A person is said to be at the “end of life” when they are suffering from a serious and incurable disease, in an advanced or terminal phase, and without hope of recovery. Emmanuel Macron announced a bill by the summer of 2023 to change the framework for end-of-life support.
[Mis à jour le 3 avril 2023 à 15h00] The President of the Republic Emmanuel Macron spoke on April 3, 2023, following a meeting with the members of the citizens’ convention on the end of life (created in December 2022 to reflect on the need to developing the framework for end-of-life support in France depending on the situations encountered by patients) and declared that they wanted a bill “by the end of summer”. The text will have to be drawn up by the government in co-construction with parliamentarians. Emmanuel Macron also announced “necessary investments” to feed a “ten-year plan” on the palliative care, deemed insufficient by the Convention. Currently in France it is the Claeys-Leonetti law of February 2, 2016 (after a first version in 2005) which frames the rights of terminally ill people life. It created a right to continuous deep sedation maintained until death, for terminally ill patients in great pain. It tends to the development of palliative care and allows the patient to refuse treatment. In this case, the doctor has an obligation to respect his wishes, after having informed him of the consequences of his choice. Euthanasia and assisted suicide are prohibited in France, unlike Belgium, Spain or the Netherlands. But in a report validated on April 2, 2023, the Citizens’ Convention answered three-quarters “yes” to “active aid in dying” such as assisted suicide or euthanasia. What does end of life mean? Home ? To the hospital ? In Ehpad? What is the law in France? For what situations?
What is the definition of “end of life”?
As reminded by Ministry of Healthin France, a person is said to be at the “end of life” when they suffer from a condition or serious and incurable disease, in advanced or terminal phaseand therefore when its vital prognosis is engaged. The medical profession can no longer cure her. This person can benefit fromsupport in palliative care until the end of his life. This support will be different if the sick person is at home, in an accommodation establishment for dependent elderly people (EHPAD) or in the hospital.
The signs of an end of life are extremely variable depending on the person. However, the terminal phase leading to death may be preceded by certain warning signs For example :
- loss of appetite (the person may refuse to drink or eat or become unable to swallow),
- excessive fatigue or sleep (the person tends to sleep or doze a lot),
- weakness of the whole body and a drop in muscle tone (the person is unable to make movements),
- difficulty breathing or bronchial obstruction (the person may breathe irregularly (Cheyne-Stockes breathing), “groan” (produce a hoarse sound while breathing), or have sleep apnea…)
- decreased acuity or mental confusion (the person speaks less and less, answers with difficulty or has incoherent remarks…)
- social isolation, anxiety or even depression (the person loses interest in the world around them)
- physical signs like paleness, cold extremities, purplish “mottled” skin which reflects a slowing of blood circulation.
What are the steps to support the end of life in France?
The principle laid down by law in France is that the sick person, conscious and able to express his will, can refuse any investigation or any treatment even if this refusal puts his life in danger. On the other hand, if the person is not at the end of life, the doctor has the obligation to do everything possible to try to convince him to accept the necessary care. If a sick person is no longer able to express their wishes, they must first have designate a “person of trust“. Each adult person can designate a person of trust who will be consulted in the event that they are no longer in a position to decide. They can also write advance directives in order to express, in advance, their wishes regarding the organization of their end of life. These can be entrusted to the trusted person. The Ministry of Solidarity and Health entrusted the national center for palliative and end-of-life care (CNSPFV)the mission to support patients, caregivers, loved ones and healthcare professionals.
According to the 2002 World Health Organization definition, palliative care is all the care provided to people with a serious illness, chronic, “progressive or terminal, involving his vital prognosis” and this, regardless of his age. Palliative care in no way replaces curative care, but complements it. The referring doctor – usually a hospital doctor – the general practitioner as well as the health care team that accompanies the sick person and his entourage, direct towards the mode of care best suited to the situation. A interactive map of palliative care facilities is available on the CNSPFV website. A telephone line is available to patients and relatives for information and guidance at: 01 53 72 33 04 (cost of a local call).
A patient at the end of life can, if he wishes, end his days at home. He can therefore benefit from palliative care at home provided by a multidisciplinary medical team, namely:
- By calling on a home hospitalization health facility (HAD) who carry out, on medical prescription, technical and complex care.
- By calling on a home nursing service (SSIAD) who can, on medical prescription, carry out nursing care and washing, often in relay of the HAH, in particular when the patient’s needs become lighter.
- By calling on liberal nurses who can, on medical prescription, carry out nursing care and washing.
- By calling on palliative care networks who ensure the coordination of all stakeholders.
The decision to carry out this care is always taken by the attending physician, with the agreement of the patient and his family. These treatments are 100% covered by health insurance.
According to the latest figures from the National Center for “End of life – Palliative care”, 65% of patients die in hospital in France. A person at the end of life can benefit from palliative care in a hospital either,
- Being cared for in a palliative care unit (USP): a care team (doctors, nurses, psychologists, caregivers, physiotherapists, dieticians, etc.) takes care of a patient at the end of life. In France, there are 139 USPs, or the equivalent of 1,500 beds dedicated to the care of end-of-life patients.
- By benefiting from the support of a mobile palliative care medical team who intervenes on request and who travels around the hospital. This team is generally made up of a doctor, a nurse and a psychologist specialized in palliative care. In France, there are 424 mobile palliative care teams.
A person at the end of their life can spend the rest of their days in an accommodation establishment for dependent elderly people (EHPAD) and benefit from “comfortable” care provided by EHPAD medical staff trained in palliative care. This care is aimed at relieving pain, alleviating physical suffering, safeguarding the dignity of the sick person and supporting those around them. Depending on the needs of the sick person, the EHPAD can also request the help of a mobile palliative care team to accompany a resident. If the premises allow it, the resident’s family can benefit from a room within the EHPAD to stay at the bedside of their loved one. In the most complex cases, end-of-life support cannot be provided in an EHPAD and the patient will have to be transferred to a hospital structure, either to a palliative care unit or to a hospital with identified care beds. palliatives (LISP).
What drugs are used for end of life?
The pain felt during the end of life can be relieved, depending on its intensity, by painkillers Tier 1 (paracetamol, aspirin, nonsteroidal anti-inflammatory drugs), level 2 (dextropropoxyphene combined with paracetamol, codeine, sublingual buprenorphine or tramadol) or level 3 (opioids: morphine, fentanyl, hydromorphone and oxycodone). For severe cancer pain: strong opioid treatments (morphine, oxycodone, fentanyl, tapentadol, etc.) are recommended by the WHO, particularly after the failure of previous painkillers. Other common end-of-life symptoms include:
- shortness of breath can be relieved by benzodiazepines or morphine,
- bronchial obstruction can be relieved by corticosteroid therapy,
- nausea and vomiting can be relieved by antiemetics, corticosteroids or anxioxylites (lorazepam, alprazolam)
- anxiety and depression can be treated with a follow up psychological, antidepressants (fluoxetine) or anxiolytics (bromazepam…)
What is continuous deep sedation?
There law of February 2, 2016 makes it possible to better respond to the request to die with dignity by better taking charge of suffering, and by clarifying the use of deep and continuous sedation, until death, in the terminal phase. Continuous deep sedation cannot be administered only at the request of the patient and must be carried out at home, in a residential establishment for dependent elderly people or in a health establishment. Attention, deep sedation is different from euthanasia.
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