This mini-public (Dibattito pubblico sul testamento biologico) was supported by Tuscany Region, Turin and Florence Municipality. It aims were to debate and vote on the living will in its various aspects.
Problems and Purpose
As part of a larger cultural participatory event, a deliberation on the 'living will' was held on 25 April 2009. The topic is highly divisive in Italy, where there is no clear legislation on the issue of living wills. The aim of the organizers was to facilitate the generation of an informed opinion on the topic by a heterogeneous group of Italians. This is a conflictual argument in Italy, in which individual religious beliefs play an important role. The organizers paid attention on this point; thus choice of participants to the event and of the table participants attempted to ensure variety of opinions. The event took place simultaneously in Turin and in Florence (the first two capitals of Italy; Rome was invited but did not accept); the two events were also connected via the internet.
Background History and Context
In 2009, the city of Turin with the association Italia 150 promoted the Biennale della democrazia. Inside this cultural event, that lasted almost a week, there were open lessons, seminars, theatricals performances, music, etc. In this context, a deliberative process was carried out on 25 April 2009.
Organizing, Supporting, and Funding Entities
This public debate was supported by Tuscany Region, Turin and Florence Municipality.
Participant Recruitment and Selection
Participants in the deliberative process included both ordinary people and experts. In the Turin-Florence deliberative process a large team of around 60 experts was involved. The experts were selected in order to have as many different views as possible. Sixteen of the experts — lawyers, medical doctors, psychologists, etc. — assisted with event management, providing contextual expertise, and in the "theme team" that analyzed comments generated by participants. Each table of participants was assigned a facilitator.
Turin recruited 200 randomly selected participants and Florence had 150. As far as gender is concerned, the composition of the participants was 60% female and 40% male. The religious representation was: 51% Catholic; 6% other Christian; 4% others; 32% no religion 32%; and 6% declined to answer.
Methods Tools Used
In respect to the theoretical method used in this process, the town meeting practice was born in the American colonies in the 17th century, where groups of citizens met in order to discuss aspects of their everyday life. It has since become one of the techniques of deliberative democracy. As an electronic town meeting, this mini-public used information and communication technologies. Thus, the electronic town meeting mixes the advantages of a discussion in small groups with the advantages of information technologies in voting. This technique has three main phases. It starts with an information phase, then the dialogue, and finally the voting on the proposals emerging from the previous phase.
What Went On: Process, Interaction, and Participation
Before the discussion started, the organizers posed two outright questions to participants:
- Should the patient's will always prevail over that of medical doctors?
- Is it right to stop artificial feeding?
68% answered yes to both questions, only 12% no to both; 20% had diversified opinions in respect to the two questions. As a consequence, participants were divided into two sectors. On one hand, there were tables with people with different points of view — the mixed group — and on the other hand the tables with people with similar points of view: the homogeneous group.
After the division into two main sectors, the process started. It was divided in four phases. The first was a pre-phase, a sort of brain storming to elicit all the possible points of view.
The first section's theme was:
- How does the medical doctor have to deal with the living will of the patient?
The second section had the following theme:
- What kind of limits should be fixed in the living will?
The third section had several themes:
- How to draft the living will?
- What can happen to those who don't have, or can't make, a living will?
- What could be alternatives to the living will?
Each table discussed these themes, then each participant voted using a remote control on other questions that had been fixed by the theme team after the discussion. The process was driven by the facilitators. Each discussion started with the point of view of a medical doctor, in order to give some technical informations.
Influence, Outcomes, and Effects
During the deliberations, each table discussed the proposed topics; the outcomes were sent to the theme team which summarized them; and the organizers then chose questions which were voted on by participants.
On the question of how medical doctors should deal with the living will of the patients, as expected, there have been many points of view. A very animated discussion took place inside both the mixed and homogeneous groups.
On the question: If the doctor disagrees with the will of the patient (as expressed before the introduction of the living will), what should the law establish?
- 4% Let the doctor choose, the living will is just a personal opinion
- 44% The doctor must always respect the will of the patient
- 31% Respect the will of the patient only when he has been previously informed about all the aspects of his choice
- 8% Respect the will of the patient, but don't when his choice is against his own life
- 5% Let a trustee choose, the relationship can't be between doctor and paper
- 1% Let the family choose, the relationship can't be between doctor and paper
- 3% An ethics committee should choose
- 1% I don't know
- 2% No answer
On the question: What shall we do in order to regulate this problem?
- 29% Create a law which establish the living will addressing all relevant aspects
- 45% Create a general law on the living will, in order to leave the choice to doctors and patients
- 1% No law, leave the choice to judges
- 5% I don't know
- 9% No answer
On the question: What shall we do in order to reduce the appointment to judges?
- 50% Create a law on the living will
- 32% Increase the quality of the relation between hospital staff, patient, and family
- 3% Reduce the risks connected with the medical profession
- 8% None of those
- 4% I don't know
- 3% No answer
The subject of the second section was: Which kind of limits should there be to the living will? The homogeneous group proposed increasing the information level both for medical staff and patients, fixing a limit of time for the validity of the living will, establishing an age limit for drafting a living will, and specifying the difference between unconsciousness and semi-conscious. The mixed group made similar proposals, underlining the importance of adequate information in order to make the right choice.
The third section had several questions. How should the living will be built? What can happen to someone who doesn't have, or can't make a living will? What can be an alternative to the living will? To the first question, the mixed and homogeneous groups answered in a quite similar way. Both stressed the importance of writing it in the clearest way possible, with the support of a lawyer and a doctor; they proposed creating a pre-fixed model available online. On the second question, substantial differences emerged within both groups. Some held the opinion that the doctor should always make the choice, others said that the decision should be made by a judge, or by the family or a trustee, and so on. The third question instead saw substantial division between the two groups. The heterogeneous group stressed the importance of the relation between doctor and patient, whereas the mixed group underlined the need of increasing other types of medical care.
Before and after the deliberative process, the same question was posed to the participants, with only one simple question: If the living will had a legal value, would you subscribe it?
Answer before:
- 74% Yes
- 11% No
- 12% I don't know
- 3% No answer
Answer after the process:
- 74% Yes
- 11% No
- 11% I don't know
- 2% No answer
- error in voting 1%
Analysis and Lessons Learned
One of the main arguments of deliberative democratic theory is that, after an informed discussion, people seem to change their opinions and preferences. If we judge this experience against this assumption, the process would seem to have been a failure. However, it should be considered that the participants were self-selected and came to the event already holding strong personal opinions. The high level of satisfaction of the participant represents a positive aspect.
However, some basic information of the event is lacking in the official report, such as the percentages of response to the questions of the second and third sections, and the costs of the process. To promote these kinds of processes, reports should be written in the most accurate way as possible, in order to prove the efficiency of those tools.