In total, 24 people participated in the workshop in stakeholder groupings including ‘family/friends of those at risk of overdose’, ‘emergency responders’, ‘people who take opioids’, ‘frontline/harm reduction or clinical and allied health practitioners’, and ‘program administration’. At points throughout the results, we delineate who is talking according to the following perspectives: persons who take opioids (PWTO), family/friends of PWTO, emergency medical services (EMS), law enforcement, providers (physicians, nurses, nurse practitioners and pharmacists), and harm reduction workers.
The results of an analysis of their dialogue and participation indicated three themes covering naloxone administration and specific needs of response, training materials, and kits; issues of access, and issues of awareness to include stigma and public perception and support for naloxone programs.
3.1 Are community members (professional and lay) prepared to respond?
Participants questioned whether community members (including police officers, service providers and lay people) are prepared to respond to opioid overdose in real-time situations. In particular, participants voiced concerns related to the following topics: recognizing the physical signs of an overdose, knowing how much naloxone is enough, first-aid response, legal barriers and overdose risk perceptions.
What does opioid overdose look like?
‘What overdose looks like’ had two aspects that participants emphasized – one had to do with recognizing the signs of overdose (and what to watch for) and the other had to do with stigma associated with the circumstances in which overdose occurs. Participants expressed concerns that lay people along with service professionals (police officers or security guards in particular) may experience difficulties recognizing an opioid overdose when they encounter it in a community setting. A harm reduction worker noted that ‘mixed’ or ‘atypical presentations can challenge responders’ preconceived notions of what overdose looks like. Similarly, discussions at the family/friends table, corroborated that opioid overdoses can be difficult to recognize:
Family/friend of PWTO: …some of the overdoses have an odd presentation as well, because now we're getting the fentanyl and carfentanil [mixed] in the crystal meth,...
Family and friends of PWTO worried that stigma and contextual factors may interfere with recognizing and responding to an overdose, potentially amplifying reluctance to respond. They portrayed overdose as disordered and used stigmatising terms to describe it, having the potential to be a “messy or dirty scene” with many distractions (e.g., the smell of alcohol, the presence of needles, and the sight of vomit), which could deter first-responders from acting, or acting in a timely way. They described this as manifested in reluctance to touch someone in overdose, if drug paraphernalia are present, for example:
Family/friend of PWTO: If there's education around what an overdose looks like, that's a good thing, but it still contributes to the stigma. Because, if somebody has vomit around them, nobody's going to touch them. If somebody has syringes on them, nobody's going to touch them.
From this perspective, the physical nature of what overdose looks like can be a deterrent to timely first-response.
How much naloxone is enough?
With respect to administering naloxone, participants raised questions as to how much naloxone is enough to counter the potent effects of synthetic opioids like carfentanil. A harm reduction worker recounted:
When you're talking about the new synthetic opioids, like, we're now carrying six vials with us. And, even with that, we had an incident a couple of weeks ago where the nurse I was with went through all six.
Moreover, the form in which naloxone is administered may influence one’s perception of dose response. In particular, a PWTO voiced skepticism over nasal naloxone, and if it was as effective as injection,
…when you overdose, your breathing [is] shallow, you know what I mean. So, if you can't take a breath in, is the spray going to do anything, right?
Ongoing work needs to be done to provide opportunities to address questions about naloxone use and how it works. Opposite to these concerns about not giving enough naloxone, participants also discussed the notion of withdrawal associated with administering too much naloxone. They worried that by giving too much naloxone all at once, a first responder might be abruptly putting the overdose victim into a state of withdrawal. For example:
Family/friend of PWTO: …once people are overdosed, when they come to after the naloxone, they're very agitated. They have pain, they're angry and they get instant withdrawal. So, learning how to deal with somebody after they come out of an overdose and what we can do …
Participant accounts related to this issue of withdrawal suggest that administering naloxone may be conceptualized as a balancing act. On the one hand, not being equipped with enough naloxone to resuscitate an individual was a fear recounted by participants. A harm reduction worker recounted their approach to this issue:
I think the other thing that we try and get across is, use one dose and see what happens. Don't panic and give all three doses because otherwise you end up putting somebody into withdrawal and they're not happy. So, it's almost like titrating. Give one dose, carry on with your resuscitation and then give another dose.
Resuscitation and feeling prepared
Aside from administering naloxone, participants spoke about a broader first-aid response. The notion of feeling prepared was important to lay participants, as PWTO and their family/friends wanted to empower themselves with the necessary first-aid knowledge and skills to effectively respond in an overdose situation. This involved learning how to take command of (or “quarterback”) the situation:
Family/friend of PWTO: So, if you're there and you're the quarterback, you can, kind of, like do the playback for that. 'Hi, I'm [name]… I have experience with this, I'm going to take control of the situation right now. Would you please go [call] 911 and call paramedics for us? …
Similar to having a fire safety plan in one’s home, family and friends spoke about a desire to implement opioid overdose safety plans as common practice within communities:
Family/friend: if you have a Fire plan for your house, why not have an overdose plan? You're in charge of calling. You've got to get the kit. You're staying with the person. Something like that?
To help guide lay responders to prepare for resuscitation, healthcare providers spoke about developing their own overdose response instructions to accompany the naloxone kits they were distributing:
Provider: This is something we made up for our kits'… So, you do, 'shake and shout'…if you don’t get a response, then you call 911. Then, you administer naloxone. Then, you check breathing. If they're not breathing, then you do chest compressions for two minutes, then administer a second dose.
Although healthcare providers spoke about trying to educate lay people, participants reflected upon some uncertainties they recognized in the context of overdose resuscitation. An EMS participant noted,
EMS participant: … we're just sort of questioning what is the best sort of chain of survival for this person? And, it's beyond just that, but is it call 911 first? Is [it] deliver Naloxone first? Is it start ventilations? If that's the case then we need to start properly training people…
There were broader resuscitation principles that applied to this first-aid event. In addition, prior to the moment when an individual enters into overdose, a family/friend of PWTO indicated that it was also critical to acknowledge a “using plan” as a preventive component of the broad domain of overdose education,
Family/friend: I was just talking to the Chief [Indigenous community]… and he told me, the people that died of the carfentanil recently… were from his reserve…And he said, "I don't know why they didn't have someone try it out first instead of all of them doing it." … he said they should have a plan before they're going to use if they don’t know who they're buying those drugs from, right? …
Rather than contextualize overdose education and naloxone distribution programs solely around the acute episode of overdose (i.e. when a person requires resuscitation), this quote suggests that public health initiatives could benefit from widening their scope and acknowledging the events leading up to an overdose. This preparatory mechanism to avoid overdose seemed especially valuable as participants highlighted barriers to calling 911 (as presented in the next section).
Barriers to calling 911
Participants indicated that calling 911 is an integral part of an overdose response within a community setting. Layperson accounts highlighted a lack of trust between police officers and some community members, as people might fear that police officers could press drug-related charges against them at an overdose scene, even for carrying naloxone. As PWTO recounted:
I almost got arrested because of my naloxone kit. None of them [police] knew what it was. None of them knew anything about it… we have people that, because of the stigma of law enforcement, they administer Narcan, don't tell anybody and leave.
Feeling a need to flee the scene after calling 911 and perceiving themselves to be at legal risk when providing a potentially life-saving intervention (despite the Good Samaritan Act) makes this aspect of designing overdose education interventions particularly difficult.
For lay participants who spoke about calling 911, they shared their own approaches regarding how to communicate an overdose situation to the call center,
Family/friend of PWTO: …do not say that they overdosed. Just say, 'my friend is not breathing.' Because, chances are, the ambulance may not call the cops unless they see, you know, like, a horrific scene, right? .”'
Upon hearing these accounts related to fear of police accompanying EMS to overdose scenes, a representative of law enforcement explained why police were needed at the scene,
Law enforcement: It has nothing to do with the criminal aspect. It's for provider safety, right. So, that to me is very powerful, you know, people that aren't saying it's an overdose just because they think there's gonna be a legal ramification and that's putting responders into an unsafe position.
Although members of law enforcement may see police presence as helpful in ensuring safety for first responders, other participants spoke about their presence as intimidating for PWTO. To combat fears concerning law enforcement, a healthcare provider spoke about adapting their educational approach to account for the broader legal context influencing how lay people respond, which they considered an additional burden for providers and harm reduction workers.
Provider:...if you call in and you're in an apartment with a lot of drug paraphernalia, you drag that patient out…the person out into the hallway, you lock your door and you do your first aid there until EMS arrives, and then you leave. ….sort of like a temporary measure until law enforcement really puts in the effort to build a trusting relationship with the community ..”
Participants in this study indicated that legal concerns and stigma need accounting for when thinking about how to implement overdose response training into communities, perhaps more so than in other situations where they might call emergency services.
Overdose risk perceptions
Although participants across tables generally implied that there was a “typical” individual at risk for overdose (i.e. people on high-dose opioid prescriptions or who inject drugs), participants emphasized that naloxone administration and overdose response should be viewed as a broader community health concern, one that could impact anybody using drugs or taking prescription opioids. For instance, there was talk amongst law enforcement participants about overdoses that affect opioid-naïve individuals, such as those who are using illicit recreational drugs tainted with synthetic opioids.
EMS/law enforcement: So, for an example, in British Columbia, everybody and their dog focuses on the Downtown Eastside, but in reality, these issues are anywhere there's a drug element, right? And, that started with cocaine. So, anywhere there was cocaine … that didn't get the attention [it] needed.
Moreover, a provider proclaimed that the general public should widen their scope when thinking about who needs naloxone,
…there's no one population. It's across the spectrum of gender. It's across the spectrum of income levels. It's across race, ethnicity. So, it's not just low-income individuals who are mostly suffering from overdose. But, you have, like, Bay Street professionals who have just as much risk for addiction.
Although providers felt able to identify patients at risk for overdose, they felt that convincing individual patients of this risk was a difficult endeavor,
Provider: I have a lot of patients who will have high-dose prescribing and benzodiazepine and, in my view, be at really high risk because of what we know from research. But, they don't feel like they're at risk because they've never overdosed before because their doctor is prescribing it. ...
I'm sure a lot of it relates to stigma that, 'I'm not that person who's going to overdose.'
Broadening the scope of who is actually at risk of overdose and recognizing the opioid crisis for the public health emergency that it is seems vital to designing an effective educational intervention that does not feed into stigmatizing views or attitudes surrounding those who overdose.
3.2 Moving naloxone out of the professional sphere
Within discussions, participants conveyed a desire to make naloxone a community-based resource; accessed by community members to use in a timely fashion to save a peer’s life. Participants expressed that naloxone should be readily accessible to a broad range of people. As one harm reduction worker explained,
It should be the people for the people. We shouldn't be delineating, you know, pharmacists are the one[s] that should be delivering this. It should be people for people and ..
Unlike other first aid interventions such as public access to automatic external defibrillators (AED), participants described that naloxone was not yet normalized within communities. For instance, a PWTO said,
…you can't get naloxone unless you say you're an addict. Or, supporting an addict and then the addict has to come with you. Like I think that it should be available to whoever wants it.
In addition to participants with lived experience, providers likewise expressed concern that naloxone was not easily available in public spaces where overdoses (similar to heart attacks) have occurred, such as restaurants or coffee shops,
Provider: Well, I mean you could even go as far as having it like an AED, right? We have it [AED] all in community centres. Why don't we have naloxone boxes that you could put beside your AED, with training? Or parks, or anywhere. Or, downtown Toronto on Yonge Street, you know? Anywhere.
Participants discussed how accessing naloxone could be difficult for individuals due to the centralized nature of distribution via pharmacies. Providers discussed an alternative approach of peer distribution as a means to make naloxone more readily accessible to those at risk for overdose,
Provider: Another issue that we've seen that you just made me think of, was being able to train peers or people who are users and live in buildings where there's high use, to be able to teach them, like, have the certification, the requirements, the authorization if you will, like, from a particular organization to distribute naloxone. ... So, I think peer distribution of naloxone is huge.
Furthermore, jurisdiction could ultimately dictate how readily available (and accessible) naloxone is. Taking Ontario as an example, a provider indicated that there are northern regions of the province with relatively few pharmacies per capita, yet these communities have a disproportionately high concentration of individuals at risk for overdose,
Provider: … we are hit really hard by opiate addiction. So, there has to be a way of rolling out naloxone. And, we use what we call 'unregulated care providers' to deliver our Suboxone programs…So, we actually train what we would call 'lay people' to be able to do medical things….
Participants emphasized that community-based (or peer) distribution of naloxone should be an essential component of intervention design, as it would help naloxone branch out more effectively from the professional sphere (such as pharmacies) and allow it to become a more readily accessible first-aid medication for lay-users.
3.3 Narrative around naloxone
In discussions, professional and lay views coalesced, which helped develop a broader understanding of what the overarching public narrative is like surrounding naloxone. Notably, what seemed to hinder the wide-spread uptake of naloxone within community settings was stigma, whereby naloxone is commonly associated with injection drug use, and PWTO are prone to encounter negative perceptions of others. For example, a person with lived experience believed that naloxone would only start to become more widely accepted and respected if it played to the hearts of Canadians (appealing to empathy) and was seen as a life-saving medication that could be used to save someone you love,
…when that young woman… a couple years ago died, then everybody was talking about Naloxone, right? And, that's when you hear about naloxone…
This “young woman” portrayed above is described as an unlikely victim of overdose. The participant presents them as someone who the public would not normally expect as needing naloxone. Contrary to this “young woman”, a provider participant painted a different picture in their account of what appear to be ‘repeat offenders’ who health care providers can lose compassion for,
Provider: We definitely see the stigma associated with it even within our own practice. ‘This is not our job.’ ‘We don't have time to deal with this.’ ‘This is your 'get out of jail free card.' ‘This promotes drug use’. We hear this and we see this in our practice. So, there's blaming and shaming with individuals who use.
Furthermore, providers spoke about difficulties generating public support for naloxone and harm reduction programming in contrast to public acceptance of governments other major safety concerns,
Provider: When you think of all the funding and public service announcements that go into car safety; seatbelts, roads, traffic, all the money that goes into keeping us safe on the road. ...But, we can't accept that people are going to continue using [opioids]. They're not just going to stop, so how do we figure that out? It's a massive problem.
The core goal of using naloxone is to save a person’s life, yet participants indicated that an abstinence narrative had detracted attention away from accomplishing this fundamental goal:
Person with lived experience: ... it's that fear of, if I'm using by myself and I OD what do I do, you know? That's a big fear. So, yeah. Especially when you've been clean and you know your family and friends know that you've been clean, you don't want to phone them up and say ‘I'm going to use, can you call me in half an hour and make sure I'm okay?’ ...
Here we see that PWTO do not always feel comfortable opening up to others (especially family members) about their drug use practices, and subsequently, use alone. Alternatively, some PWTO may take a more advocative stance against an abstinence narrative and actively try to make naloxone readily available for people injecting opioids,
Person with lived experience: She [girlfriend] was the best advocate, you know. She was such an advocate for it, you know like every time that we used together, we'd always say, ‘hey I've got a kit’ and she'd be like, ‘yep I've got one too.’
As described above, this participant perceived social relationships and interactions as critical in terms of the uptake of naloxone within the context of taking opioids. This points to the value of supporting social relationships and ties for OEND programs.
More directly, the results indicate a variety of design considerations for OEND (Table 2) that can be summarized as follows:
Design Considerations and Requirements for OEND toolkit
1. Recognizing an overdose may not be straight forward
• Training should support rapid response,
• Include messaging that naloxone is safe to use in any unresponsive person, and will not cause any harm
2. Responders may not know “how much is enough”
• The kit should be designed so that the responder does not need to make dosing decisions
3. Stigma may reduce the likelihood and pace of response as well as the likelihood of asking for, giving out, and accepting the offer of a kit and training
• An anti-stigma approach in aesthetic choices, language use, and tone, is necessary to reduce potential barriers to response
• The choice of nasal naloxone in take home naloxone distribution kits is suggested to reduce stigma, reduce potential training requirements, and increase likelihood of timely response
4. drug paraphernalia may be both stigmatizing and a potential legal risk to lay responders
• The choice of nasal naloxone in take home naloxone distribution kits is suggested to increase uptake among individuals who may be deterred by needles and ampoules
5. There is a need to move overdose training and response beyond the professional sphere and beyond those immediately at risk who may already be responding and comfortable with needle-based naloxone
• Design choices should position overdose response as a conventional first aid intervention,
6. There is high potential for overdose alone and there is a need to support the option of response by a friend or family member
• The design needs to support sharing with others (both training and kit), recognition as a first aid supply, positioning the kit as part of a safety plan
7. Calling 911 may be thought of as not a “safe” option for those that use drugs and their family and friends
• The training kit should emphasize calling 911, but also support response where 911 is not called.