Six interrelated themes emerged from our analysis of the data: ethical and empirical starting points; criteria for setting priorities; pre-crisis planning; in-crisis decision-making; the need for public deliberation and input; and participants' deliberative struggle with the ethical issues.
Ethical & empirical starting points
Participants across all three town halls expressed what we are calling 'starting points' that seemed to function as guiding assumptions or 'givens' in their ensuing discussions. We use this term to capture a number of ideas or beliefs that participants invoked at different junctures, including assumptions about underlying moral values, such as equity, and ideas about 'the way things are'. Many participants began by describing the different reasons for which they agreed to participate in the town halls, often revealing personal stories related to public health emergencies caused by infectious diseases.
Well, I think I'm interested in the staff that are working in the hospitals and I think that came about from the fact that I was working as a nurse during the polio epidemic in the early 50s. (2, AM, p. 4)
As a child I had a mild case of polio during an epidemic. (2, AM, p. 5)
There was strong agreement among some town hall participants that all persons have a right to appropriate care from a health care professional, and that this right to care does not disappear during an emergency like pandemic influenza.
I think yeah, that everyone has the right to care. (2, AM, p.15)
Miss A is human and Mr. M is human and they all deserve the same level of respect and care. (3, AM, p.18)
I think the healthcare worker has to be taken care of, but I also think Mr. M does as well. They're both human. (3, AM, p.18)
However, while some participants also recognized that a right to care on the part of patients entails an obligation to treat on the part of health care professionals, others maintained that discharging the obligation to treat might have to be qualified in the context of an acute emergency that was overtaxing the healthcare system.
Well, yeah, we owe them something, but can we not provide some sort of care? Maybe we can't provide exactly what they need, but we can provide them comforts and something else, can't we? (3, AM, p.27)
Because even if we say to Mr. M, look you don't get the critical care bed... the responsibility is to provide as best a healthcare system as possible. Though [it] may not be ideal, but it still persists. (3, PM, p.15)
Another staring point shared by some participants was a reluctance to accept scarcity as a 'given'. Participants would sometimes propose a number of alternative solutions to facilitate access to care for anybody who needed care. Some participants questioned whether part of the solution to priority setting was merely redistributing medical resources creatively.
Strikes me that we only need to rethink how we use our resources and use them in more creative ways. (2, AM, p.15)
There are still other things to be done, other ways to allocate resources. (2, AM, p.24)
However, some participants suggested that the healthcare systems in their provinces were already in crisis and that a pandemic influenza would only serve to exacerbate this situation, i.e. that the healthcare system is 'broken' prior to an emergency.
There's never enough beds available in the hospitals for care. It's pretty much known. That's my gut reaction is that I get angry with the political cuts. (3, AM, p.4)
What happens to me? Like I don't even have a doctor to go to, so we don't even have doctors to go to right now, let alone if a pandemic hits this province, I think we are, yeah, screwed basically. (3, AM, p.10)
I have no faith in our system right now at all that we could handle a pandemic situation. (3, AM, p.10)
Some participants seemed to believe that certain members of society would receive preferential treatment and an unfair portion of resources during a pandemic. For example, some participants felt that in a time of crisis, healthcare workers would inevitably give priority to each other over non-worker patients and care for themselves or their own patients first.
What I'm concerned with is how things really work in the real world, and as I understand it, the good ol' boys network, they got their beds.... If you have a GP [family doctor] who is well entrenched in a [healthcare] network, you get better care. It's really common knowledge, so I want that on the table. Now, what that indicates is a lack of equity, okay. (2, AM, p.18)
You know healthcare workers [look] after healthcare workers. (3, PM, p.6)
Because she's [the nurse] got friends there, that people are going to slip her into the bed. (2, PM, p.12)
Some participants took certain values as 'givens', such that these values would not only constitute criteria to guide allocation (see the following subsection on Criteria), but also underpin thinking about priority setting as a whole. For example, some participants felt that maximizing the use of healthcare resources was the moral starting point upon which further priority setting decisions should be made, despite some of the negative repercussions that could follow this principle.
People are going to die and we have to try to save [the most people], do the best good for the most people. (1, AM, p.13)
So that when you're viewed as cold, heartless by the family, by other people, you can back up a step and say hang on a second, it may sound like that but we've gone through and realized that we're doing the most for the most people and we've had to use a very terrible set of criteria. (1, AM, p.32)
Others felt that those members of society in a position of power would necessarily get preferential treatment by virtue of their social positions.
I think it is not how much money you have, it's who you know. (3, PM, p.6)
These starting points shaped what values should guide priority setting criteria.
Criteria for setting priorities
Participants from across the three town halls all put forth criteria, or guiding principles, that they felt needed to be considered and balanced when making priority setting decisions during a pandemic influenza. We have characterized these as substantive and procedural criteria. By 'substantive criteria', we mean general principles that participants felt ought to be considered when making priority setting decisions, which were often derived from their underlying moral assumptions. For example, some town hall participants tended to value utility, or "do the best good for the most people" (1, AM, p.13), above other principles. Some participants felt that while maximizing the use of resources was important, other values need to be considered, including equitable treatment for all persons, "human rights" (3, AM, p.6), and the "dignity" (3, AM, p.9) of all persons. Other substantive criteria included need (i.e. treat those who are in the greatest need of medical attention) and survivability (i.e. treat those who are most likely to survive medical treatment). By 'procedural criteria' we understand principles that would help decision-makers make decisions in real-time, e.g., first-come-first-serve (i.e. treating people based on the order in which they arrive at the hospital).
There was considerable discussion about whether resources should be allocated on the basis of societal contributions, i.e. "not so much [social] status, but value [to] society, immediate value [to] society" (1, AM, p.17). For example, participants debated whether politicians deserved special treatment due to their roles in society.
You don't need a mayor - like you need a mayor for [the] long term, but day-to-day, if the mayor died, nobody would care for two years. (1, AM, p.16)
Another example is whether priority should be given to parents because of their caregiver role.
No, it makes a difference to me - there's three, possibly four people who are relying on that person. Not only is [he] the 'one of the bread winners', because we realize both parents have to work, but also as a family unit and how that would impact, I think, on the ages of the children. (1, AM, p.24)
On the basis of a person's value to society, most participants felt that the nurse, Ms. A, deserved to be prioritized over the non-healthcare worker patient, Mr. M. The justification for this prioritization differed among participants. Some participants felt that it was in society's best interest to give healthcare workers priority access to health services in order to ensure a strong and sustainable health infrastructure throughout a pandemic. A similar view held that not giving priority to healthcare workers might undermine the effectiveness of the overall health workforce:
If this nursing staff doesn't receive priority care over Mr. M. it will demoralize the rest of the nursing staff. We're out of here, we're gone, everybody can die, because we're not putting our lives in danger. (2, AM, p.20)
If the healthcare worker is not looked after, what's going to happen to the other healthcare workers when they see this? If they're not going to look after her, they're not going to look after me. I'll put on my coat and hat and get out of here, leave the hospital, or finish my shift and book off sick the next four days or three days, or whatever. (3, AM, p.17-18)
Other participants felt that society has a reciprocal duty to healthcare workers because of the risks they take to care for others.
[A nurse] has endangered their life in giving a public service and on that basis, [she] becomes a priority. (2, AM, p.21)
She accepted that she had an obligation to society and I think as a society we need to accept that we have a duty to her as well. (2, PM, p.4)
It should be noted, however, that not all participants gave priority to healthcare workers over members of the general public.
Is it really too much to ask that everyone be treated as equals the whole way through?.... How do you really place a value on somebody? Shouldn't everybody be on the same level? (3, PM, p.11)
Participants, therefore, discussed and weighed the pros and cons of different procedural and substantive criteria by which to set priorities during a pandemic influenza. Of note, special attention was given to whether someone's social status or employment in the healthcare sector granted a person priority access to scarce resources.
Across all three town halls, participants felt that governments, health agencies, and hospitals needed to have plans in place to guide decision-making prior to the occurrence of pandemic influenza.
You need to know what your priorities and policies are before you walk into this [crisis situation]. (2, AM, p.15)
I really truly think that in times of a pandemic, we'll have to come up with a plan. (3, PM, p.7)
There must be guidelines at the ER. (3, PM, p.6)
Part of the justification for requiring planning ahead of a crisis was to avoid overburdening decision-makers with the brunt of ethical responsibility associated to making difficult, often life-and-death, decisions. Participants commonly described having to make priority setting decisions as difficult, no-win situations, and as psychologically burdensome.
It sucks, but people are going to die.... [My] personal feeling on it is 'tough luck'. (1, AM, p.13)
We were talking about just how difficult it is to ask those [priority setting] questions. (3, AM, p.2)
Who makes the decision to where Mr. M is placed? That would be a tough job. (3, AM, p.9)
I can take charge of situations if I need to, there's no doubt about that and I know most people can, but especially if they know what the rules are, here we go, we've got a plan and everybody's got that same plan, then maybe we can implement it when we need to. (3, AM, p.10)
Another reason put forth for planning was to avoid conflict during a crisis regarding who would be making decisions and what values would guide priority setting.
We have to have a plan and if we have a plan and some guidelines, then hopefully they will see us through in the most ethical way possible. (3, PM, p.11)
To me this is what this is all about, is planning. It's about looking ahead, it's about having something to [help you decide], so that you don't have to be forced into those situations where you're subjective and emotional and all those kind of things, so the priorities have to be made in advance, while everybody is thinking clearly. (2, PM, p.28)
You were saying the poor decision maker and you're right, to make those decisions, I would not want to. Hopefully it's this sort of thinking beforehand that would facilitate and should at least make the responsibilities shared. (3, PM, p.5)
Participants also felt that having plans before the onset of a pandemic influenza might help ensure a fair and transparent decision making process.
I'm afraid that unless the priorities that are established in the planning stages, like in advance of the pandemic, unless they're really transparent, that a pecking order will result. (2, PM, p.12)
I think they [decisions] have to be made in advance, they have to be made now, they need to be pragmatic, they need to be transparent. (2, PM, p.27)
[The public] should know going into [the] hospital who takes priority. (3, PM, p.15)
At the same time, some participants noted that it is difficult to predict what will occur during a public health crisis, thereby making it difficult to plan for these situations. Others believed that plans would likely be ignored during a crisis because of the inherent stress of the situation.
I don't know if there's anything you can pre-plan, but that's what I suspect, because often in crisis situations, people will think - their heads just start to think, right, and you come up with solutions. (3, AM, p.5)
Even if there's a plan, I don't have the faith to believe that yes, we have a plan and this is what we're going to do. (3, AM, p.10)
Faced with adversity and in that situation, plans seem to go out the window. (3, AM, p.11)
Overall, participants generally believed that planning for a pandemic influenza was prudent and might make in-crisis decision making easier for those who ultimately will have to make difficult decisions.
Despite the support for having guidelines in advance of a pandemic influenza, participants acknowledged that difficult decisions would need to be made in the moment during a crisis.
So decisions have to be made and people have to make them in a time of emergency and the powers have to be given to those decision makers to make those decisions. (3, PM, p.23)
It seems to me that things probably get pretty hairy, pretty fast and decisions have to be made quite quickly and there's not really going to be any time to defer on a case. (2, PM, p.26)
Across the three town halls, participants often expressed that decisions should be made by a committee in order to avoid having any one solitary individual shoulder the entire burden of making potentially life-and-death decisions during a pandemic influenza outbreak.
More of a committee type and then you get a consensus or you get a quorum or something and you act upon it in that way. (3, PM, p.13)
In an ideal world, yeah, you'd have more than one person making that decision. (3, PM, p.19)
Most participants also believed that a variety of perspectives and persons should be involved in the decision-making process, not merely physicians. Although there was no agreement as to the composition of these decision-making committees, participants felt that they should include physicians, nurses, other healthcare workers, lawyers, patient advocates, and ethicists.
I would say that in the hospital, the healthcare workers, doctors, nurses, emergency responders, everybody, like whoever is involved in making decisions, the people with the most expertise have to be the people who make a decision in a crisis situation. (3, PM, p.19)
I think there should be nursing included because they spend [the most] time with the patients. (2, PM, p.26)
But we don't want just necessarily healthcare, you want the opinions of an ethical kind of, you know, a person who has some kind of staff training. Just a bit more variety than just a doctor or a nurse. (2, PM, p.26)
I'm a little bit confused as to who should actually make the decisions. (2, PM, p. 27)
However, a minority of participants also stated that physicians should have the final say in allocation decisions, especially if consensus was not possible or forthcoming.
It has to be his decision, the doctor in charge, I would think. If they can consult with the family a little bit, if there's time, but otherwise I'd leave it to the doctor. (3, PM, p.19)
Leave it up to the healthcare workers, you know, the doctors. (3, PM, p.21)
The person in charge of the ER would have to make the decision of Mr. M getting a room. (3, PM, p.15)
There appeared to be a sense among some participants that the normative capabilities required to make difficult decisions do not rest with only one type of person or, indeed, solely with professionals or experts.
I'm sorry, but your best doctor and your best lawyer do not know anything more about ethics than my mom, and that's the way it is. (2, PM, p.30)
Some participants also raised the possibility of patients or family members being involved with the decision-making regarding who would get scarce resources (e.g. "What about the family members or family?" - SJ, PM, p.16) although it was readily acknowledged that this would be more of an advocacy role rather than any actual decision-making power. One participant also contemplated having an appeals mechanism for patients and their families regarding priority setting decisions.
I thought guidelines would be good and yes, they should be followed as long as the patient or whomever would have the ability to appeal if they didn't like the outcome, but then I'm thinking in my head again, there's no time. How do you appeal? (3, PM, p.20)
Despite the need for pre-crisis planning, most participants felt that difficult priority setting decisions would need to be made by committees due to the contextual factors that arise during specific cases.
Need for public deliberation and input
Participants generally felt that pre-pandemic planning should be done in consultation with the public.
I think forums such as these are a really good way of getting some input in from the public. (2, PM, p.27)
Well, I think people are going to buy into it [i.e. decisions] more when it's more bottom-up than top-down. (2, PM, p.33)
[Guidelines] have to be created and the public has to be aware of them.... And have input. (3, PM, p.16)
In creating the guidelines, we all should be involved. (3, PM, p.17)
In particular, one participant noted that the public needs to be educated regarding the complexity of making priority setting decisions.
Education has to be part of the equation. It's very difficult. Education of, well, of us, right? It's really hard to wrap your head around the idea of the kinds of demands that are going to be made, the conditions that are going to exist. (2, PM, p.26)
However, some participants expressed doubt as to whether public consultation and input would actually be used to guide decision-making regarding priority setting or rather used as 'window-dressing'.
Democratically approved policies, criteria, out in front and to me, I mean I think that criteria [have] been established and policies made already and they have not been made by us and by us, I believe us means the [the public]. (2, PM, p.26)
This is interesting research but will this go anywhere, you know? But for [this province], I mean, wouldn't it be nice that whoever does come up with the guidelines to follow during the pandemic, they let us know and they give us some sort of avenue to give our feedback? (3, PM, p.16)
Participants across the town halls demonstrated what might be described as 'deliberative struggles' in their attempts to address the ethical quandaries posed by the priority setting scenario. Often, this was expressed as uncertainty about which ethical values to prioritize over others, i.e. how to balance different ethical values.
[That] it even needs to be considered that one human deserves more consideration than another [when allocating resources]. That boggles my mind. I just, I, I keep going over it in my head. I don't know. Pretty compelling. (3, AM, p.25)
Well after all of this discussion, my decision is somewhat clouded. (2, PM, p.22)
Some participants expressed distress about being asked to generate reasons or justifications for allocating scarce medical resources.
You have this sea of death around you, you can go home and say there's not enough whisky I can drink to erase this whole concept. (1, AM, p.33)
[In jest, given the ethical difficulty] Get me out of here! (2, PM, p.28)
Well, it's a very overwhelming situation. That's how I look at it and say very overwhelming. (3, AM, p.5)
One participant expressed her confusion reconsidered earlier pronouncements.
What surprised me is that I've gone through this exercise and how clear I may have been at one point and how completely confused I am now.... I question you know, the strength of my earlier decisions, you know. (2, PM, p.27-28)
Even for those participants who did not change their opinions as the day progressed, there was evidence of their appreciation for the difficulty of making priority setting decisions in light of scarce resources.
Well, it didn't change anything for me, but you have to consider this new piece of information, he has aging parents at home [but] that doesn't compel me to make a different decision... (3, PM, p.7)
Everybody is valuable in their own world, in their own way and it's going to be tricky, I know that, but right now, no, it [my decision] has not changed. (2, PM, p.9)
It doesn't change anything for me. I certainly feel more compassionate for Mr. M. He seems to be a caring individual, taking care of his parents so I value him more highly than just an individual that has had a bicycle accident... (2, PM, p.14)
In addition, the deliberative struggle was not just internal to individual participants, but also occurred between participants. Certain passages of the transcript suggest that participants were comfortable expressing differences of opinions with regard to the values that should guide priority setting.
Participant X: So she accepted that she had an obligation to society and I think as a society we need to accept that we have a duty to her as well, and I think that's the flip side of that coin, which we cannot avoid.
Participant Y: What percentage of her dollars went to build the hospital more than anybody else's?
Participant X: That's not the same thing.
Participant Y: The hospitals are built with care of everybody, not certain groups.
Participant X: No, they're not. But if we are in position where we are dependent upon people to make our lives possible and in terms of the healthcare worker, certainly serving sick people and serving sick people during a pandemic is incredibly risky. (2, PM, p. 4)
The willingness with which participants engaged in these deliberative struggles supports previous research on the ability of the general public to consider difficult and complex decisions about public policy