Affected by a serious and incurable disease, in an advanced or terminal stage, and with no hope of recovery, a person is said to be “at the end of life”. You can benefit from palliative care, at home, in a hospital or in an EHPAD. The Ethics Committee issued an opinion on “strictly supervised active death assistance”.
[Mis à jour le 13 septembre 2022 à 10h42] The National Ethics Advisory Committee did this on Tuesday, September 13th end of life noticeopening up the possibility of dying in a strictly controlled manner. Emmanuel Macron announces the establishment of a city convention, lasting 6 months, which should be successful to a bill in 2023. This suit has the Claeys-Leonetti law (February 2, 2016, after a first version in 2005) that it offers new rights for patients and people at the end of life, creating a right to continuous deep sedation kept until death, for the terminally ill in great pain. It tends to the development of palliative care and allows the patient to refuse treatment. In this case, the doctor is obliged to respect his will, after informing him of the consequences of his choice. Euthanasia and assisted suicide prohibited. in France, unlike in 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 mentioned by Ministry of Healtha person is at the end of his life when he is suffering from a condition or severe and incurable disease, late or terminal stage, and therefore when its vital prognosis is committed. The medical profession can no longer cure it. This person can take advantage of itsupport for palliative care until the end of his days. This support will be different if the patient is at home, in a facility for the dependent elderly (EHPAD) or in a hospital.
End-of-life signs are extremely variable depending on the person. However, the terminal phase leading to death may be preceded by some Warning signs For instance :
- loss of appetite (the person may refuse to drink or eat or become unable to swallow),
- excessive tiredness or sleep (the person tends to sleep or doze a lot),
- weakness of the whole body and a decrease in muscle tone (the person is unable to move),
- difficulty breathing or bronchial obstruction (the person may breathe irregularly (Cheyne-Stockes breathing), “groan” (make a hoarse sound when breathing) or have sleep apnea …)
- decreased acuity or mental confusion (the person talks less and less, answers with difficulty or makes inconsistent remarks …)
- social isolation, anxiety or even depression (the person loses interest in the world around him)
- physical signs such as pale skin, cold extremities, “mottled” purplish skin. reflecting a slowing of blood circulation.
According to the definition of the World Health Organization of 2002, Palliative care is all 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 supplements it.
A patient at the end of his life can, if he so wishes, end his days at home. He can therefore benefit from home palliative care provided by a multidisciplinary medical team, namely:
- Calling a home hospitalization facility (HAD) who carry out, on medical prescription, technical and complex treatments.
- By calling to home care service (SSIAD) who can, on medical prescription, carry out nursing care and washing, often in the HAH relay, especially when the patient’s needs are lightened.
- Calling liberal nurses who can, on medical prescription, carry out nursing care and washing.
- Calling palliative care networks which ensure the coordination of all interested parties.
The decision to carry out these treatments is always made by the attending physician, with the consent of the patient and his family. These treatments are 100% covered by health insurance.
According to the latest data from the National Center “End of life – Palliative care”, 65% of patients die in hospital in France. A person at the end of life can also benefit from palliative care in hospital,
- Be cared for in a palliative care ward (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 the terminally ill.
- Benefiting from the support of a mobile medical palliative care team who intervenes on request and who goes through the hospital. This team is generally composed of a doctor, a nurse and a psychologist specializing in palliative care. There are 424 mobile palliative care teams in France.
A person at the end of his life can spend the rest of his days in an accommodation facility for the dependent elderly (EHPAD) and benefit from “comfortable” care provided by EHPAD medical staff trained in palliative care. This treatment 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, EHPAD may 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 inside the EHPAD to stay at the bedside of their loved one.
In more complex cases, end-of-life support cannot be provided in an EHPAD and the patient will have to be transferred to a hospital facility, either a palliative care unit or a hospital with palliative care beds (LISP).
What drugs are used for the end of life?
The pain experienced during the end of life can be relieved, depending on its intensity, by pain relievers Level 1 (paracetamol, aspirin, non-steroidal 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: WHO recommends strong opioid treatments (morphine, oxycodone, fentanyl, tapentadol, etc.), particularly after previous pain relievers have failed.
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 (lorazépam, alprazolam)
- anxiety and depression can be treated with a following psychological, antidepressants (fluoxetine) or anxiolytics (bromazepam …)
What is continuous deep sedation?
Approved in February 2016, the Claeys-Leonetti law grants a right to “continuous deep sedation“to death for people in the terminal stage. It is a profound alteration of the patient’s consciousness in order to avoid all suffering and do not subject it 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 facility for non self-sufficient elderly people or in a health facility.
Caution, 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 | Relieves intractable suffering | Respond to the patient’s death request |
| medium | Altering the consciousness in depth | 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 by natural progression of the disease | Immediate death of the patient |
| Temporarily | Death occurs in a time that cannot be predicted | Death is quickly caused by a lethal product |
| Legislation | Authorized by law in France (Claeys-Leonetti law) | Illegal in France |
On 10 February 2020, the High Authority for Health and the Ministry of Health he announced it midazolama powerful sedative of the benzodiazepine family until now reserved for use in hospitals, will be available from June in city pharmacies, subject to modification of the marketing authorization by the ANSM. Now it can beused by doctors who care 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 patients “. This medicine is recommended in first intention by the High Health Authority implement a “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 patient’s state of health does not allow him to express an opinion or to inform the medical team of his decisions, to trustworthy person should be designated. It is possible to designate a trusted person in two cases:
- Whether the person wishes to be supported or accompanied in decisions regarding their health (for example if they are hospitalized).
- If the person has an EHPAD or if they go to a home care service and want help with their procedures
The trusted person can attend, with the patient’s consent, medical appointments, be consulted by doctors if the patient is unable to express himself, accompany him in his steps and in making decisions about his health. The trusted person can also send the patient’s advance directives. However, his opinion is purely advisory and in no case decides for the patient. The trusted person must be a relative (spouse, family member, friend, general practitioner) whom the patient fully trusts and who accepts this role. The designation must be made in writing. Please note that you can change your trusted person at any time or decide to cancel the 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 own decisions about the medical acts and treatments to be administered or not in the event that the person has lost consciousness (the person is in a coma for example) or is no longer able to express their wishes. Writing advance directives is not mandatory but allows you to make your wishes known during the end of life (limit or interrupt ongoing care, be transferred to intensive care, undergo 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.
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