Demographic data
A total of 47 participants attended the online democratic deliberation held on June 4, 2022. There were 20 participants from the province of Quebec and 27 from the province of Ontario. In Quebec, the deliberation was conducted in French while in Ontario it was conducted in English. Both sessions were conducted simultaneously. Demographic data suggest a diverse sample [Table 1]. The distribution was proportional in terms of gender with males accounting for (49%) of the sample and females (51%). Participants age was also very diverse with (11%) aged between 18 to 24 years of age, (8.5%) between 25 to 34 years of age, (17%) between 35 to 44 years of age, (23%) between 45 to 54 years of age, (15%) between 55 to 64 years of age, (17%) between 65 to 74 years of age, and finally (8.5%) over 75 years of age. In terms of place of origin, representatives from 12 sub-regions of Quebec participated in the deliberation, with the largest representation coming from La Capitale Nationale (8.5%). In Ontario, all sub-regions were represented, with the largest representation from Greater Toronto (25.5%). Regarding education levels, the highest percentages of participation were from the College (30%) and University undergraduate (28%) groups. Most participants reported having a job (51%) and (47%) reported an annual income between 30,000 and 69,000 Canadian dollars. Ethnocultural groups included Asian, South Asian, Latin American, Afro American, Arab, and visible minority participants (30%). The largest percentage were non-minority participants (70%). Each group included one First Nations participant.
Table 1. Demographic variables of the deliberators (N=47)
Variables
|
Quebec
20 (43%)
|
Ontario
27 (57%)
|
Gender
Male
Female
Other
|
9 (45)
11 (55)
0 (0)
|
14 (52)
13 (48)
0 (0)
|
Age
18-24
25-34
35-44
45-54
55-64
65-74
≥ 75
|
3 (15)
1 (5)
3 (15)
6 (30)
2 (10)
4 (20)
1 (5)
|
2 (7.4)
3 (11)
5 (18.5)
5 (18.5)
5 (18.5)
4 (14.8)
3 (11)
|
Region
|
Bas-Saint-Laurent 1 (5)
Saguenay–Lac-Saint-Jean 1 (5)
Capitale-Nationale 4 (20)
Estrie 1 (5)
Montréal 3 (15)
Outaouais 1 (5)
Abitibi-Témiscamingue 1 (5)
Côte-Nord 1 (5)
Gaspésie–Îles-de-la-Madeleine 1 (5)
Lanaudière 2 (5)
Montérégie 3 (5)
Centre-du-Québec 1 (5)
|
Centre 5 (18.5)
East 4 (14.8)
Greater Toronto 12 (44.4)
Northeast 1 (3.7)
Northwest 1 (3.7)
Southwest 4 (14.8)
|
First Nations
Yes
No
|
1 (5)
0
|
1 (3.7)
0
|
Functional limitations
Yes
No
|
0
20 (100)
|
6 (22.2)
21 (77.7)
|
Ethnocultural groups
Asian (e.g. Chinese, Korean, Japanese, Filipino)
South Asian (e.g., Indian, Pakistani)
Latin American
Afro American
Arab
Visible minority
Multiple visible minorities
Not a visible minority
I prefer not to answer
|
0
0
2 (10)
0
0
1 (5)
0
16 (80)
1 (5)
|
3 (11)
2 (7.4)
0
2 (7.4)
1 (3.7)
1 (3.7)
1 (3.7)
17 (62.9)
0
|
Schooling
Primary (7 years or less)
Secondary (DES in general or vocational training)
College (DEC pre-university training, technical)
University 1 (Bachelor's degree)
University 2 (Master's degree)
University 3 (Doctorate)
I prefer not to answer
|
0
4 (20)
8 (40)
4 (20)
3 (15)
0
1 (5)
|
0
7 (25.9)
6 (22.2)
9 (33.3)
4 (14.8)
1 (3.7)
0
|
Occupation
I am studying or in training
I am working
I am taking care of my children or a relative
I am retired
I am unemployed
I am self-employed
|
0
13 (65)
1 (5)
3 (15)
2 (10)
1 (5)
|
1 (3.7)
11 (40.7)
0
9 (33.3)
3 (11)
3 (11)
|
Income
Less than 30,000$
30 000$ à 49 999$
50 000$ à 69 999$
70 000$ à 99 999$
100 000$ and more
|
4 (20)
6 (30)
3 (15)
5 (25)
1 (5)
|
4 (14.8)
5 (18.5)
8 (29.6)
5 (18.5)
5 (18.5)
|
Source: INM data
Online Democratic deliberation
The citizens of both Quebec and Ontario were questioned about their opinions regarding each tiebreaker criteria. They were asked to present their arguments for and against each of the tiebreakers. They were also asked to identify which tiebreakers were the most and least acceptable to them. Thus, our four emerging themes were centered on the acceptance or non-acceptance of the tiebreakers. Our main themes were: 1. Priority to the youngest - Life cycle a preferred tiebreaker; 2. Randomization - A tiebreaker of last resort; 3. The multiplier effect of the most exposed healthcare workers - A tiebreaker of moderate acceptability; and 4. Social value of individual – A less acceptable tiebreaker. A diagram -Coding tree NVivo 2022- was developed to show the main emerging themes and values underlying the tiebreakers according to our interpretation and analysis [Figure 1]. This coding tree shows that, in general, the participating public considered it important to give priority to young patients through intergenerational equity, with the life cycle being a favorite tiebreaker. They also considered it important to manage scarce healthcare resources judiciously, especially in an extreme context, to streamline intensive care, and allow more patients to benefit. We observed, in general, a utilitarian perspective based on maximization for the common good. We also found other values that were considered important in prioritizing patients in case of a tie, such as the value of efficiency, equality, solidarity, and instrumental value.
The pattern found in the data coding regarding the acceptability and unacceptability of the tiebreakers by the public’s opinion is presented in a coding query [Figure 2]. This coding query allowed us to appreciate the convergences and divergences between the tiebreakers according to the public consulted. The greatest convergence was observed in two tiebreakers: favoring the life cycle and disfavoring the social value of the individual. In contrast, we found a divergence of opinions among participants with the tiebreakers of absolute age and reciprocity. Regarding the tiebreaker of favoring healthcare personnel, the most exposed group, we noted that the value of reciprocity for frontline healthcare workers was poorly supported, as opposed to its multiplier effect. The multiplier effect or instrumental value was moderately accepted. In the case of randomization, its acceptance was present, but not predominant. Few participants did not know what to answer or were unsure of their responses when considering the acceptability of some the tiebreakers presented. In addition to these results, a coding comparison diagram showed that most of the public consulted preferred life cycle as a tiebreaker for prioritization of adult patients to intensive care in an extreme pandemic setting. Details are provided in Additional file 4.
We illustrate below the main quotes according to the emerging themes (Free translation from French to English are indicated between quotation marks).
Theme 1. Priority to the youngest - Life cycle a preferred tiebreaker
Most participants voiced that it is important to give priority to people who still have stages to live through. Some of them stated that younger patients are more likely to do well in intensive care unlike elderly people, probably considering their ability to withstand medical interventions, their ability to recover from them, and, above all, that, in an extreme situation, healthcare resources should be well managed to save more lives. Others indicated the importance of preserving new generations, emphasizing their solidarity with them. Thus, some quotes in favor of the life cycle of Quebec and Ontario’s participants were:
“I am a woman, I am the oldest, when I hear the extreme and when I was told one day of intensive care,… and when I was operated it took me 2 years to recover because I did not move…I didn’t move and I was practically paralyzed but I say to myself that the life cycle makes me understand that at a given moment, even if the person was extraordinary or like me perfect, I wouldn’t get over it,…here we are in the extremes, it’s not so much that we like the young person or don’t like the young person, it’s precisely the life cycle; at some point we hope that there will be more time for him [the patient] to recover, to sail around the world on a boat with his three children." (Participant QC4)
“My preference is for the life cycle…it’s for sure that I’ll give more chance to a younger one than to an older one; I’d rather prioritize my offspring over myself...” (Participant QC3)
We observed that some participants did not overly differentiate between two tiebreakers: the life cycle and the absolute age criteria. Participants agreed to prioritize younger patients both indirectly (through life cycle) and directly (through absolute age). This was observed especially in the Ontario group. Their quotes were:
I am part of the older generation… Say my grandchild or child were up against each other. We’re in the same boat. There would be no question in my own mind, personally and ethically, that they go first before me. No question in my mind. There’s a lot of history of this. If you go back in human history with all these wars and battles, women and children were respected…. I feel very strongly ethically that life cycle and age have to be at the top of this if it comes to the horrible decision that has to be made (who gets treatment and who doesn’t in the ICU). When I look back on that, it sort of re-enforces my feelings on this. (Participant ON21)
Absolute age and life cycle should be at the top… (Participant ON19)
However, we also noted that some participants did realize the difference between these two tiebreakers. One of them remarked that during a life cycle, each stage is different, because each one has its own opportunities. Other participants argued that by prioritizing according to the life cycle, younger people would have the opportunity to go through other stages of their own life cycle and that older people have already had this opportunity.
I would score life cycle just a little bit higher than absolute age because there are generally things that we do at different stages of our lives. They are similar in age but nobody is exactly the same. (Participant ON17)
It’s similar to age but we’re looking at it in bigger chunks and how far they are within life. So, the idea of allowing younger people or people in their earlier stages to experience life. (Participant ON1)
However, there was also one participant who expressed their opposition to the life cycle considering it subjective, and another participant who argued against both the life cycle and the absolute age criteria, considering both tiebreakers as unfair.
I think that life cycle is a value judgment as opposed to something that is an objective criterion. (Participant ON10)
I disagree with using life cycle for the same reason as age. Because it is not a fair decision. (Participant ON7)
In relation to the absolute age tiebreaker, for most of the Quebec participants, this was one of the criteria that was considered not very acceptable, since only one participant expressed their acceptance of it. While in Ontario there were more proponents of the absolute age tiebreaker. One of them remarked that taking absolute age into account is important because younger patients would take less time to heal if hospitalized in intensive care, as opposed to older patients:
“It's hard, but to 2 cases that are completely equal... you have to choose I think... I think the age of the young person may take precedence”. (Participant QC14)
…I think age should be at the top. The biggest reason would be that the older you are, the longer it takes. And the odds are basically against you to begin with. It may not seem fair to you being in the hospital, but those are just facts. You’re older and it definitely takes you longer to heal. (Participant ON1)
Arguments against the absolute age tiebreaker were also mainly expressed by most participants from Quebec, while in Ontario only a few were against it. The participants who were against absolute age as a tiebreaker argued that it was not an objective criterion, especially if it was considered as the only criterion. Faced with two patients with little difference in age and with the same life prognosis, participants believed that it would be very difficult to make such a tiebreaking decision and that the decision could be biased. Some quotes were:
“...For me, age is contrary to my values; it's subjective…” (Participant QC15)
“…but a person who is, for example, 39 years old compared to 40 years old as we were talking about earlier, there is really a very thin line between the 2, there is not really a big difference there, it's really because of that that the absolute age I had a little problem ...” (Participant QC16)
Theme 2. Randomization - A tiebreaker of last resort
Participants from both Quebec and Ontario voiced their acceptability for randomization as a tiebreaker to be used as a last resort or after considering other tiebreakers. Some participants were against using randomization as a tiebreaker giving the idea that there were other criteria more ethically justifiable than this one.
"Yes, but with reservations insofar as I understand that we are in a situation where we have exhausted all means; we have untied the knots, I understand, but I still need to have an ethical element for a criterion other than chance alone..." (Participant QC1)
…Lottery is the very last, the one you don’t want to use unless you don’t have a choice to consider it. (Participant ON23)
We also observed that some participants experienced a change of perspective regarding the randomization tiebreaker. They indicated that, at the beginning of the process, it was inconceivable to them to consider a lottery to allocate the only available critical care bed among patients with similar prognosis, but that their perspectives had changed.
"I was completely against it last week, but as I thought about it…in my opinion, I am divided, but I think that the lottery would be the fairest because there is no longer a social factor, everyone has the same chance." (Participant QC13)
"I was also quite against it, but finally it has really changed. I find that when you look at all the criteria, it is really the one that does not discriminate. Even if I think it's a bit weird to let chance decide who will live and who will die in certain situations, I still think it's the fairest..." (Participant QC11)
On the other hand, some participants from Quebec and Ontario voiced their non-acceptance for this tiebreaker. They argued that considering the lottery as a tiebreaker was an insensitive and risky way to choose between patients because human lives were at stake, and that, when having brilliant minds to reflect on these decisions, the least expected criterion was this one. Others mentioned that chaos would result from making these decisions through randomization alone.
"I find it totally unacceptable. I think that as we speak there are so many brilliant human beings, there is surely another way to decide because life is not a game; it is important, and I think that using the word lottery kills all the humanity that we can have in each of us.” (Participant QC16)
You’d have the chaos. You’d have the cold sense – the decision isn’t made by anybody. It’s like saying that you don’t want to make the decision so you’re just going to roll the dice. It’s too hurtful. I think practically it makes sense but ethically it would be too hurtful. (Participant ON12)
Theme 3. The multiplier effect of the most exposed healthcare workers – A tiebreaker of moderate acceptability
In relation to the most exposed healthcare workers tiebreaker, Quebec and Ontario participants expressed a moderate level of acceptability. There were some objections that were stated by participants, such as the uncertainty of returning to work. Although some indicated than even if it is not certain that they will return to work, they would support them anyway. They were more interested in the instrumental value of these workers in the hope that by prioritizing them, they would later be available to save more lives. However, when considering giving priority by reciprocity towards them (only out of gratitude), both Quebec and Ontario participants were not very supportive of the idea.
…We can’t guarantee that they can save lives later, but we’re already short on nurses and doctors. And so, I would rather take my chances on saving someone who could save lives and is already qualified to save lives even though they don’t end up saving lives than to just eliminate those people. We are already short so why do we want to be even shorter?... (Participant ON8)
“Just because they helped us doesn't mean they can get a higher grade, just because they came out and chose to do the job doesn't mean we'll thank them.” (Participant QC2)
In addition, one participant considered the multiplier effect unacceptable, indicating that it could be considered as a social value of the individual. Conversely, another participant pointed out a difference between the two values, especially during a pandemic, because of the care healthcare personnel provide.
“I find that healthcare personnel, their multiplier effect a little bit within the social value, like playing with words, I find this unacceptable.” (Participant QC18)
"Honestly, healthcare staff is something I would choose; that I distinguish from social value; I really distinguish the level of care that these people provide to the population." (Participant QC8)
Theme 4. Social value of individual - A less acceptable tiebreaker
The social value of an individual was the least accepted tiebreaker among participants from both Quebec and Ontario. Participants considered that the societal value of patients could lead to discrimination due to its inherent subjectivity. We illustrated some of their arguments in the following quotes:
"We had seen earlier that social value was the one we were least comfortable with, it's the criterion we can eliminate, it wouldn't be a choice." (Participant QC3)
…the lowest score possible. I’ll push it even further. Not only is it too subjective but it opens the gate to discrimination… (Participant ON8)
Some participants considered taking pregnant women into account under the social value of the individual as there would be two lives to save and because it would also include the category of caregivers (those who take care of children or vulnerable people).
That would have to go under social value. Because pregnancy can be a very wide age group. So, you can’t really do it that way. For social value, you really need to consider the fact that there are 2 lives rather than 1. And one of those lives hasn’t even begun yet. So, they have everything to experience. And you also have a caregiver value in there… (Participant ON26)
I think yes, caregivers should be up there at a high number because they have other people depending on them. And if you’re not there, who will take care of them? (Participant ON13)