Participants identified four systemic ethical tensions: [1] biomedical versus social determinants of health agenda; [2] systems driven agendas versus situational care; [3] stigma and discrimination versus respect for persons; and [4] choice and autonomy versus surveillance and social control. In describing these four tensions, we lay out the full range of ethical issues expressed by participants as a group. The extent to which individual participants were aware of or described these tensions varied across participants. While some practitioners expressed a high degree of awareness of a range of issues, other practitioners were less aware of the broad range of ethical issues related to health equity work. So, the lens for viewing what constituted an ethical issue in health equity work varied across participants. As described elsewhere (55), PH practitioners with a critical public health ‘lens’ were more likely to recognize and experience ethical tensions. For each of these ethical tensions, we describe the underlying values conflict and identify the ethical concerns from the perspectives of PH practitioners. Although we present each of the four areas of ethical tensions separately, they are interrelated, and PH practitioners often must simultaneously navigate these issues to promote health equity.
Theme 1: The Health Equity Curse: Biomedical versus social determinants of health agenda
Participants identified a primary area of ethical tension as the dominance of a biomedical agenda that obscured the PH focus on health equity, with a subsequent lack of focus on the social determinants of health and systemic responses to reduce health inequities. They defined the biomedical agenda as the dominance of acute care priorities with a consequent emphasis on the treatment of disease, illness and injury for individuals rather than prevention and promotion. The following participant working on an integrated outreach team describes:
We’ve got the swing how to get people tested to make sure that the medication is working for them. So the medical system is actually quite good, quite slick. But in terms of the support for the other parts of their sort of hierarchy of needs, the housing, the food, you know all the stability that goes along with, or instability that goes along with poverty, I think we are still a long way from sorting that out. (S4-29)
Participants observed that within a biomedical system, there is a lack of understanding and valuing of PH work especially the work of prevention.
It’s really hard to say we prevented this mom from harming her baby, or we prevented this mom from having a postpartum psychosis and going into a hospital… it’s really hard to say we prevented something from happening. And so, you know, money and hospitals, people can see when they’re voting or putting money into the healthcare system, they can say, okay this x-ray machine does x-rays that prevents pneumothorax, which prevents death. Right? So that’s an easy thing for people to see, but in prevention and health promotion, it’s really hard to say, you know, having these clinics will prevent something from happening because the outcome should be nothing. And it’s really hard to prove nothing. (S4-04)
Furthermore, participants highlighted that even within PH what seemed to matter was communicable disease prevention and a focus on secondary prevention with less attention to primary prevention or health promotion such as described by the participant above.
And so the (name of organization) says that they’re into health equity, and they say they understand social determinants of health, but if you look at everything they do and all of their work plans and stuff, they’re all about some bugs and viruses, and emergency, you know, Ebola responses…..That seems to be the level of where we sit with health equity and they don’t know how to talk about- or they don’t publicly talk about what health has to say about the… the systemic stuff that we have, our policies that create health inequity. (S4-02)
While participants recognized that the health system was not solely responsible for addressing the determinants of health, the lack of value for the PH role and focusing upstream on the root causes of health inequities were often described by participants as unimportant to health systems. This same participant describes the daily ethical challenges of working in health care organizations that do not embrace health equity:
We’re ethically challenged every day because we work in health care in a place where people don’t have adequate services, don’t get treated well in the system, don’t have proper housing. So, sort of a different level for me. I was just going to say …. once you start seeing the world through a social determinants lens, it’s like you’re- you can never go back and it’s a bit of a curse. It’s not easy. (S4-02)
Other participants also shared that once you saw the world through a health equity lens it raised more ethical challenges than if you did not, because it means living with the moral discomfort of knowing what is needed but being unable to act. They acknowledged that sometimes it was easier for them and their colleagues not to hold a health equity lens because accepting the status quo reduces discomfort. This paradoxical “health equity curse” included knowing that clients, families, groups, communities and populations are experiencing deficits in resources for health but their needs do not fit into the dominant model of biomedical care.
This lack of access to resources for health was a fundamental ethical issue and experienced as morally distressing, as described by the following participant:
Because you know, you’re stuck….you can’t give people a better house…..You can’t get them a sink, you can’t give them the basic needs, right? So you are, you’re very torn and almost feel guilty at the end of the day when you go home and you think, like “God,” you know? You stand in question of what you have and what you need, and what people need in society. (S4-20)
Working within a healthcare system that fails to act on the determinants of health weighed heavily on the PH practitioners in our study. They felt that they had few, if any, resources available to address determinants of health or the structural causes that produced health inequities or the subsequent distress associated with being aware and unable to act.
Theme 2: Procedures, Checklists and Checkboxes: Systems driven agendas versus situational care
Participants highlighted how the pressure of meeting systems requirements drove PH work rather than the situational needs of clients. Participants pointed to systems requirements such as procedures, guidelines, checklists and checkboxes as the drivers of their work and ultimately actions/inactions taken to promote health equity. One participant described:
You know, public health is so indoctrinated with policies and procedures and guidelines and charting, and again, that often gets taken up with, you know, what’s being delivered from above into how we do our work, So again, it’s not really about the clients themselves and the work with them, but it’s about the criteria put out by [Health Authority]. (S4-12)
In particular, PH practitioners described how systems requirements, based on standardized assessments rather than structural or situational factors were prioritized when it came to determining eligibility for services and programs. One participant stated:
Certain mothers quote unquote “qualify” for a home visit due to some varying risk factors. And is that an equitable way of treating our population? Because it leaves out that aesthetic way of knowing about that person. You know? Saying “I just have this feeling that this mom needs a visit” or “just from her tone of voice, I think she’s not telling me she’s depressed but I sense something” so I go out and visit and sure enough, there’s several different things going on. (S4-18)
In addition to program eligibility criteria that allowed little room for clinical assessment of situations, participants described the ethical issues of working with checklists/checkboxes, procedures, and guidelines rather than focusing on the person and their context.
So what I mean by that is probably in this office if we were to do ideal nursing work or ideal support, family support work, we would be able to call all the moms and ask them what they wanted from us and be able to implement that whether it’s going out to see them in their homes, or taking them to, you know, the store to buy proper food, you know, helping them, whatever they wanted, whatever they felt that they needed at that time to meet where they were at. If we were able to do that without constraints of resources and um checklists and things like that,…..So I think for us, all our ethical dilemmas come from the facts that we work on the ground very differently than what the people who create our resource pool and our jobs, and our job description work from. (S4-04).
The examples above also highlight a move away from universal to targeted programs with a focus on standardized criteria for assessing risk. One participant describes the evolution of this shift.
You know there’s always a nurse available that if a parent had been discharged with a new baby, they would get a home visit to make sure that things are going well, you know, to do an assessment on their mood. So the universal program over the last number of years is getting more streamlined into more targeted populations, the higher risk group or the higher priorities is how they term it in public health. So that, the universal approach, is kind of shifting a bit, looking at budgets, you know, how to invest your money, right? But always I feel that with the thought of universal approach, a lot of people get kind of lost - because it’s not always obvious that there’s issues, right? ( S4-12)
Systems requirements related to program eligibility, procedures, checklists and checkboxes and shift from universal to targeted programs shift the focus away from promoting equity in that resources cannot be based on assessment of need. Some practitioners pointed to the mantra of patient centered care as a health system priority but with little attention to the social conditions that impact individual health reflecting a value of individualism/ neo-liberalism. Thus, there is a tension between systems driven agendas in which the focus is on meeting the demands/needs of the system and situationally driven care in which individuals and their needs are understood within a set of social circumstances.
Theme 3: Systemic stigma and discrimination versus respect for persons
Participants described stigma and discrimination as pervasive within health care systems. They described witnessing various forms of stigma related to mental illness, substance use, addiction, HIV, blaming and criminalizing of people experiencing health inequities.
I find there’s more judgement. You know…not having the same kind of emphasis or compassion, or understanding of the complexities of health inequities, you know, and the determinants of health, even though that is part of the lens in public health, there’s still sort of…there’s a certain attitude of like they choose just for themselves. (S4-12)
The quote above highlights a dominant understanding that it is the individual who is to blame (e.g. they choose this for themselves) rather than a recognition of systemic inequities. The participant below describes how this plays out specifically related to mental health and substance use.
Oh we won’t treat you if you’re using and if you’re mentally ill…maybe it’s because of your use, so therefore we won’t deal with you, I think that really reflects our society’s attitudes, about, probably our state- about how we feel about mental health and how we feel about addiction, right? So if you’re so… I don’t know, you know, ‘lazy’, or ‘unorganized’ or ‘undisciplined enough’ to be using something, we’re not- so this is an underlying theme with addiction: you know, you’re not -you’re just a drain on our system and so, you know, you’re wasting bed space here because you’re addicted to something…So we want you to get it together before you come back…So there’s that serious underlying theme that threads through how, I think, our society sees people who use drugs. And then, you know, so if they come in using and with mental health, that kind of gets layered into how they’re treated. (S4-02)
While participants recognized stigma of mental health and substance use as in the example above, they were less likely to name intersections of stigma with various other forms of discrimination related to ethnicity, sex and gender.
You know, there’s certain gaps for instance for the First Nations population who don’t live on reserve, they can access our services, right? But, you know, there’s just always, maybe not as comfortable to walk into our building that’s very clinical and very institutional feeling – it’s a very old building. You know, big counter, so I mean I think that can be a barrier for people feeling comfortable to access the services. (S4-12)
Although this PH practitioner did not directly name racism or link the ‘institutional feeling’ to a colonizing history, racial discrimination compounds other stigma related to mental health and substance use. Participants did at times identify sex and gender as areas of discrimination but did not necessarily recognize or identify the intersections of various forms of stigma and discrimination.
As a result of various forms of stigma and discrimination, participants described healthcare systems as producing mistrust and affecting health care experiences of populations they were working with.
And because they’ve probably been treated in the past, they’re not wanting to access service and they mistrust now….The majority of my clientele that I work with will not, and I’ve never seen this before, will not go to the hospital. And I kid you not, until it’s almost too late or too late. I’ve never seen that, because of how they’ve been treated. (S4-25)
Participants described how their clients’ concerns were often dismissed outright and the challenges related to system processes such as navigating through bureaucracy, filling out multiple forms and getting through gatekeepers was daunting, creating ethical concerns related to the personal capacity and energy of clients and practitioners to work to access a system that is highly stigmatizing and limited in what can be provided. For example, one participant described the work of carefully choosing terminology in documentation to favorably present a client so that they could get access to housing and described this as ‘fudging it” rather than seeing this as a way to reduce stigma knowing that housing was scarce commodity in the community.
Several participants discussed how the line between practitioner and client experiences is not so distinct. Some participants self-identified as having past problematic drug use, being gender non-conforming, having experience with mental health issues, or having family members or loved ones in need of mental health or substance use supports. One participant described how their identity as queer was not recognized as an asset in the workplace but rather something that they had to manage carefully in terms of who they shared this information with. Finally, because the work of PH practitioners brought them close to groups that are so often stigmatized, they were found themselves personally impacted by stigma, “I think the work that we do is also stigmatized. Like, our clients are stigmatized for their health and social status and we are stigmatized for working with them” (S4-20). Thus, having to navigate stigma and discrimination on multiple fronts for themselves and their clients. However, there was seemingly little appetite to address systemic stigma within organizations.
My agency ... they say they care about these issues [of equity], but if we start talking about them too much, they tell us to not talk openly about it. Yeah. Like a few of us will get quite fired up every so often about how they profile groups, and then, you know, say “These people are more at risk” and they stigmatize them sort of there, or don’t look at all the complexities that go into why that group, you know, is more vulnerable. (S4-02)
For these practitioners, discussion was stifled leaving sources of inequity unaddressed and continuing to operate in the very systems meant to provide care.
Theme 4: Trust and autonomy versus surveillance and social control
The context of relationships between practitioners and clients was one of mistrust due to systemic stigma and past negative experiences in healthcare. Consequently, participants indicated that building and preserving trust and autonomy were priorities that sometimes came into conflict with organizational or legislated demands that required measures of surveillance and at times social control.
Participants particularly noted concerns related to trust and autonomy around maintaining confidentiality and consent regarding communicable disease reporting to protect the public. Participants shared how navigating STI reporting requires a nuanced approach to keep clients engaged in care and meet population health mandates. It takes time to build trust, learn details and assess risks in a situation as well as decision making about how to reduce both individual and population risks. One practitioner described working with a client who was positive for HIV and she had not told her partner.
Only a few hours ago we were faced with this ethical issue where one of our clients who comes up from time to time, where we know that she has an ongoing relationship with someone who isn’t aware of her HIV status. And so that’s always a bit of an issue ... but they aren’t sexually active, so it hasn’t been a big concern to us that he doesn’t know. But he said that yesterday he was picking her up and then he was poked with a needle. And so suddenly I’m thinking he needs to know so he can access care, he should be offered post exposure prophylaxis and the window is so short for that. But we can’t inform him and break her confidentiality. I wonder if we can find her to talk to her and let her know, like “hey this is what he told us. Can we work with you at all to disclose?”. .. So I was sort of sitting here thinking “I can’t not do anything”. .. And I think really feeling the pressure of it because of it being this short time frame where we if we can get anything happening, we need to get it happening now. (S4-23)
This exemplified how practitioners work to preserve trust as well as being finely attuned to their clients and their clients’’ particular situations as they worked to navigate their obligations in the face of possible risk to the public. As our participants described, approaching disclosure in a client led way was emotionally intense and required persistent engagement, and ongoing assessment. Acting prematurely might cause the client to disengage and lose trust in the practitioner and then increasing risks for population health. Thus, knowing when it was appropriate to break confidentiality to disclose private information was a delicate relational dance in which the practitioner had to balance the relationship with client and the health of others as circumstances unfolded. Although a different form of surveillance, the practitioner below describes being requested to check up on a client.
And the times where I feel like my ethics have been compromised is where I’ve been asked to have quite a specific follow up. Like, you know, one example would be to call the doctor to make sure that the client attended for a baby checkup. Or something like that. For me, .., if that was an agreement I had with the client already personally, I would feel okay about that. But for me as maybe we’ve never even met, that feels like policing and that feels unethical to me. (S4-21)
So, policing rather than ensuring a client has the resources they need to care for their child such as adequate housing, income and social supports. Other participants described ethically challenging situations as knowing when to call the police or child protection, knowing that such calls would bring in systems of social control and work against the hard-fought earning of trust. Participants described being in the position of working to preserve trust and autonomy with their clients and attempting to manage surveillance and social control to promote health equity.