some cases, access to pain-relieving medicine at the end of life has been improved by developing palliative drug programs that subsidise medicines that would not otherwise be covered by health plans, or that expand access to medicines that would not otherwise be made available outside of health care settings, such as at home or in hospice. In Canada, palliative drug programs have been put in place in several territories and provinces, including Alberta, British Columbia, Manitoba, Nova Scotia, Prince Edward Island, Saskatchewan, and Yukon. Among patients in Alberta, British Columbia and Manitoba who were on a palliative drug programme in their last year of life, 81% received opioids for pain relief, compared with just 35% of patients on other public drug plans in their last year of life (Canadian Institute for Health Information, 2018[29]). In Australia, the regulatory body – Therapeutic Goods Administration (TGA) – has acknowledged and highlighted the importance of opioids for the treatment of symptoms and publicly stated that regulations “must not unduly restrict informed, rational prescribing of opioids” (TGA, 2018[54]). Furthermore, the position statement of Palliative Care Australia on Sustainable access to prescription opioids for use in palliative care provides eight recommendations5 for a sustainable opioid management, to improve the access to such medications while minimising the risks linked to their use (PCA, 2019[55]). Among OECD countries, there has been a recent trend in adjusting regulations to enhance transparency in marketing relationships, but impact evaluations are not common6 (OECD, 2019[20]).
4.3.2. Reducing unnecessary treatment and managing ethical dilemmas
Reducing the prevalence of unnecessary treatments as patients approach the end of life can help to improve their quality of death – by, for example, facilitating death in the home based on preference – while also reducing the high costs of care that often come at the very end of life. Supporting health care professionals facing ethical dilemmas can reduce disagreements and facilitate the provision of the most appropriate care at the end of life.
Early provision of palliative care, physicians’ training and advance directives can reduce unnecessary treatment
Early palliative care, especially community-based, is often associated with reducing non-beneficial treatment. A systematic review of interventions intended to reduce unnecessary end-of-life hospital use found that the introduction of community-based palliative care interventions was associated with reductions in hospital use at the end of life (Taylor et al., 2020[56]). Among patients who had not received community-based palliative care, some evidence suggests that receiving palliative care initiated during their hospital visit may still help to reduce the length of stay (Wu et al., 2013[57]; May et al., 2017[58]). A ten-year study in Canada shows that early specialist palliative care exposure reduces the risk of hospital-based acute care, including ICU admission, in the last 30 days of life for all chronic disease groups except dementia (Earp et al., 2021[59]). Early referral to palliative care also appears to be associated with a lower likelihood of receiving chemotherapy in the last month of life, better quality of life and longer survival rates (Qureshi et al., 2018[60]; Temel et al., 2010[61]; Woldie et al., 2022[44]). Some evidence suggests that training in palliative care affects decision-making about end-of-life treatment decisions for physicians, although research on this front is scarce. Evidence has found that doctors trained in palliative care were less likely to choose to pursue more aggressive courses of treatment at the end of life, such as blood transfusions and intravenous hydration (Piili et al., 2018[62]).
Regulation establishing the right of patients to take an active role in decision making at the end of life seems to also influence treatment choices. The United States introduced the Federal Patient Self-Determination Act (PSDA) in 1991, which entails that physicians should engage in conversations on end of life preferences and support patients in decision making, but must respect the patient’s autonomy to voice their choices (Karnik and Kanekar, 2016[63]). In France, a 2005 law on patient rights at the end of life expanded the involvement of patients and their families in end-of-life care decision-making while facilitating opportunities for communication between the health care team and the patient and their carers. In a study of deaths in intensive care in one health care facility in France before and after the implementation of the 2005 law and development of an end-of-life care communications strategy, the proportion of patients who died following a decision to withhold or withdraw treatment nearly doubled, rising from 45% prior to the implementation of the law and communications strategy, to 85% after it was introduced (Quenot et al., 2012[64]).
Furthermore, all physicians, regardless of whether they had received palliative care training, were more likely to pursue aggressive treatments following advocacy by family members, while the having an advance directive was associated with a lower likelihood of aggressive treatment (Piili et al., 2018[62]). A range of communication tools to help guide end of life discussions in different settings, such as intensive care units, have been developed to improve decision-making and the quality of communication. While further high-quality studies are needed, evidence suggests that the uptake of such communication tools may be associated with less intensive treatment at the end of life, in addition to improvements in how end-of-life decisions are documented (Oczkowski et al., 2016[65]). The United States developed the Physician Orders for Life-Sustaining Treatment (POLST) in the early 90s and as of 2020 POLST are adopted in most states. The POLST forms are standardised and thus transferrable across settings of care. A systematic review found that when people had POLST, in most cases there was alignment between their wishes and the care that people received. This was the case for 93% of people with stated preferences on artificial nutrition/hydration, 96.5% for antibiotics use and 97.5% for cardiopulmonary resuscitation (Tark et al., 2020[66]). POLST can also be advantageous for people with dementia. Their use appears to increase communication and documentation around end-of-life care preferences as well as the alignment between preferences of care and care provision for people with dementia. Some issues linked to POLST consist in the difficulties of nurse practitioners in discussing and explaining care options as well as a lack of understanding of POLST and issues with proxy people (Kim et al., 2015[67]).
Managing ethical dilemmas and disagreements can lead to care that is effective and in line with people’s preferences
While hospital use at the end of life has been associated with non-beneficial or inappropriate treatment, not all hospital treatments are unnecessary, and the likelihood of receiving non-beneficial care once admitted to hospital has been associated with whether patients had disagreements within their own family or clinical teams about their care (Carter et al., 2019[68]). Balancing over treating with withholding or stopping treatment at the appropriate time can represent a tremendously difficult balance for health professionals, both in ensuring care is not removed too hastily, and that the patient, as well as their carers and family, understand and agree with the decisions being made. Communication difficulties among and between patients, patient’s families, and health professionals have been frequently identified as one of the most challenging issues confronting high-quality end-of-life care (Price et al., 2019[69]). Patients or families may be resistant or opposed to the care that health care professionals may be inclined towards, particularly around the withdrawal of life sustaining or prolonging treatments. Furthermore, patients and their families might have different preferences, generating disagreements (Mulcahy Symmons et al., 2022[50]).
In addition to general ethical principles driving decision making in health care, countries have also put in place national guidelines to help health professionals make end-of-life care decisions. There are four important ethical principles guiding end-of-life care decisions: autonomy, beneficence, no maleficence, and justice. Autonomy consists in the right of self-determination of the patient whose decisions should be respected, beneficence means that physicians need to choose the best intervention for their patients, no maleficence corresponds to avoiding unnecessary harm, while justice refers to fair and impartial distribution of health care services and resources (Akdeniz, Yardımcı and Kavukcu, 2021[45]). In addition, three-fifths of surveyed OECD countries (15 of 25) reported that they had in place national guidelines to manage situations of misalignment between patients and health care providers (Figure 4.8). Such guidelines are often embedded within broader guidelines on decision making regarding withholding and withdrawing treatment. For instance, the Australian State of Queensland issued comprehensive guidelines on decision making regarding withholding and withdrawing life sustaining measures from adult patients. The guidelines include support regarding how to manage possible disputes that might arise with patients and families, recommending having a respectful conversation, allow time, seek other opinions and assistance with conflict resolution when needed. The guidelines recommend involving an impartial third party in the discussion, for instance a senior health professional. If conflict persists, the guidelines also suggest referring to hospital ethics committees (Queensland Health, 2018[70]). The Canadian Critical Care Society also developed guidelines on withholding and withdrawing treatments which support physicians making decisions at the end of the patients’ life, including guidelines on how to deal with disagreements with patents and families over the preferred care. Such guidelines also recommend seeking the opinion of an experienced third party (e.g. other health care providers, spiritual care providers) before referring to ethics committees or institutional ethics consultants (OECD, 2020-2021[13]).
Source: (OECD, 2020-2021[13]).
Growing evidence suggests that ethical consultations or ethics committees may help to improve important measures of end-of-life care quality and the experiences of patients, their carers and health care staff. Studies of patients who did and did not receive ethics consultations in hospital at the end of life found that while mortality rates were unchanged, the number of days spent in intensive care units, as well as the provision of life-sustaining treatments, both fell for the patients who had received an ethics consultation, compared with those in the control group (Au et al., 2018[71]; Schneiderman, Gilmer and Teetzel, 2000[72]).
A majority of OECD countries report having interdisciplinary ethics committees and employee assistants who are in charge of helping employees facing difficult ethical decisions in end-of-life care, with slightly more than one-third of responding countries (9 of 24) reporting that such committees and staff members are available in most or all facilities providing end-of-life care (Figure 4.9). In Canada, regions should have formal resolution processes for health care disputes, involving multiple representatives and stakeholders. Costa Rica has Local Committees of Clinical Bioethics in public hospitals to provide case by case support for conflict resolution. Similar ethics committees and mediation services are also available in many health care settings in the United Kingdom and France. The latter has a national ethics committee and is currently setting up regional ethical support platforms. Furthermore, during the pandemic French ethics centres provided support through phone lines (OECD, 2020-2021[13]).
Source: (OECD, 2020-2021[13]).
4.3.3. Ensuring a comprehensive approach to EOLC
Multidisciplinary teams can address all person’s needs in a holistic approach
Taking into account all needs of the person at the end of life, holistically, requires a joint effort of several professionals. Furthermore, with people at the end of life often suffering from comorbidities, the co-ordination across different professionals is even more crucial. Multidisciplinary teams represent a way to adequately address all the person’s needs. Multidisciplinary teams consist of groups of professionals with different specialisations, who can co-operate and co-ordinate in providing care to the person at the end of life. Multidisciplinary teams address physical symptoms as well as psychosocial and spiritual needs.
All surveyed OECD countries reported having multidisciplinary teams to provide EOLC services, but the number and types of professionals vary across countries. Doctors, nurses, and social workers are most often included in such teams, with respectively 23, 22 and 16 countries reporting including those professionals in EOLC teams. Radiotherapists, paramedics, and occupational workers are the least involved in multidisciplinary teams. Furthermore, despite the importance of considering the psychological needs of people at the end of their life and their relatives, psychologists and psychotherapists are included respectively in 14 and 7 out of 27 surveyed OECD countries (Figure 4.10). Pharmacists could also play a growing role in end-of-life care and be involved in multidisciplinary teams. Some OECD countries have already started to expand the role of pharmacist by allowing them to change prescriptions to generic drugs, administer vaccines for COVID-19, renew or extend prescriptions for contraceptives, order laboratory tests. Estonia has also integrated pharmacists into multidisciplinary teams (de Bienassis et al., 2022[73]). Building on the trusted relationship with patients and their pharmaceutical knowledge, they could provide advice and support to the patients and their relatives, initiate discussion on end of life, monitor the pharmacotherapeutic process and support families in the bereaved period (Wendy Archer, 2017[74]).
Interdisciplinary palliative care teams were found to improve the satisfaction of patients at home and in hospitals, especially with the communication but were also related to improved continuity of care and better hospital discharge (NICE, 2019[2]). Interdisciplinary teams at the end of life can include a range of professionals such as a doctor, nurse, social worker, an occupational therapist but also a psychologist and a home care worker. Case management is beneficial for patients with progressive life-threatening illnesses and complex needs as it can reduce the likelihood of gaps in care, time in hospital, the use of aggressive care and caregiver burden. Case managers help patients and their families with assessment, planning, implementing, co-ordinating, monitoring, and evaluating the options and services required to meet the client’s health and service needs. As people at the end of life often experience transfers across settings, someone helping with communication across settings can be beneficial. Evidence from the Netherlands shows that the percentage of patients who die at home is higher and the number of hospitalisations in the last 30 days of a patients’ life is lower when a case manager is involved offering advice and support (van der Plas et al., 2015[75]). An early and integrated approach that joins up different services has the potential to improve quality of life and symptom intensity (Healthcare Improvement Scotland, 2019[76]).
Some countries include multidisciplinary teams in the guidelines for the provision of end-of-life care. In 2019, the English National Institute for Health and Care Excellence (NICE) published guidelines on the EOLC services delivery. Guidelines report the importance of multidisciplinary teams that can take care of the person at the end of life holistically and they underline the crucial role played by advance care planning and electronic records sharing within the multidisciplinary team, to ensure care co-ordination. The guidelines do not define precisely what professionals should be included in the team, but rather list the type of support that the team must be able to provide (NICE, 2019[2]). In France since 2004 the guidelines require that when a patient starts an EOLC programme multidisciplinary teams must meet to discuss the patient’s needs. The teams must also care and support the relatives of the person reaching the end of life (French Ministry of Health, 2008[77]).
Other countries have introduced programs and projects for the provision of end-of-life care that foresee the use of multidisciplinary teams. In Canada, the composition of multidisciplinary teams varies across the country. Doctors, nurses, auxiliary nurses, and social workers are the minimum requirement, but other professionals can be part of such teams. The Canadian Society of Palliative Care Physicians has designed a model to calculate the staffing needs for multidisciplinary teams providing palliative care (OECD, 2020-2021[13]). In the Czech Republic, the Ministry of Health has funded a pilot project to implement multidisciplinary palliative care teams in acute care setting. The project started in 2017 and is currently ongoing in 6 large hospitals across the country. At the end of the implementation phase (i.e. 2026), it is expected that at least 5 of the 6 pilot hospitals will continue using such multidisciplinary teams.
Ireland, Japan, and the United States are addressing the need of multidisciplinary teams through training initiatives. The All-Ireland Institute of Hospice and Palliative Care has launched the ECHO AIIHPC project to provide nursing home staff with occasions of mentoring and development on palliative care. The project brings together nursing home staff and multidisciplinary teams from specialist palliative care services, which engage in case studies discussion and exchange on difficult patient scenarios (National Clinical & integrated Care Programmes, 2019[78]). Such interdisciplinary interaction has proven to improve professionals’ confidence to provide palliative care (Dowling et al., 2020[79]). Japan launched in 2012 the “Care for Life-threatening Illnesses” programme, which provides paediatricians with palliative care education (Murray, 2015[51]). In the United States, since 2002 the Department of Veterans Affairs provides training about palliative care to a plethora of professional figures (i.e. chaplains, nurses, pharmacists, physicians, psychologists, and social workers) to prepare them to work as part of EOLC multidisciplinary teams. The programme, the VA Interprofessional Fellowship in Palliative Care, lasts one year and combines clinical and academic training opportunities. The academic training includes treatment of physical symptoms, EOLC conversations, ethical and legal issues and psychological issues related to the end of life. At the end of each programme, several indicators are calculated to measure the success of the programme (Weller et al., 2019[80]).
Some countries have included spiritual support in guidelines and include actions for relatives
Spiritual care complements and overlaps with psychosocial support. Already in 1998, the WHO included spiritual needs as an essential domain of life and included it into quality-of-life measurements (The Whoqol Group, 1998[81]). Spirituality at the end of life does not exclusively refer to religion, but it encompasses everything that provides meaning to life. Spiritual care provides meaning and purpose to the life of people that, in the dying process, suffer from a loss of meaning. Such care has proven effective in helping people cope with grief and ill health. It entails the assessment of the person’s believes and needs to provide the best support in line with their wishes (Colleen Doyle, 2016[82]). Growing evidence has shown that spiritual care improves people’s experience of the end of life, across age groups and disease groups. When spiritual care is missing, people are more likely to experience dissatisfaction with care and more aggressive care, higher costs of care. This is particularly the case among ethnic minorities (Gijsberts et al., 2019[83]).
The Netherlands included spiritual care within palliative care guidelines in 2006. In the same period in Rotterdam there was the first course to train experts in palliative care and spiritual care, which involved international experts, including German experts who drew upon their previous experience with palliative and spiritual care training. Although spiritual care is currently not integrated system-wide in the Netherlands Palliative Care National Programme, some progress has happened. The government of the Netherlands has recognised the importance of spiritual care and currently has multidisciplinary guidelines on spiritual care and an inventory of competencies for spiritual care. Furthermore, in 2011 the European Association for Palliative Care (EAPC) established a taskforce on spiritual care in palliative care, including primary caregivers, spiritual care providers, researchers, psychologists, social workers, and policy makers (van de Geer and Leget, 2012[84]).
Helping caregivers manage their emotions, accept the end of life of their relatives and more generally improve their mental health is an emerging policy area in the field. A systematic review including studies from Australia, Canada, the Netherlands, United Kingdom, and the United States has reported interventions to support family caregivers of people with dementia reaching the end of life. Interventions adopted included provision of information, psychoeducational programs, family meetings, psychosocial support, and education. The best results were obtained through structured psychoeducational interventions and regular family meetings (Gonella et al., 2021[85]). Similar evidence also comes from Japan, where a survey of bereaved families showed that family members who had end-of-life conversations were less likely to experience depression and complicated grief. In turn, they reported a better quality of death and dying (Yamaguchi et al., 2017[86]). Furthermore, respondents to the Veterans Affairs’ Bereaved Families Survey in the United States reported high appreciation for the support received by health care staff during grief, through expressions of condolence. The Veterans Affairs’ inpatient facilities also provide bereaved families with booklets reporting information on benefits entitlement after the Veteran’s death, recommendations for local lodging, restaurants, and funeral arrangements. Bereaved families have reported high appreciation for this set of support actions (Gray et al., 2020[87]).
4.3.4. Improving quality monitoring for end-of-life care
As outlined earlier in this Chapter, for too many people high-quality end-of-life care is not the reality. This section describes efforts from some countries to have a stronger focus on monitoring and measuring the quality of end-of-life care which are critical to show quality improvements.
More efforts could be made to ensure widespread use of quality guidelines and standards
Well-defined care guidelines and standards can help drive improvements in care quality. By setting a benchmark for high-quality, evidence-based care, they can provide guidance on the interventions that patients should receive, can make gaps between best practice and care delivery more apparent, and they can promote person-centredness by increasing transparency about the treatments and interventions to which patients and their families are entitled.
While many countries have some form or care guidelines or standards, greater efforts are needed to ensure that they are well-framed to drive tangible and meaningful improvements in care quality. Most of the countries report having quality standards, norms, or guidelines in place to inform quality palliative and end-of-life care, though many are voluntary. Across 24 responding OECD countries, more than three-fifths (63% – 15 of 24 countries) responded that they had specific quality standards or norms to guide end of life care services on a national level, with a further two countries reporting that quality standards or norms existed on the regional level (Figure 4.11). While most of the countries report having developed palliative care or end-of-life care standards and guidelines, however, not all national quality standards are mandatory, monitored or enforced through review. The approach to care guidelines varies across countries: in some countries there are specific care guidelines for end-of-life care, whilst in other countries, guidance with respect to end-of-life care is embedded in clinical guidelines for the treatment of specific conditions, such as cancer.
Source: (OECD, 2020-2021[13]).
Clinical care guidelines
Care guidelines could provide one mechanism by which to begin to tackle the challenges of over and under-treatment outlined in this chapter by providing clear guidance on interventions that are effective and cost effective. Norway, Denmark, and England stand out for having dedicated care guidelines for end-of-life care that are applicable in a broad range of care settings, and that touch on both medical and social care needs. In Norway, for instance, there is a national clinical guideline on palliative care in the final stages of life. While it is primarily focussed on guidance to effectively meet patients’ physical needs and symptoms, it also contains guidance on effective end-of-life conversations that recognise physical, mental, social and spiritual needs, and on person-centred care planning (The Norwegian Directorate of Health, 2018[88]). In Denmark, there are two national recommendations for palliative care for adults and for children and young people. They provide guidance on holistic needs assessments, end-of-life conversations, patient and relative involvement and support for survivors, and emphasise a multidisciplinary approach (Danish Health Authority, 2017[89]). Denmark’s care guideline also stands out for making several recommendations around quality monitoring, assurance, and improvement. In the United States, the National Coalition for Hospice and Palliative Care, an independent organisation comprised of 12 national hospice and palliative care organisations, publishes consensus-based clinical practice guidelines for quality palliative care that include guidelines on culturally competent communication.
In the United Kingdom (England), the National Institute for Health and Care Excellence (NICE) has published four clinical care guidelines on end-of-life care which are accompanied by care indicators and appear to be binding. The four guidelines focus on i) end-of-life care for adults, ii) end-of-life care for adults in the last days of life, iii) end-of-life care for children and young people, iv) on the use of opioids for pain relief. They are oriented to commissioners, providers, and practitioners, as well as adults approaching the end of their life, their carers, and families (NICE, 2014[90]). England’s care guidelines stand out for being accompanied by a range of care quality standards which contain specific and measurable indicators of care quality (outlined in Table 4.5 below). Specific guidelines or recommendations on end-of-life care are also under development in a number of other countries, for example in Ireland, where the Clinical Effectiveness Committee has authorised the National Clinical Programme for Palliative Care to develop a national guideline on care for the dying adult (HSE Ireland, 2019[91]).
In several countries, guidance on aspects of end-of-life care is also embedded in clinical guidelines for the treatment of specific conditions, such as cancer, for example in Ireland, clinical guidelines on the management of cancer pain and constipation include guidance on managing symptoms toward the end of life. In England, Norway and Denmark, national care guidelines on end-of-life care are also accompanied by a range of specific guidelines for the treatment of certain conditions, which include components of end-of-life care such as symptoms management. For example, in England there is a national guideline on improving supportive and palliative care for adults with cancer and in Norway there is a guideline on palliation in cancer care. In Denmark, it is expected that the national recommendations for palliative care will be embedded in relevant care guidelines, for example in relation to the treatment of specific conditions. In addition to these national recommendations, several professional organisations have also developed clinical guidelines with respect to palliative care (Danish Health Authority, 2017[89]).
Several countries have taken steps to ensure a consultative approach to the development of care guidelines, and these efforts are to be welcomed. Developing care guidelines with input from the providers and users of services provides a valuable tool by which to ensure buy-in to recommendations, and the involvement of patient and carer representatives is one way by which to promote person-centredness in care. In several countries – such as Denmark, Norway, Ireland, and England – care guidelines have been developed in close consultation with a broad set of stakeholders.
Care quality standards
Care standards can drive care quality by setting a standard for care systems to aspire and to, and by making gaps between best practice and care delivery more evident. Care standards for end-of-life care typically focus on early identification of people who are reaching the end of their life, shared decision-making with patients and their relatives, symptoms and pain control, holistic care that includes support to patient’s relatives, advance care planning, multidisciplinary and co-ordinated care provision. However, there is variation across countries as to the breadth and depth of care standards, in terms of the settings and interventions covered, and the extent to which they are measurable. While many countries have care quality standards for end-of-life care, they are sometimes limited to specific care settings or institutions – or where they are not – are often not mandatory or measurable.
Several countries, such as the Netherlands, Canada, and England, have developed comprehensive care quality standards for end-of-life care. For example, in the Netherlands, in 2017 Palliative Care Netherlands (PNZL) – with the support of the national Ministry of Health Welfare and Sport – published an expansive Quality Framework for Palliative Care, together with a conceptual framework setting out shared and unambiguous definitions of key concepts. The framework was developed through consultation with patients, families, health care professionals and insurers to develop a joint vision and criteria for the quality of palliative care in the Netherlands and aimed to define high-quality care from the perspective of those who receive it. The Dutch framework stands out for its breadth and depth, with a focus on ten specific quality domains that cover core values and principles, structures and processes, and physical, psychological, social, cultural, ethical and legal components of care (IKNL/Palliactief, 2017[92]). A patient version of the framework was published by the Dutch Patient Federation in 2019 to provide further transparency about the standards of care that patients can expect, and is available as both an e-book and PDF (Palliaweb, 2019[93]). Whilst the framework defines care quality, it does not – by its own design – set out how high-quality care can be monitored or achieved: it defined what care should be provided and when, but not how, and work is ongoing to translate these principles into specific and measurable actions that drive care quality (IKNL/Palliactief, 2017[92]).
In Canada, a new standard for palliative care services for adults was published in 2020, broadening the scope of care standard beyond facilities to include home and community care. The care standards are focussed on staff capacity, the provision of safe and effective services, ensuring enabling and supportive environments, care co-ordination, and care continuity (Health Standards Organisation, 2020[94]). Similarly in Australia, the commission on safety and quality in health care has published standards that focus on two areas: i) the process of care (i.e. patient-centred communication, shared decision-making, care co-ordination, recognition of patients reaching the end of life); and ii) organisational prerequisites (governance, education and training, support to multidisciplinary teams, monitoring and evaluation) (Australian Commission on Safety and Quality in Health Care, 2015[95]).
England stands out for having measurable care quality standards, aligned to a national vision for care quality. In 2014, the Leadership Alliance for the Care of Dying People – a national coalition of 21 organisations including Public Health England, NHS England, NICE and the Care Quality Commission – published One Chance to Get it Right, a joint national vision on the approach to and quality of care for dying people. The national principles have been translated into clear, measurable standards by being embedded into relevant clinical care guidelines and care quality standards. The National Institute for Health and Care Excellence (NICE) has published several comprehensive quality standards for end-of-life care which contain structure, process, and outcome measures of care quality (National Institute for Health and Care Excellence, 2022[96]). The quality standard for end-of-life care for adults, for instance, contains five quality statements with accompanying quality measures of care quality (Table 4.5).
In other countries, care quality standards are limited to specific care settings or providers or have not yet been fully developed. For example, in the United States, care standards are limited to hospice care provided through Medicare. All Medicare hospice providers are required to assess and address patient’s needs in a written plan within 48 hours of election of hospice care, including their physical, psychosocial, emotional, and spiritual needs. The Centres for Medicare and Medicaid Services also select hospitals that can participate to the PPS-Exempt Cancer Hospital Quality Reporting (PCHQR) Program. Currently 11 hospitals participate to the programme collecting and publishing data on: i) Proportion of Patients Who Died from Cancer Receiving Chemotherapy in the Last 14 Days of Life; ii) Proportion of Patients Who Died from Cancer Admitted to the ICU in the Last 30 Days of Life; iii) Proportion of Patients Who Died from Cancer Not Admitted to Hospice; iv) Proportion of Patients Who Died from Cancer Admitted to Hospice for Less Than Three Days. In Ireland, there are well-defined quality standards for end-of-life care, but these are limited to hospitals. The care standards emerged from a 2008-09 national audit on end-of-life care in hospitals and are focused on four key areas: the hospital (governance, communication and records, physical infrastructure), the staff, the patient, and the family (Hospice Friendly Hospitals, 2013[98]). In some countries, such as Estonia, care standards are very limited whilst in other countries (Greece, Hungary, Latvia, Lithuania, Mexico, and Slovenia) care standards on end-of-life care have not yet been developed. In Portugal, care standards for palliative care are expected to be published by the end of 2022. In Portugal, a designated group of experts is developing by the end of 2022 the first set of standards to be applied by all specialised palliative care teams.
Even in countries which have defined what high-quality end-of-life care looks like, there remains scope for improvement. Care standards are often normative or principles-based, and not measurable, and as such there is a limit to the extent which they might be expected to drive improvements in the quality of care. In Ireland, for instance, one measure of care quality is that hospitals’ service plans should reflect a ‘clear ethos’ of end-of-life care. Similarly in the Netherlands, the national quality framework defines what high-quality care is, but quality standards are not measurable. For care standards to drive meaningful improvements in care quality, it will be critical that they are translated into concrete expectations, and that there are adequate processes and mechanisms in place to ensure that these standards are met.
While some countries have developed national standards and norms for the practice of end-of-life care, many standards and guidelines have been prepared by or in co-operation with associations of health care workers and professionals, with the intention of strengthening the delivery of quality care among members of that profession, such as the Palliative and End-of-Life – Entry-to-Practice Competencies and Indicators for Registered Nurses issued by the Canadian Association of Schools of Nursing (Olsson et al., 2021[99]). Despite the high quality of many of these standards and guidelines, studies have found that the guidelines governing quality end-of-life care across professions that work together at the end of a patient’s life are not always co-ordinated, possibly introducing challenges to the provision of person-centred, integrated care through multi-disciplinary teams. In a review of applicable standards and guidelines governing end-of-life care in Saskatchewan, Canada, researchers found relevant standards produced by 11 health care professional organisations, which were not always aligned in terms of even the definition and concept of end-of-life care (Buness et al., 2021[100]).
Auditing and evaluation of care standards can drive care quality and some countries are assessing new levers
As outlined earlier in this Chapter, there is a limit to the extent to which care standards can be expected to drive care quality unless there are appropriate mechanisms in place to ensure that those standards are met. A range of approaches have been adopted across OECD countries to ensure the quality of end-of-life care, from recommendations or requirements for internal and external scrutiny and assurance, and a range of other levers to monitor, enforce and improve the quality of end-of-life care.
Auditing or evaluation programmes are important to monitor quality
Most countries report that audit or quality evaluation programs are in place to monitor palliative care, though too many countries have no mechanisms in place to ensure the quality of care. Across the 23 countries that responded to the OECD End of Life Care Policy Questionnaire, more than one in four countries (6 of 23) reported that there were no audit or quality evaluation programs in place to monitor palliative care services. Three-fifths (14 of 23) reported that a system of audit and quality evaluation was in place for palliative care services, with a further three countries reporting that audits or other quality evaluation programs depended on the region (Figure 4.12).
Source: (OECD, 2020-2021[13]).
Three-fifths of OECD countries have audit or quality evaluation programs in place for end-of-life care, but they do not always cover all care settings, or care providers. For example, the United States have a monitoring process for hospice settings, with all Medicare-certified hospices required to have a quality assessment and performance improvement programme in place (Centers for Medicare and Medicaid, 2021[101]). End-of-life care that occurs outside of certified hospice programs, however, are not included in the quality measures, which focus specifically on the hospice setting.
Where audit or quality evaluation programmes are in place, there is variation across countries as to whether there is a recommendation, requirement, or opportunity for internal or external assurance. In some countries care providers are encouraged or required to have appropriate internal assurance measures in place, whilst in other countries there is also a broader system of external assurance and inspection. In Ireland, for instance, extensive guidance has been provided to support care providers in conducting a self-assessment of the quality of their services. A series of quality assessment and improvement workbooks have been developed as part of the ‘Towards Excellence in Palliative Care’ initiative, designed to help specialist palliative care service providers self-asses the quality of care against national health care standards. However, whilst incredibly comprehensive, the quality elements contained in the workbooks are not always measurable (HSE Ireland, 2014[102]).
Conversely in other countries – such as England and the Netherlands – there are comprehensive systems of external assurance. In England, for instance, the Care Quality Commission (CQC) – an independent regulator of health and adult social care – provides external assurance over the quality of end-of-life care services. The Care Quality Commission conduct inspections of end-of-life care services as part of their inspection regime, and use National Institute for Health and Care Excellence (NICE)’s quality statements to inform their assessment of care quality (National Institute for Health and Care Excellence, 2014[103]). The Care Quality Commission publish inspection ratings for acute hospitals, community hospitals and independent hospices in an online ‘end-of-life care ratings map’ (Care Quality Commission, 2022[104]). A National Audit of Care at the End of Life (NACEL) is also conducted annually, though this is focussed only on hospital care, and evaluates hospital performance vis-à-vis existing quality standards and principles (NHS, 2022[105]). The audits are informed by input from providers, patients, and their families.
In the Netherlands, the Inspectorate for Health and Youth Care provide external assurance over the quality of care in nursing homes, hospitals, and district nursing including palliative care. There is also a voluntary inspection programme for hospice care, attached to the ‘PREZO quality mark’; a voluntary accreditation programme open to members of the Association of Hospice Care in the Netherlands (Associatie Hospicezorg Nederland, AHzN). The PREZO quality mark for Hospice Care certifies best-practice EOLC in accordance with the Dutch Palliative Care Quality Framework, and is focussed on the last three months of life and after care (The Association of Hospice Care Netherlands, 2022[106]; Perspekt, 2022[107]).
Levers for driving service improvement
Alongside the establishment of care standards and the development of internal and external systems of assurance, countries have trialled several different levers to drive care quality, for example through specific clinical quality programmes or by leveraging payment systems to drive care quality. For example, In Denmark, data from the Danish Palliative Care Database is used at a regional level to monitor and manage the quality of care, aligned to both national-level health system goals and individual-level measures of the outcomes of care (Box 4.1). In addition to the quality improvement mechanisms attached to the Palliative Care Database, there are several specific quality improvement programmes. For example, in 2017 the Learning and Quality Team (LKT) for specialised palliative care brought together a group of clinical experts in the field of palliative care and quality improvement to improve the quality of palliative care, improve quality of life, improve support for support networks and reduce the number of patients who are referred to care but do not have time to receive it (Danish Regions, n.d.[108]; Danish Health Authority, 2017[89]). The project led to the development of new treatment packages, as well new ways to measure their efficacy using existing and newly developed indicators in the Palliative Care Database. The packages include a number of measures focused on meeting the physical and mental needs of service users and their families, including a focus on pain relief, shortness of breath, depression, constipation and delirium, ACP conversations and support for relatives – especially families with teenagers (Danish Health Authority, 2017[89]).
The approach to quality improvement for specialist palliative care in Denmark
As outlined earlier in this Chapter, the Danish Palliative Care Database contains quality data on a range of indicators related to specialised palliative care. The Danish approach stands out for its data-driven programme of quality improvement, and for its alignment of national, regional, and individual measures of care quality.
Alignment
Denmark stands out for its alignment of national, regional, and individual measures of the quality and outcomes of care. The National Goals of the Danish Health Care System (2018) contain a specific goal on care quality and measure the extent to which Danish regions fulfil quality goals in clinical quality databases. The Danish Palliative database contains a range of indicators related to the provision of specialised palliative care, including an indicator on the share of patients who have completed a patient-reported survey on their symptoms at several points throughout their care (these are outlined in further detail below). Aligning national, regional, and individual measures of care quality can help to ensure that efforts are pulling in the same direction.
Data-driven quality improvement
The Danish Clinical Quality Program – National Clinical Registries (RKKP) aims to spur continuous improvement in care quality. The data entered in the Danish Palliative Care Database – which covers 100% of specialist palliative care services – is analysed by clinical epidemiologists, and monthly/quarterly feedback is provided to all clinical departments, with risk-adjusted data provided once a year. The analysis can spur regional or national-level clinical audits and can help to inform specific quality improvement initiatives.
Source: (Danish Ministry of Health, 2018[109]; The Danish Clinical Registries (RKKP), n.d.[110]).
Several countries have trialled or are considering mechanisms to leverage payment systems to drive care quality. In the Netherlands, the newly-developed Quality Framework contains a recommendation that health insurers develop reimbursement criteria for palliative care that incorporates the standards and criteria set out in the quality framework – but suggests that this be phased in gradually (Palliaweb, 2019[93]). In England, there are several pay-for-performance measures already in place in primary care, to encourage the early identification and management of palliative care needs in General Practices (GPs). England’s Quality and Outcome Framework – a voluntary framework with upside incentives – contains two measures related to palliative care, namely that GPs maintain a register of all patients in need of palliative care/support irrespective of their age, and that the GP has a regular (at least 3 monthly) multidisciplinary case review meetings where all patients on the palliative care register are discussed.
There is a need to strengthen quality indicators patient- or carer-reported experience or outcome measures
Quality and outcome indicators provide one useful way by which to translate high-level care quality standards into specific, tangible measures of care quality that can provide an insight into health system performance and individual care outcomes. Quality and outcome indicators provide an invaluable tool by which to understand and drive improvements in care quality and systems performance. Well-defined quality and outcome indicators can be used as a governance and accountability tool to understand and manage system and provider performance, and as a clinical tool to measure individual care outcome. Measuring the quality of end-of-life care in a systematic and comparable way requires a strong data infrastructure, with comprehensive health data governance, legislation, and policies that allow health data to be linked and accessed (see Chapter 6).
The indicators operationalised to measure the quality and outcomes of end-of-life care across countries are limited in both their scope and coverage. Measures of care quality and outcomes – where indeed they are collected at a national level – tend to be narrow in focus. This is due in part to data availability. The indicator for which most countries have available data is place of death (14 OECD countries provided available data, results are reported in Chapter 2), followed by hospital admissions in the last year of life (12 countries), hospital 30-day readmission (9 countries) and visit to the emergency department in last 30 days of life (7 countries). Data for other indicators of negative quality such as use of chemotherapy in the last days of life or positive quality indicators such as numbers using palliative care, recording advanced directives, or being referred for palliative care appear to be less widespread.
Greater efforts are required to monitor the quality of end-of-life care: very few countries have national-level indicators of care quality that apply across different care settings and populations. The literature has identified multiple studies relying on survey or focus group data, which record the perceptions of care and most of them concerned the processes and outcomes of palliative care, whereas there were few indicators dealing with the organisational structure of palliative care. Moreover, not all domains of palliative care were covered to the same degree: there was an underrepresentation of psychosocial, spiritual, and cultural domains. Finally, most indicators were restricted to one setting or patient group, often cancer patients (Daryl Bainbridge and Hsien Seow, 2016[111]).
In several countries – England, Italy, and Norway – isolated indicators of EOLC quality are embedded in broader health care quality frameworks and tend to be focussed on particular conditions or care settings. For example, in January 2020 Italy launched 88 national health quality indicators as part of its new system for monitoring the equity, effectiveness and appropriateness of health care (‘Griglia LEA / Nuovo Sistema di Garanzia’), with performance data published online. There is one core quality indicator on access to palliative cancer care, namely the number of deaths due to cancer assisted by the palliative care network (Italian Ministry of Health, 2022[112]). In England, there is one national-level indicators with respect to the quality of end-of-life care, namely the share of people with three or more emergency admissions in the last three months of their life, which is used to provide an indication of the quality of services and community-based support. There are also two quality indicators focussed specifically on primary care, which form part of England’s Quality Outcomes Framework for General Practitioners (GP). These are discussed in further detail below. Similarly in Norway, activity-based data on the provision of palliative care services is collected, connected to activity-based (DRG) payments. There are a number of indicators related to admissions to inpatient care and the provision of outpatient care, and there is also one indicator which focuses on counselling and collaboration between palliative care centres and municipal health and care services (Norwegian Directorate of Health, 2020[113]). In other countries, such as Estonia, there are no national quality indicators specifically for end-of-life care, though broader national health care quality indicators touch on some components of end-of-life care. For example, Estonia has several care quality indicators related to timely access to cancer care (Estonian Health Insurance Fund, 2022[114]).
Even in countries with more advanced systems of quality and outcome measurement for end-of-life care – such as Ireland, the United States and Denmark – quality and outcome indicators remain geared toward measuring access to services rather than the experiences and outcomes of those services, or they are limited to specific services or providers. In Ireland, a national set of key performance indicators for palliative care are included in the HSE’s Annual Service Plan, and all service providers are required to submit performance data monthly. An annual management report then provides benchmarking results with national average and breakdown by Community Health care Organisation). However, the quality indicators are mostly focussed on measuring timely access to care (see Table 4.6).
In the United States, there is a comprehensive quality framework which captures data on access, experience, and outcomes, though it is limited to Medicare-provided hospice care. All Medicare-certified hospices are required to submit provider-level quality data to the Centers for Medicaid and Medicare (CMS) (Box 4.2). Several other tools to measure care quality are in use in the United States, covering different care settings or aspects of care. For example, the Bereaved Family Survey (BFS) for inpatient care – to be filled in by family members – comprises 19 items on the same areas as the HIS and CAHPS and is available in English and Spanish (National Care Experience Programme, 2021[116]). The QUAL-E tool was developed in 2002, includes 25 questions and aims at measuring symptoms, preparation to the end of life and the relationship with the health care provider.
Quality and outcome measures for hospice care in the United States stand out for their breadth and depth, covering a range of patient outcomes and experiences based on three separate data sources:
Data from the Hospice Item Set (HIS), submitted by hospices, is used to calculate the Hospice and Palliative Care Composite Measure – Comprehensive Assessment at Admission (HIS Comprehensive Assessment at Admission Measure). The measure is a composite of seven process-based measures which capture the share of patients for whom hospices performed seven essential care processes, including: addressing patient’s beliefs/values, treatment preferences, pain screening, pain assessment, dyspnoea treatment, dyspnoea screening, and patients treated with an opioid who are given a bowel regimen. The HIS has been endorsed by the National Quality Forum
Medicare claims data is used to inform two quality measures on the number of hospice visits in the last days of life, and the ‘Hospice Care Index’. The Hospice Care Index is itself a composite measure of ten separate process indicators focussed on the period between admission and discharge, calculated based on Medicare claims. The indicators cover: continuous home care (CHC) or general inpatient care, gaps in skilled nursing visits, early live discharges, late live discharges, burdensome transitions, per-beneficiary spending, skilled nursing care minutes per routine home care (RHC) day, skilled nursing minutes on weekend, and visits near death.
Additionally, the Consumer Assessment of Healthcare Providers and Systems (CAHPS®) Hospice Survey containing several experience measures, for family members of those who receive hospice care, focussed on a range of different topics: communication with family members, timely support, respectful treatment, emotional and spiritual support, symptom and pain management, and perceptions of/willingness to recommend the relative hospice. Results from the CAHPS® survey are published online.
Source: (Centers for Medicare and Medicaid, 2021[101]).
In Denmark, there is a quality-framework for end-of-life care, though it is limited to specialised palliative care and does not contain any data for patients who require basic palliative care. The Danish Palliative Database was developed to monitor, evaluate, and improve the clinical quality of specialised palliative care in Denmark, and contains data on several indicators with accompanying care standards, based on data from the national patient register, and data registered by treatment units (Table 4.7). A report on the database is published annually, and further indicator development is ongoing, let by the database’s steering group. The data is disaggregated at regional level and allows some disaggregation by condition, enabling constructive comparisons. Tracking care quality and outcomes across regions and over time can facilitate constructive comparisons and help policy makers understand whether systems performance and individual outcomes are improving over time. The Danish Palliative Database also contains socio-economic data, enabling research into socio-economic variations in symptoms and outcomes.
In several other countries – such as France, Germany, and the Netherlands – there are no nationally-defined quality and outcome indicators, though efforts have been made in recent years to publish comprehensive national data on a range of relevant indicators, typically utilising and aggregating existing data from a range of sources. In France, the National Center for Palliative and End-of-Life Care publishes an Atlas of Palliative and End-of-Life Care in France every two years, which contains a range of relevant indicators, disaggregated by metropolitan areas (Fin de vie Soins Palliatifs, 2019[118]). It contains data on a range of indicators, such as the place of death, palliative care beds and human resources in palliative care, and models end-of-life trajectories. However, there is currently little data available on the experiences or outcome of care. Similarly in the Netherlands, development of the quality and outcomes framework spurred renewed focus on filling a significant gap in the availability of data on the quality and availability of palliative care (Palliaweb, 2022[119]). In 2019, PZNL published for the first time national palliative care figures drawing on a range of data sources and using a range of indicators to provide insights into the needs for palliative care, potential overtreatment in the last month of life, and the deployment of care providers in specialised in palliative care (Table 4.8). Additionally, PZNL publishes national-level data on several indicators with quality components, such as the number of palliative care teams in hospitals. PZNL’s data collection utilises data from existing sources and is regularly updated (Palliaweb, 2022[119]). Germany is currently conducting the PallCompare project, a six-year project aiming at collecting surveys on the use of palliative care in the country, its quality and cost (Gemeinsamer Bundesausschuss, 2022[120]).
Patient-reported indicators in end-of-life care are limited
Where there are national-level indicators of care quality, they are often focussed on access to services rather than the experiences or outcomes of care. Even ‘top performers’ in terms of data infrastructure have considerable scope for improvement: currently, no country has national-level data which provides a holistic overview of access to, experience of, and outcomes of end-of-life care across all care settings, and there is considerable variation across countries as to the breadth of care quality indicators. Many of the key domains and principles that constitute high-quality end-of-life care – including ensuring end-of-life care is patient-focused and appropriate – cannot be achieved without good knowledge of the patient’s preferences, background, experience, and other concerns. Without getting the input of the patient – and their families and carers – directly, much of the information valuable to making informed choices that would improve the quality of their care is lost (OECD, 2021[121]).
Less than half of OECD reported that they have put in place mandatory patient- or carer-reported experience or outcome surveys to help inform the quality of end-of-life care (OECD, 2020-2021[13]). Just two of 25 countries, France and Korea, report that such patient- or carer-reported measures are required at the national level, while a further 10 countries (40%) report that requirements for collecting patient- and carer-reported measures in end-of-life care are dependent on the region or area. More than half (52%) of countries report that collecting patient- or carer-reported measures in end-of-life care is not required (OECD, 2020-2021[13]).
Around half of the responding countries (13 out of 25) held no system in place to monitor and evaluate palliative care experiences and outcomes such as patient reported outcomes and measures. In Australia, Ireland and New Zealand, the Palliative Care Outcomes Collaboration collects patients’ outcomes to measure quality of end-of-life care. The indicators measure responsiveness to urgent needs, pain management and timely commencement of palliative care, among other things. Between 2020 and 2023, Australia will expand PCOC into residential aged care, embedding a framework and protocol for routine clinical assessment and response across all aged care settings (PCOC, 2022[122]). Internationally comparable quality indicators are still rare, making cross-country benchmarking difficult to perform. Some efforts are in place to collect internationally comparable indicators.
Beyond systems and provider-level quality and outcome measures, several country-level initiatives have been developed to collect patient reported data and provide insights into individual outcomes of care. For example, in Australia, the government-funded Palliative Care Outcomes Collaboration is open to all providers of palliative care services and aims to improve the quality of palliative care through the development of a framework intended to be integrated into regular clinical assessment (University of Wollongong Australia, 2022[123]). The Palliative Care Outcomes Collaboration (PCOC) in Australia is a national palliative care outcomes and benchmarking programme that aims to improve patient outcomes, including pain and symptom control. PCOC involves a framework and protocol for routine clinical assessment and response. By embedding the framework into routine clinical practice, it develops a common clinical language that helps identify and respond to needs; improves access to palliative care; and generates consistent information to plan and deliver care. The Palliative Care Outcomes Collaboration (PCOC) has produced an improvement in patients’ outcomes in Australia. The framework regularly measures indicators of the patient’s physical and psychological outcomes, as well as carer-related measures. Since its introduction in 2006, the Palliative Care Outcomes Collaboration has increased its coverage from about 30 sites covering fewer than 30 000 patients, to nearly 180 sites providing palliative care services, with a reach of over 150 000 patients (Palliative Care Outcomes Collaboration, 2019[124]). The success of the Palliative Care Outcomes Collaboration has led to further adoption of the programme outside of Australia, including in Ireland – where it has been launched on a voluntary basis – and New Zealand.
In Italy, while national-level quality indicators for palliative care are not yet widely used, there have been some local innovations in the use of patient-reported outcome and experience measures. In the region of Toscana, the local hospital of Biella and the research centre of Istituto Superiore Sant’Anna di Pisa collected PROMs and PREMs from people with cancer between 2019 and 2021. The hospital collected PROMs and PREMs entirely digitally and from their homes. The forthcoming national cancer care also recommends the collection of further quality indicators of palliative care (e.g. early access to palliative care, quality of life, pain prevalence) (Ministry of Health Italy, forthcoming[125]).
Further efforts are necessary to agree on comparative international measures of care quality at an individual level. As mentioned in Chapter 1 of this report, countries are lacking a shared definition of end-of-life care. Efforts should thus include reaching a common understanding regarding the definition of end-of-life care, to ensure the design of internationally comparable indicators. The United Kingdom has created (first in 1999 and then updated over time) the Palliative Care Outcome Scale. It consists of questions on outcomes of care, but it also includes questions around communication and quality of care, and it is available in three versions, one for the patients, one for the caregivers and one for health care staff. 1 274 individuals, groups or organisations from 74 countries have registered to use POS, yet it appears to be used for specific population with limited sample size rather than a country-wide and systematic use of the tool (Collins et al., 2015[126]). The McGill Quality of Life Questionnaire (MQOL) was first developed in 1995 and it was later revised and expanded. It measures four domains: physical, psychological, existential/spiritual, and social. The four domains are balanced, and the physical aspects are not predominant, an element that distinguishes the MQOL from other similar questionnaires. Another instrument is the Cambridge Palliative Assessment Schedule (CAMPAS-R), which is specifically built for people receiving palliative care at home. In 2022, the National Care Experience Programme in Ireland developed the first national end-of-life care survey, which will ask relatives of people who died no more than three months before the survey about the experience of people who were cared for in hospitals, nursing homes, hospices or their own homes during the last months of life (National Care Experience Programme, 2021[116]).
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Notes
← 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. For the classification of diseases see Chapter 2 of this report.
← 3. The only exception can be found in the dopamine receptor antagonist DDDs for Males, in Iceland.
← 4. Questions referred to the last two days of life.
← 5. i) providing access to opioids without unnecessary regulatory barriers, ii) compulsory education on this topic for all undergraduate degrees for health care professionals, iii) adequate supply and stock of opioids, iv) nationally consistent policies for opioids prescribing, v) national digital monitoring of opioids prescriptions, vi) improved co-ordination between palliative care teams and acute care for the provision of opioid, vii) review the Palliative Care Schedule of the Pharmaceutical Benefit Scheme (PBS), viii) review the Medicare Benefits Schedule (MBS) for palliative care.
← 6. Pharmaceutical companies have played a significant role in increasing the (mis)use of opioids, through the use of marketing campaigns directly targeting physicians and patients, sometimes dismissing the risks linked to the use of opioids (OECD, 2019[20]). According to the Lancet Commission, the use of opioids could become safer through policies that ban the direct marketing of opioids between pharmaceutical companies and health care providers (Bhadelia et al., 2019[52]).