In a detailed 124-page report, the French Audit Office has published a statement on palliative care and is calling for its reinforcement.
Under the title “Palliative care, a treatment service which needs reinforcement”, the report was ordered by the President of the Social Commission of the French National Assembly in July 2022. Its overall view is low key, as indicated by the title, and it hinges around three major themes:
- An overall situation which is improving but with many needs as yet far from satisfied,
- A more wilful public policy but with an excessively timid administrative organisation,
- The access to palliative care is too centred on hospitals and remains inadequate in towns.
The Audit Office has put forward ten recommendations to improve the tools for evaluating and monitoring the availability and needs, in order to be able to manage the development required during the coming years, and to improve the access for patients.
The statement on the current palliative care services
Access to palliative care is a right, as recorded in article L1110-9 of the French public health code. It includes treatment and accompaniment: “Any sick person whose condition so requires has a right to access palliative care and accompaniment“. This right comes under the constitutional right to the protection of human dignity, the consideration of suffering is “one of the most important aspects of such dignity“.
The definition of palliative care, as recorded in the public health code is quoted at the beginning of the report: “active and continuous care provided by an interdisciplinary team in an institution or at home. It is intended to relieve pain, to appease psychic suffering, to safeguard the dignity of the sick and to support their entourage“. The authors also stress that “the concept of palliative care has in fact evolved: the notion of a curative phase followed by a palliative phase of a sickness has been replaced by a coordinated treatment adapted throughout the sickness.”
Starting from a Canadian definition of palliative care requirements which is based on a list of pathologies, the Audit Office estimates that slightly over 60% of those who died during the past year should have been able to benefit from palliative care. This estimate is highly dependent on the list of pathologies. In an appendix, the report uses three distinct methodologies and achieves percentages of between 62% and 80%.
According to the Audit Office, the coming increase in needs will be linked essentially to the aging of the population between now and 2050. The estimate of requirements are due to increase from 379,000 to 470,000 by 2046.
In order to estimate “the current availability”, the authors admit that they do not have the necessary information. However, they claim that the availability has increased over the last years. Thus, in hospitals, between 2013 and 2021, approximately 1500 beds have been added to reach a new total of 7529 beds. Major regional disparities subsist however. It is more difficult to evaluate the situation for treatment in towns and at home.
The total public expenditure on palliative care in 2021 was evaluated at 15 billion euros, representing a 25% increase since 2017.
Limits of the public policy over the last few years
Since 1999, the law guarantees “The right of access to palliative care both within medical or medico-social institutions and at home.” Since then, several plans have succeeded one another, with two periods not covered. The report notes that “The 2008-2012 plan provided a definite boost to palliative care in France, with three major themes: continued development of the hospital services and expansion of non-hospital services, the elaboration of a research and training policy and the provision of accompaniment services for family circles“. Despite the stated ambitions in the 2015-2018 plan, the actual impact was “modest”, the report identified a lack of management tools, i.e. numerical targets together with a calendar. This shortfall has repercussions both on the deployment and on the possibility of monitoring and evaluation. The report directly focuses on the vague nature of certain themes in the plan: “Measure 9 linked to theme 3 « The development of palliative care in care homes” refers, for example for the presence of night nurses in care homes, to a working group to “put forward proposals” or to “partnerships, agreements or evaluation tools”, a measure more akin to a statement of (good) intent than a plan of action. Finally, the report considers the 2021-2024 plan: it “suffers from the same failings as the previous plan, with no qualitative or calendar targets“. This situation appears relatively common.
According to a report by the OECD, on 23 states studied, 14 have no programme nor strategy. The authors suggest that the United Kingdom and Austria could inspire France for its strategy.
Moreover, these plans suffer from not being included in the national health strategy, and they are not linked to the other plans targeting pathologies (cancer plan, neuro-degenerative disease plan etc.). Among other examples quoted: “the 3rd plan for pain relief included measures concerning palliative care in care homes, the training of care personnel and on the collaboration between the different players. However that plan has not been renewed since 2010“.
According to the authors, there should be a single management authority at the national level with links to the Regional Health Agencies.
Considering the prickly question of funding, the report points out that “palliative care, when practiced at the correct moment, and early enough during the treatment sequence, involves less cost compared with that provided in the absence of palliative care. This result is based on the analysis of several French and British studies, under the terms of which the notion of therapeutic sobriety, inherent in palliative care accompaniment, would allow significantly less costly treatments“. This result underlines the compatibility, through a palliative approach, between the quality of the end of life and the control of the cost of treatment.
The widespread distribution and digitisation of advance directives, is a theme being pushed by the Audit Office. According to the High Authority for Health (HAS), 70% of Americans have written their advance directives, whereas in France, the percentage is unknown but is probably very low.
Concerning end of life accompaniment, the report notes the existence in some states (Denmark, Austria) “at a different level from voluntary help-lines, of voluntary services “. The association “Visitatio -voisins et soins” (neighbours and care), of the same inspiration, is quoted by the Audit Office. The authors recommend the development of such “non-medicalized accompaniment under palliative care” which “stems, largely, from the empathy and the capacity for accompaniment, by a presence, chosen words, and benevolence, for the patient often fearful of the imminence of death. Trained and supervised voluntary workers, could be a source of appeasement and generalisation of the palliative culture, which must be benevolent. The Health Minister could therefore launch without delay, in the context of the forthcoming 2024-2027 plan, a working group on the generalisation of voluntary work for end of life accompaniment“.
Extension of the access to palliative care outside hospitals
53% of French citizens die in hospitals (2018 statistic), but 60% would prefer to die at home (CNSPFV survey).
The availability of care in the home and in care homes is inadequate. Some 150,000 die each year in care homes, and “palliative care in care homes is one of the key challenges for the development of access to palliative care, but according to all the Regional Health Agencies questioned, the main obstacles are, the same as for care in towns, other than the declining numbers of medical staff, combined specifically with the shortage of available nurses, especially at night, inadequate training of nursing auxiliaries and of all the non-medical personnel working in care homes“.
The report therefore supports local training and coordination initiatives between the mobile teams and the care homes. It calls for a “far-reaching training plan for non-medical staff“.
In its conclusion, the report summarises its recommendations for reinforcing the availability of palliative care and making the right to palliative care effective. A footnote specifies that “in addition to the debate developing around assisted suicide, certain associations claim that if the availability of palliative care could cover all needs, the demand for assisted suicide would be less“. As a result, various studies have shown the very low persistence of such requests when patients are properly looked after.
But beyond any “offer and demand” type economic approach, it is the principle of human dignity and the right to care which must lead the public authorities for the establishment of the 2024-2027 plan. Such dignity is not compatible with any project for the legalisation of any form of administered death.