Analyses

Palliative care puts the patient and family at its centre, not the cancer diagnosis

Palliative care aims to improve the quality of life of patients undergoing life-threatening illness. It encompasses more than physical challenges related to the illness, including also psychological, social or spiritual needs of both the patients and their families¹. At its core, palliative care is person-centred rather than focused on the disease².

By putting people at its centre, palliative care can reduce suffering by early identification and treatment of symptoms such as pain or difficulty breathing and by providing more tailored support to patients and their families and communities. As such, it should involve the care by a multidisciplinary team including physicians, nurses, pharmacists, physiotherapists, social workers and support workers, among others¹. In cancer care, these professionals can work alongside oncology teams from the time of diagnosis all the way to end-of-life care. 

Adequate and timely referral to palliative care is associated with improved quality of life, patient and family satisfaction and, potentially survival, while often reducing costs of care by reducing unnecessary hospital admissions and use of healthcare resources^1,3. 

Integration of palliative care should happen early on the disease trajectory and not just as a last stage

Palliative care is often thought of as the last stage in the progression of the disease, and in most healthcare systems, that is the case leading to an almost interchangeable use of the terms palliative care and hospice. However, palliative care should be introduced earlier and alongside other medical care measures throughout the trajectory of the illness as it aims to improve the quality of life and to prevent suffering. On the other hand, hospice is considered a subset of palliative care that focuses on the last stage of life. Indeed, ideally the number of patients who would benefit from palliative care would be higher than those benefiting from hospice care².

Most European countries provide palliative care services below what is recommended

It is estimated by the European Association of Palliative Care that each year 4.4 million people in the WHO European Region would benefit from palliative care (of these, 14 000 are children)¹. It also estimates that to have an adequate offer of palliative care services, there should be two specialized palliative care services per 100 000 people (one home care team and one hospital team) to ensure adequate services at all levels of care¹. A study estimated that the provision of services across 49 countries in the European region is of 0.8 services per 100 000 people, well below the recommended value. This estimate varies widely with countries such as Austria and Ireland, for example, reaching 2.2 and 1.9 services per 100 000 people, respectively⁴. It also varies between regions within countries¹.

The successful implementation of palliative care services is often hindered by misconceptions of what palliative care is and what it can offer as well as cultural beliefs on the end of life

The offer of palliative care services in the European region has increased 47% since 2007¹ as there is a growing recognition of how they can improve overall quality of life while also reducing end-of-life costs. However, there are still some barriers to the implementation of palliative care, namely the misconception that palliative care is just care at the last few weeks of life; this misconception is spread widely, from policy-makers to health professionals¹. As such, common perceptions often reduce palliative care to “passive” care when there is “no more hope”. In cancer care, palliative services are often suggested only at a point when curative treatment is stopped instead of alongside it⁵.

Broader economic and social determinants of healthcare delivery should also be taken into consideration. For example, the cancer care market can produce incentives for the development and use of advanced anticancer treatments in the later stages of the disease, with one large study in France showing that in the last two weeks of life 20% of patients still received chemotherapy⁶. This often leads to symptom-directed and person-centred care being placed second. Palliative care teams help to shift the focus from just treating the disease to providing truly patient-centred care that takes into account the overall quality of life of patient and family⁵. 

Other barriers often mentioned are cultural beliefs around death and even fears that using opioid analgesia earlier in the disease trajectory will lead to substance abuse later on¹. 

As societies age, discussing the cost-effectiveness of palliative care services becomes unavoidable

The need for palliative care services in Europe is due to continue to grow with the ageing of societies and also the overall increase in incidence of noncommunicable diseases, including cancer as the single biggest contributor to palliative care needs⁷, For example, in Western Europe the share of its population over the age 65 will grow from 19 per cent in 2020 to 28 per cent in 2050⁸. Simultaneously, the number of new cases of cancer in Europe is estimated to increase by 22.5% by 2045⁹.In many European countries, the higher per person spending levels are seen near the end of life, making the question of how to make palliative care cost-effective unavoidable¹⁰.

For Czechia, a crucial strategy was to showcase first how investing in palliative care can be cost-effective. This facilitated the expansion of the services later on. Indeed, quality palliative care services have been shown to reduce costs by providing a more active assessment of care needs and decreasing unnecessary hospitalizations and procedures, while not shortening survival¹⁰. In France, by fostering dialogue and promoting the knowledge of what and how palliative care can be and how it can save costs, the strategy aims to promote further palliative care initiatives.

Czechia invested in mobile teams and in a new reimbursement mechanism to improve accessibility and widespread use of palliative care

Recognizing the need to improve the offer of palliative care services and to decrease the inequalities in palliative care services across the country led to the launch of a three-year pilot project by the Ministry of Health with the Czech Society of Palliative Medicine and the General Health Insurance Company entitled “Mobile Specialised Palliative Care (MSPC)” in 2015. The project established palliative care services at home to test the hypothesis that the provision of palliative care at home could lead to higher quality of care while decreasing variations across the country, at a similar or lower cost than inpatient services. Cancer patients were also included in this preliminary stage.

After its initial pilot stage, the preliminary results in 2017 showed a record high satisfaction by patients and families with an overall lower cost compared to the standard of care with 93% of enrolled patients dying at home without emergency room visits or hospitalizations. These results led to the inclusion of this home palliative care model in the packages of all Czech health insurance companies.

France established a dedicated National Centre to boost public and professional understanding of palliative care 

France has been working towards improving its palliative care services through sucessive plans and expansions. In 2015, its expansion recognized that palliative care encompasses more than terminal stages, which ultimately led to the creation of the National Centre for Palliative and End-of-Life Care/Centre National des Soins Palliatifs et de la Fin de Vie (CNSPFV) in 201611. 

The centre has as its mission to increase the understanding by the public and other stakeholders of the unique challenges in palliative care as well as to encourage societal and ethical debates around it. It fosters a participatory governance model and works as an observatory and resource and dialogue centre¹¹.

As misconceptions around palliative care are often documented as a barrier to a successful implementation of quality services, this national centre works as a knowledge hub, adapting information to different audiences, such as resources on advanced cancer progression¹². It also promotes the inclusion of lived experience voices in the materials produced through different formats (for example, websites, podcasts, videos and easy-to-read formats)¹¹.

Conclusions

The examples from France and Czechia show rather different and complimentary approaches to improve palliative care. On one hand, quality and accessibility of services are crucial and finding ways to make them accessible by the population is key. This is a common approach to many public health problems and the inavailability of quality palliative care services has led to further flexibility in mobile teams and reimbursement schemes in Czechia.

On the other hand, and unlike other public health issues in which there is a consolidated understanding of their added value, palliative care services face unique challenges around cultural and societal beliefs as to what they are and their role in relieving suffering and facing end of life. So to tackle this unique challenge, France dedicated a National Centre to foster dialogue around what palliative care is and what it can be.

Other key considerations to improve the access to palliative care is to fully integrate it into cancer care pathways. Some other options include outpatient palliative care clinics to integrate care early in the trajectory of the disease, or have structured training initiatives for professionals such as mandatory palliative care rotation for oncology specialists³ or specific training for navigators in countries with navigator programmes for cancer care.

References