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02 August 2024 | Country Update
End-of-life care draft bill: France plans to further invest in palliative care and legalize assisted death
Palliative care
In France the main palliative care providers are acute care hospitals which provide palliative care in specific palliative care units (unités de soins palliatifs, USPs) as well as in beds dedicated to palliative care in other hospital units (lits identifiés en soins palliatifs, LISPs). In 2019 there were 160 USPs with 2.8 beds per 100 000 inhabitants and 8.4 LISPs per 100 000 inhabitants. It is estimated that less than 7% of the patients who died in hospitals in 2019 died in a USP and about 13% in an LISP (Cousin & Gonçalves, 2020).
Palliative care can also be provided, although less commonly, in SSR. Moreover, hospitalization at home (HAD) is proposed as an alternative for receiving palliative care at home. Residential nursing homes can also propose HAD to their residents since 2007 (Decree no. 2007-241 of 22 February 2007). The law of February 2016, which strengthened patients’ rights in end-of-life care, introduced that health professionals should inform each patient of the possibility of receiving palliative care at home (or in a nursing home) if their situation allows. In France certain medications used for easing pain at the end of life can only be prescribed in hospitals or during HAD, hence nursing homes can only provide these pain medications by establishing HAD protocols. Palliative care in nursing homes can improve the quality of the end-of-life period but has not been widely developed. It is estimated that in 2017 less than 8% of nursing home residents who died benefited from palliative care by dedicated providers in their residence or in hospital (Penneau, 2022).
Finally, there are mobile palliative care teams (équipes mobiles de soins palliatifs, EMSP), which do not provide palliative care, but assist and train in palliative care the health care providers involved in end-of-life care in hospitals, at a patient’s home or in residential nursing homes. These are multiprofessional teams, usually involving physicians, nurses and part-time psychologists and physiotherapists, hired by a hospital, often a palliative care unit (Bohic et al., 2019). These teams also provide psychological and social support to families. In 2019 there were 428 mobile teams, or 0.7 teams per 100 000 inhabitants (Cousin & Gonçalves, 2020).
Altogether, palliative care supply is quite limited and unequally distributed in France, despite an increasing number of providers over time (Cousin & Gonçalves, 2020; DREES, 2021c). The latest national plan for palliative care, launched for the period 2021–2024 with a budget of €171 million, aims to create palliative care units in hospitals in the 26 local authorities without any palliative care services, to increase collaboration between professionals in the hospital and primary care sectors, and to reinforce palliative care at home and in nursing homes by creating additional mobile teams (MoH, 2021b).
The conclusion of the citizens’ convention on end-of-life, which gathered 184 citizens drawn by lot, revealed an inadequate legal framework for end-of-life care support and a public demand for authorising assisted death. To tackle these issues, the government proposed a bill in early 2024 that renews the approach to pain and end-of-life care, with a wider concept of “supportive care”. A new type of care facility, “support home”, will be created to provide support for terminally ill patients and their families. Patients diagnosed with a life-threatening illness will systematically be proposed to anticipate and coordinate their care and establish a personalised plan for end-of-life. Anyone can also prepare in advance an end-of-life support plan specifying their preferences.
The second part of the bill concerns assisted death. It authorises the provision of a lethal substance to a person who requests it, either to administer it themselves or with the help of a doctor, nurse, relative or a volunteer of their choice. This is reserved for patients over 18 who have an incurable condition that causes intolerable pain. The cost of the medication, which would be available after a medical assessment and prescription, will be covered by the national health insurance fund.
The bill gave rise to intense debates in the Parliament but was close to being voted on before the dissolution of the National Assembly in June 2024. A legislative draft, based closely on the former bill, was submitted to the new assembly in July 2024.