The CAPACITI sessions ran consecutively from January 2020 to March 2021, except for a six-month adjournment from April to August 2020 (following session 3), due to the COVID-19 pandemic. Initially, 26 primary care teams enrolled in CAPACITI. Four teams (27 participants) withdrew following the third session (March 2020) due to pandemic restructuring of their teams. Ultimately, 22 teams (159 participants) completed CAPACITI. This included: 12 Family Health Teams, 7 Community Health Centres, 2 nurse-practitioner led clinics, and 1 Aboriginal Health Access Centre. The number of participants per team ranged from 2 to 15 (median = 7). Half of the teams served rural communities, defined by Statistics Canada as communities with a core population of fewer than 10,000 people.31 Table 1 further describes the participant demographics.
Table 1
Demographic Characteristics of CAPACITI Participants (N = 159)
Profession or Role | Number | Percent |
Physician | 39 | 24.5 |
Registered Nurse | 29 | 18.2 |
Nurse Practitioners | 28 | 17.6 |
Administrator, Manager, or Case Coordinator | 27 | 17.0 |
Social Worker | 15 | 9.4 |
Pharmacist | 7 | 4.4 |
Registered Practical Nurse | 7 | 4.4 |
Dietitian | 4 | 2.5 |
Other | 3 | 1.9 |
Worked at Current Site | | |
Less than one year | 30 | 18.9 |
One year to less than two years | 22 | 13.8 |
Two years to less than five years | 29 | 18.2 |
More than 5 years | 78 | 49.1 |
Open-text survey data were collected from members of all 22 teams. In total, 86 team members (54.1%) provided comments at the mid-point and/or post intervention survey. Reflection data were collected from a total of 21 teams, with each team providing two to nine session specific reflections. Fifteen unique teams participated in the midpoint focus groups (8 teams) and/or final focus groups (12 teams). Each focus group involved 2 to 12 attendees (median = 5). Focus groups ranged from 25 minutes to an hour, with most lasting approximately 45 minutes.
Three core themes were identified from the three sources of data: 1) changes in practice or knowledge derived from CAPACITI, 2) utility of CAPACITI components, and 3) barriers and challenges to enacting CAPACITI in practice. These were treated as parent themes, which encompassed 12 subthemes (see Table 2). There were no notable differences in the major themes between data sources. All quotes provided are from focus groups unless otherwise specified.
Table 2
Themes and Subthemes | Description/Examples |
Changes in practice or knowledge derived from CAPACITI | Ways in which CAPACITI changed (or did not change) team thinking or practice |
Early identification | Changes in identifying patients who could benefit from palliative care earlier in the disease trajectory |
Communication skills | Changes to communication skills within teams and with patients |
Applying a palliative approach to care | General changes in applying a palliative approach to care in practice |
Improved teamwork | Changes in collaborative efforts in palliative care both within teams and through outreach to external providers |
Utility of CAPACITI components | The perceived utility of specific elements of CAPACITI. |
Monthly assignments | Optional exercises for teams to become acquainted with applying CAPACITI components in practice, e.g. creation of a palliative care registry |
Cheat sheet | Summary of core lessons from CAPACITI on an easy-to-reference handout |
Mentorship | Consultation with an assigned palliative care expert external to team organizations to assist with learning outcomes |
Barriers and challenges to enacting CAPACITI in practice | Internal (team- or context-based) factors caused teams to struggle with applying CAPACITI learnings in their practice |
COVID-19 pandemic | Impact of the pandemic on completing CAPACITI, e.g., move to virtual-only meetings, balancing increased workload demand |
Competing demands | Time constraints in completing CAPACITI components, coordinating schedules between time zones, or difficulty in scheduling mutually available times within teams |
Team fragmentation | Lack of team integration, funding restrictions, and distal proximity of team members |
Lack of confidence or opportunities to practice | Low individual/team comfort levels in providing palliative care, low volume of seriously ill patients to apply CAPACITI learnings |
System-based challenges | Geographic limitations of access to care, system fragmentation, and a lack of team integration |
Theme 1: Changes in practice or knowledge derived from CAPACITI
This theme highlights teams’ perceptions of how attending CAPACITI sessions and completing the related activities translated to changes in practice. Four subthemes emerged from the teams’ responses on advances made: 1) early identification, 2) communication skills, 3) applying a palliative approach to care, and 4) improved teamwork/collaboration.
Early Identification
Many providers expressed that CAPACITI helped them identify patients who might benefit from an early palliative approach to care. Teams reported implementing various screening tools (such as the Palliative Performance Scale or the Prognostic Indicator Guidance) or running queries in their electronic medical records (EMRs).
“[Our] team found it helpful to have tools that can be utilized for the early identification of palliative patients. This has increased our confidence in our ability to accurately identify palliative patients from our large roster size. [We have] identified palliative patients by running an EMR query using conditions listed in the PIG [Prognostic Indicator Guidance] and in the supplementary material from CAPACITI (EMR algorithm). [And given our providers the] list of query results to see if they agree that the identified patients would benefit from palliative care approach.” (Team O Reflection)
Many of the teams reviewed their caseloads with a new lens for identifying patients early in the disease trajectory rather than at end of life:
“I felt like going through CAPACITI, [we are] definitely identifying palliative care patients earlier… Before CAPACITI, I would say, you know, pretty much end of life, I [could] count [them] on my hand… But now it's a bit more early on identifying patients. I've really kind of changed.” (Team B)
Communication
All teams described how their approaches to communication with patients and their families changed because of CAPACITI. Participants explained the importance of initiating conversations about the disease trajectory and destigmatizing palliative care:
“I think the communication strategies are probably the most important because [of] the understanding of what the definition of a palliative approach is… if you don’t have that on your radar, or the mindset about it, then you’re going to miss a lot of these people, [and] being able to have that understanding of that approach will take the fear out of the term palliative care for patients because we’re talking about it with them as an everyday occurrence.” (Team C)
Initiating early palliative care discussions with individuals rather than restricting these conversations to end-of-life was emphasized:
“Identifying patients who could be potentially palliative was kind of eye-opening, so we can initiate conversations earlier rather than waiting until they’re end-of-life… and actually defining and reframing palliative care – since so many providers think palliative is end-of-life, and patients and families think palliative is end-of-life – they don’t see it as a reframing of their treatment plan. So that’s been really helpful.” (Team W)
Some teams reflected on the importance of first gauging the patient’s readiness before initiating conversations about care:
“The session about conversations…really struck me. [Patients] may not have a lot of information about their illness, and the prognosis and the progression. But don’t go there if they’re not emotionally able. First, you have to go with the emotional availability to want to know more. I thought that was really key in how a conversation could go sideways, and frustration from ‘well, why aren’t we talking about this.’ First you have to lay the groundwork in the emotional readiness. I thought that was great and really helpful.” (Team I)
Teams expressed previous discomfort towards having serious illness conversations, and that better efforts were made as a result of completing CAPACITI:
“It's made me reflect… It might be a little bit uncomfortable, but it is worth it to have those conversations earlier so that it’s not more stressful and chaotic at the end of life when it shouldn’t be.” (Team I)
Applying a palliative approach to care
Many teams described how their approach to palliative care had changed, as demonstrated through their recent interactions with patients and families. Participants shared how CAPACITI had positively changed the way they think about palliative care:
“We're planning to make changes. We're going to meet and talk about changing in terms of our team capacity. As an individual, it [CAPACITI] has got me thinking differently. I try to have more of those conversations about a palliative approach with people.” (Team W)
Some participants shared that they started making appointments for their patients to meet with their primary care provider to initiate care planning conversations:
“From the perspective of an outreach nurse… [CAPACITI] has encouraged me to try to book my clients with their primary care providers for appointments that are just going to address future planning and having those discussions separate from their regular appointments for their chronic disease management. It’s been more challenging under the context of COVID, but I’m a little more aware of doing this consciously.” (Team U)
Further, others expressed that their approaches have become less biomedical and more informed by the patient’s own comfort levels and emotional receptiveness to having care planning discussions:
“[We’re] getting a better sense of what patients understand about their illness and how much they would like to know [to] allow a more collaborative and patient centred approach. [Our] providers are more willing to wait and to not try and fill in the blanks but make more space for clients to describe what is important to them at that moment.” (Team I Reflection)
“Whenever I see a patient with a life limiting illness, even if it is very early on, I think through the tools and I think like the within a year tool, or the surprise question [i.e., would you be surprised if this patient were to die in the next year?32], I think of those now, every single time, which I hadn’t been doing before. So even though it’s not always formal, I don’t document on it, or I don’t put them on the registry that we did create, I think about that a lot more, which has been very helpful.” (Team E)
Improved teamwork
Most teams reported greater collaborative efforts within their own primary care teams and through outreach to relevant specialists and community-based organizations. Previously, some teams expressed that while team members were independently practicing a palliative care approach, a coordinated strategy was absent. CAPACITI inspired the adoption of a more unified approach:
“In the past our providers didn't have a clear understanding that they could connect with our local specialists for palliative care consultation. Some of our providers are of the mind set to let the specialist do their job and the family physician will do theirs. CAPACITI helped them [our team members] understand that it's a team effort and have engaged with clients more to increase communication with specialists.” (Team T Reflection)
Efforts to strengthen interdisciplinary care reduced system fragmentation and repetition of information across multiple sources:
“It is essential for us to build a multidisciplinary team that has a clear communication protocol when it comes to patient care. A team that communicates consistently to [the] patient and establishes regular goals eliminates the potential of repetition in obtaining information.” (Team U)
“Our team is becoming more excited, cohesive, and understanding of the vision of the palliative care team we are foreseeing in the future. Each session brings one more piece of the missing puzzle, and a concrete vision and plan are forming.” (Team Y)
Theme 2: Utility of CAPACITI components
This theme describes the perceived usefulness of CAPACITI components in primary care practice. The format and content were generally well regarded by teams. Three main components of CAPACITI were consistently outlined by respondents: the 30-day assignments, sessional cheat sheets, and arranged mentorship with a palliative care specialist.
Monthly Assignments
The most widely implemented 30-day assignment was from the second session. This assignment asked participants to create a registry to identify patients in need of a palliative approach to care. Eight teams shared that they had been successful in establishing a palliative care registry within their respective practices.
“The registry was good to build so that we know which patients are maybe pre-palliative or tolerated palliation early [in their illness trajectory].” (Team B)
Apart from establishing a registry, other assignments reported as being attempted were application of the communication tools (Session 5) and scheduling team meetings to discuss components of CAPACITI and create an operationalization plan (Starting session 1).
Cheat Sheets
The cheat sheets were highly regarded by the teams. Many viewed these primers as a helpful summary of CAPACITI’s lessons and a way to share this information with team members who were unable to attend the session webinar:
“The cheat sheets… were a great summary of everything that was discussed. It was a great way to communicate to physicians who were not able to attend the meeting.” (Team N)
Mentorship
The nature and perceived utility of the relationship with the assigned palliative care specialist mentor varied across teams. Most teams did not connect with their mentor as much as they had hoped, and some did not use their mentor at all. This was, in part, due to scheduling conflicts or shifts in practice because of the pandemic. Some teams explained that they did not have any patient encounters where they felt it necessary to engage the mentor. We also offered access to a forum of palliative care experts where the teams could pose their CAPACITI related questions, however no teams used the platform.
“I think we talked to our mentors once. We probably could have reached out to her. But we never really had any big questions that we needed to reach out for.” (Team V)
Theme 3: Barriers and challenges to enacting CAPACITI in practice.
Teams reported barriers to participating in CAPACITI that also posed as challenges to operationalizing the program material in practice. Challenges that were often discussed included the COVID-19 pandemic, competing demands, funding limitations and team fragmentation, lack of confidence or opportunities to practice, and team or system-based issues.
COVID-19 pandemic
CAPACITI was paused for five months at the beginning of the pandemic. As such, the COVID-19 pandemic was cited by almost all teams as a strong impediment against attending CAPACITI sessions, completing assignments, and adopting content into practice. Teams highlighted the pandemic’s impact on their ability to meet in person as a team, discuss, and participate in CAPACITI:
“We ran into some struggles because of not being able to be together all the time and doing certain things because of this pandemic. So, for some of the challenges [activities], we were able to do them as best as we could, but maybe not to the fullest.” (Team N)
“All efforts around CAPACITI have become very difficult since onset of COVID in March as MDs and staff have been redeployed to various degrees.” (Team A Open Text Survey)
Competing Demands
Several teams shared that competing demands and having a lack of time were significant obstacles in completing CAPACITI. A few teams indicated that motivation to finish the program wavered towards the end, largely due to CAPACITI continuing for over a year and the teams experiencing internal changes during this expanse of time. The pandemic exacerbated time restraints in the unprecedented shift to remote work due to social distancing protocols and the need for teams to redeploy their staff to manage different priority areas. For many teams, CAPACITI became a low priority. Teams also cited difficulties in finding mutually available times for them to go through CAPACITI materials, as well as general competing interests in primary care, regardless of the pandemic:
“I think that the challenge… was just being able to implement the [lessons] and having the time to sit down and discuss how we’re going to implement things. There were a lot of competing interests. There were lots of challenges aside from this particular project for the organization… it would have been nice to have been able to devote a lot of our time to CAPACITI.” (Team G)
Team fragmentation
Some teams described that funding limitations and lack of team integration, role clarity, and interprofessional communication were barriers to their participation and adoption of content into practice, especially in rural areas. The physical distance between the members of some teams presented a barrier to coordinating and participating in CAPACITI activities:
“A barrier was role clarification and continuing to understand the purpose of CAPACITI and how the program will help us develop structure and function as a team within our large organization, especially since most providers work across different offices.” (Team O)
“The main barrier our team encountered was the communication issue… we were not able to communicate effectively with other teams because of geographical location and time constraints. This was a major obstacle.” (Team U)
Teams also discussed internal issues, such as how competing interests between team members and/or lack of team collaboration, posed a challenge to fully participating in CAPACITI:
“We as a team needed to commit to doing that [CAPACITI], because it is very easy to just put it off to the side. So, we really need to strategize a way to make sure that it is and stays relevant and in front of us the whole time.” (Team I)
Lack of confidence or opportunities to practice
Participants expressed discomfort in placing the palliative ‘label’ on patients, particularly due to the implication of end-of-life or believing that it may be too early in a patient’s disease trajectory to introduce this approach:
“I do think that there is always a hesitation to put that person into that box… There is a huge hesitation, and I’m thinking maybe it’s too early to do that. I don’t know. It wouldn’t surprise me at all if the rest of the team wouldn’t even be thinking of [a patient] as palliative.” (Team Z)
Some teams shared that they did not see many patients in their daily practices that could benefit from a palliative approach to care, and therefore did not have the opportunity to practice their skills:
“The biggest barrier is clinical confidence when dealing with more complicated [palliative care] cases. [It’s] one thing if you do it every day, but at the frequency I’m doing it, it’s always like I have to look it up all over again.” (Team G)
System-based challenges
Several teams described barriers including lack of system integration and distance from other care settings and providers, particularly in rural locations. Certain teams expressed obstacles inherent to their location such as the nearest pharmacy being over 2-hours away or that the closest specialists and doctors were over 500 kilometres away or outside of the province, thereby hindering opportunities for interprofessional collaboration.
“We take for granted that we have all these services available, and we can call on them… but getting everyone to work toward the same goal is a challenge for us, and we continue to try to address it.” (Team G)
“There’s a few of those system barriers as well…some of those silos still exist. It makes it a bit of a challenge to accomplish some of those goals set out.” (Team X)