Citizens’ Convention 7th Session: Proposals for Improvement of the Accompaniment of the End of Life

Following a presentation on discernment and psychiatric disorders, the Citizens’ Convention on the end of life continued its work during this 7^th session from 3^rd to 5^th March. 67 proposals were submitted to a vote to improve “the current framework for end of life accompaniment” which will be included in the final document to be submitted to the government. Additionally, new votes were conducted on the question of active assistance in dying, which revealed some changes in positioning.

A round table at the Citizens’ Convention on discernment and psychiatric conditions

At the end of Friday afternoon, the Citizens’ Convention participants took part in a round table which included Doctor Saena Bouchez, a psychiatrist at the Lariboisière hospital, Doctor Sophie Moulias, a geriatric doctor at the APHP (Assistance Publique des Hôpitaux de Paris) and Doctor Jacques Grill, paediatrician neuro-oncologist at the Gustave Roussy Institute.

The aim of this round table was to help the citizens to evaluate to which extent the aged, children and people suffering from psychiatric disorders are capable of expressing a conscious and autonomous request for active assistance in dying (euthanasia or assisted suicide).

At the end of this round table, several lessons emerged:

• The gathering of the patient’s wishes demands consideration of the specific conditions of such situations:
  • Neuro-degenerative diseases may cause changes in the discernment of certain old age people, who sometimes wish their children to make decisions on their behalf.
  • With children, it is difficult to dissociate their word from that of their parents.
  • Certain psychiatric pathologies may be the cause of discernment disorders.
• Whether in the case of the aged or children, requests to die remain quite exceptional. Dr. Sophie Moulias even claims to have never experienced such a request. The aged may feel weary, suffer from isolation, sensorial loss, but nevertheless they do not ask to die.
• Today, the urgency is for better accompaniment of the sick and the aged. According to Dr. Sophie Moulias, solitude is the “true pathology of our society”.She claims, “social death affects many of the very aged, many living in rural areas. [….] Medicines will never be able to replace a human presence.” Echoing those words, Dr. Jacques Grill added: “Nowadays, it is not the law which prevents us from being humane with our patients, it is the shortage of humans to be there with the patients.“
• For the aged as well as for children, the legalisation of euthanasia and/or assisted suicide is not without risk :
• There is a risk, for the aged, that the decision is taken by families on their behalf.
• Similarly in paediatrics: “If one cannot manage to obtain words properly from the child, it is therefore a third party who makes the decision on the child’s behalf. This is a power afforded to parents, but it is an extremely dangerous power for them, because they continue to live after making the decision of euthanasia or assisted suicide for their child.” As explained by Dr. Jacques Grill.
• Finally, the legalisation of euthanasia is liable to discourage carers and constitute a reason for them to leave. According to Dr. Sophie Moulias, “the very mention of euthanasia, for the immense majority of geriatric carers is considered absolutely shocking.”
• Today, Dr. Saena Bouchez considers that psychiatry still lacks the necessary criteria to define disorders which are resistant to treatment and everything which could bring a patient to submit a request for active assistance in dying because their suffering could not be relieved.

67 proposals to improve end of life accompaniment

After working in groups all day on Saturday, in particular on the question of active assistance in dying (arguments for & against, procedures, access criteria), the citizens gathered for a plenary session on Sunday, to vote on the proposals for improving the “current framework” for end of life accompaniment, to be included in the final document for submission to the government. 67 proposals were selected on 9 themes.

• Respect for the choice and wishes of the patient: choice of the end of life location, background statement, reinforcement of advance directives and the person of confidence.
• Home care: therapeutic project, accompaniment of carers, involvement of volunteer associations, reinforcement of the control of deep and continuous sedation in the home, establishment of a constraint.
• Guarantee of the necessary budgets.On this theme, the citizens decided to apply the principle of “Whatever the cost” to palliative care, by reviewing the budget, their costing and funding system, and by improving the personnel working conditions. The system of charging per intervention (T2A) must be “questioned” or “reconsidered”.
• The development of palliative care.The lead proposal is “to achieve equal access to palliative care for all and everywhere“.
• Equal access to end of life accompaniment.The intention is to develop palliative care cover in all regions, reinforce coordination, establish a multi-disciplinary approach, the development of access to information on advance directives …A proposal was adopted to include in the law “an enforceable right for end of life accompaniment and palliative care.” It should be noted that such a right already exists since the 1999 law which establishes the right for all to palliative care.
• Information for the general public.On this theme, beyond the information campaigns and interventions by associations, the citizens adopted proposals to promote within society a “change of view” on old age and the end of life.
• Training of health professionals:The development of initial training in palliative care, the treatment of pain and the end of life and inclusion of a training course on “ethical questions, life and death” within their initial training cycle.
• Organisation of the care path.This theme covered highly diverse proposals, on specific procedures for neuro degenerative disorders, psychological and social accompaniment, training in sympathetic listening, the health-care profession, helpers and the establishment of records of deep and continuous sedations.
• Dedicated research and development means to better deal with suffering and to invent future remedies.

All these proposals are available on the Citizens’ Convention web site.

New votes on active assistance in dying

Furthermore, in a tweet dated 4^th March, Antoine d’Abbundo, a journalist at La Croix, revealed that new votes on active assistance in dying and the access conditions were held during this session.

On the question “Should access to active assistance in dying be opened?”, the results were little changed relative to the votes which took place during the previous session, other than slightly more people voted “No” (24% compared with 19%).

However, concerning access criteria, the citizens’ opinion appears to have changed since the previous session as 48% now consider that legal majority is an important criterion to be taken into account, 64% consider a short term life threatening condition as an important criterion and 60% a medium term life threatening condition.

In comparison, during the previous session, 67% and 56% voted in favour respectively for euthanasia and assisted suicide for minors, and 45% were in favour of assisted suicide for people “suffering from incurable diseases causing persistent suffering or pain without necessarily any life threatening condition”.

One result is however worrying, since 63% of citizens considered that the discernment via a person of confidence is an important criterion to be considered. Could the person of confidence therefore decide on euthanasia on behalf of the patient?

Finally, 55% of citizens rejected the consideration of psychological and existential suffering for access to active assistance in dying.

On these questions, the final votes should take place during the next session between the 17^th and 19^th March. A debate is also programmed on the end of life in 10 years time.

Finally, the Citizens’ Convention will submit the conclusions to its work on 2^nd April instead of 19^th March, the date initially intended. The current social unrest has led the Convention to defer its last two sessions.

Turmoil following the 6^th session of the end of life Convention

Moreover, as revealed by an article in Le Figaro, certain members of the Citizens’ Convention were uncomfortable with the communication issued following the votes from session 6 on active assistance in dying.

Some forty of the citizens asked the management committee to relay a press release complaining about the media treatment focused on the results of the preliminary votes.

As explained by a signatory citizen, Soline, during the press conference which followed the session, “we spent a very enriching week-end, full of debates and of content, and only the figures were reported.” These citizens regretted that all the work performed by a large group of the Convention on “transverse proposals” and in particular on the development of palliative care, was not relayed. “We felt cheated by the lack of media coverage of our proposals”, said Soline.

There only remains to hope that the media, as well as the government, will afford these proposals the attention which they deserve on submission of the final report.