Affected by a serious and incurable disease, in an advanced or terminal phase, and without hope of recovery, a person is said to be “at the end of life”. She can benefit from palliative care, at home, in hospital or in an EHPAD. The Ethics Committee has issued an opinion on “active assistance in dying strictly supervised”.
[Mis à jour le 13 septembre 2022 à 10h42] The National Ethics Advisory Committee made this Tuesday, September 13 end of life noticeopening up the possibility of dying in a strictly controlled manner. Emmanuel Macron announces for his part the establishment of a citizens’ convention, lasting 6 months, supposed to succeed to a text of law in 2023. This complete has the Claeys-Leonetti law (February 2, 2016, after a first version in 2005) which offers new rights for patients and people at the end of life, creating 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. What does end of life mean? Home ? To the hospital ? In Ehpad? What is the law in France? For what situations?
Definition: what is the end of life?
As reminded by Ministry of Healtha person is at the end of their life when they suffer from a condition or serious and incurable disease, in advanced or terminal phase, and therefore when its vital prognosis is engaged. The medical profession can no longer cure her. This person can benefit frompalliative care support until the end of his days. 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.
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.
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), stage 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 followed psychological, antidepressants (fluoxetine) or anxiolytics (bromazepam…)
What is continuous deep sedation?
Passed in February 2016, the Claeys-Leonetti law allows a right to “continuous deep sedation“until death for people in the terminal phase. This is a profound alteration of the patient’s consciousness, in order to to avoid any suffering and not to subject him to unreasonable obstinacy until his death. 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. Here are the differences listed by the Haute Autorité de Santé in January 2020:
| Deep and continuous sedation | Euthanasia | |
|---|---|---|
| Intention | Relieve intractable pain | Respond to the patient’s request for death |
| Medium | Altering Consciousness Deeply | cause death |
| Procedure | Use of a sedative drug in appropriate doses to achieve deep sedation | Use of a lethal dose drug |
| Results | Deep sedation continued until death due to natural disease progression | Immediate patient death |
| Temporality | Death occurs in a time that cannot be predicted | Death is caused quickly by a lethal product |
| Legislation | Authorized by law in France (Claeys-Leonetti law) | Illegal in France |
On February 10, 2020, the High Authority for Health and the Ministry of Health announced that midazolama powerful sedative from the benzodiazepine family until now reserved for use in hospitals, will be available from June in town pharmacies, after a modification of the marketing authorization by the ANSM. It can now beused by physicians caring for patients at home […] after having entered into an agreement with a mobile team or a hospital palliative care service in order to guarantee the collegiality of the decision as well as the support and follow-up of the patients”. This medicinal product is recommended in first intention by the High Authority of Health to implement “deep and continuous sedation”, both in hospital and at home.
What are the steps and procedures for the end of life?
• 1st step: designate a trusted person
If the sick person’s state of health does not allow him to give an opinion or inform the medical team of his decisions, a trusted person should be designated. It is possible to designate a trusted person in two cases:
- If the person wishes to be supported or accompanied in decisions concerning their health (for example if they are hospitalized).
- If the person integrates an EHPAD or if they call on a home help service and wish to be helped in their procedures
The trusted person can attend, with the patient’s agreement, medical appointments, be consulted by doctors if the patient is unable to express himself, accompany him in his steps and in taking decisions about his health. The trustworthy person can also send the sick person’s advance directives. Nevertheless, his opinion is purely advisory and in no case decides for the patient. The support person must be a relative (spouse, family member, friend, primary care physician) whom the patient fully trusts and who accepts this role. The designation must be made in writing. Be aware that it is possible to change your trusted person at any time or to decide to cancel your appointment. In this case, it is sufficient to report it in writing.
• 2nd step: write your advance directives
Advance directives correspond to a written, dated and signed document that mentions the last wishes on the care of a person at the end of life. They will allow doctors to make their decisions as to the medical acts and treatments to be given or not in the event that the person has become unconscious (the person is in a coma for example) or is no longer able to express their wishes. Writing advance directives is not compulsory but allows you to make your wishes known during the end of life (limit or stop current treatments, be transferred to intensive care, be placed on artificial respiration, undergo surgery, etc.)
Sources:
- National information portal for the autonomy of the elderly and support for their loved ones (Ministry of Solidarity and Health).
- National Center for End of Life and Palliative Care.
- “The end of life”, Ministry of Solidarity and Health.