palliative care case study examples for nurses

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Case Study 3 – Palliative and End-of-Life Care

Click here to review the draft palliative and end-of-life care – interactive case study..

The following case vignette provides key concepts that could be considered when developing a plan of care for a patient who may require a controlled substance to manage their health concerns. As with any clinical situation, there are many patient variables that must be considered, including comorbid conditions, social determinants of health and their personal choices. You may choose to include different or additional health history and physical examination points, diagnostic tests, differential diagnoses and treatments depending on your patient’s context however this case vignette focuses on the aspects relevant to controlled substances.

Danny Kahan NP-Adult, specialty is palliative care Joshi Kamakani – 70 year old male with metastatic prostate cancer June Kamakani – patient’s wife Kelli Kamakani – patient’s 40 year old daughter

Danny is reviewing the patient history outside the house or in the car before visiting the patient.

Joshi Kamakani is a 70 year old retired engineer that the Palliative Care home care team and I have been looking after at home for the last two months. Joshi was diagnosed with inoperable prostate cancer three years ago and has been treated with ablative hormone therapy. Six months ago, Joshi started to have pain in his hips. His oncologist ordered a CT scan and found he had metastases in his ribs, pelvis and lumbar spine. Joshi and his wife June had a meeting with the team at the cancer centre and decided not to go ahead with any further cancer treatment. Our team has been involved since. June called me yesterday and asked me to make a home visit. Joshi has been having more pain this week and has been spending most of his time on the couch. He cannot get around without assistance and is very fatigued.

Joshi’s past medical history includes hypertension and reflux. He is taking Predisone 5 mg PO BID, Leuprorelin Depot 22.5mg IM every 3 months, hydrochlorothiazide 25 mg daily and pantoprazole 40 mg daily.

For pain, Joshi takes Morphine slow release 100 mg q12h and has not needed additional medication for breakthrough pain so far.

Takes place in the home. Patient is seen reclining on couch in first floor living room. Wife and daughter present.

Danny rings the doorbell and June lets him in.

June: Hi Danny. I’m so glad you’ve come.

Danny takes off his coat and shoes and walks into the living room. Kelli is sitting with her father who is covered up with a blanket on a couch in the main living area – he is awake but obviously drowsy. He smiles at Danny and holds out his hand. Danny shakes it a sits down in a chair opposite.

June: His pain killers just are not working any more – he’s uncomfortable when he is resting and it’s worse when he has to move around. It’s been happening for the last few weeks. He hasn’t had a fall but he is unsteady on his feet – especially soon after he get up. Joshi: I tried some acetaminophen from the drug store a few days ago but it really didn’t work. Kelli: Danny, you have to do something. He’s so uncomfortable. Danny: OK let’s talk about this a bit more. Joshi, were you sleepy after we increased the morphine 2 weeks ago? You were at 80 mg for each dose and now you are at 100 mg. Joshi: I was a bit sleepy for a few days and I had a bit of a weak stomach but that is gone now. I am a bit constipated though. Danny: when did you have your last bowel movement? Joshi: 4 days ago. Danny: OK we will have to address that today. I’d like to use the scale that I used at our last visit, it’s called the PPS, to assess your level of activity. ( Edmonton symptom assessment scale and Palliative Performance Score). Your PPS is 40% – last time I visited you were at 60%. June: yes, he is definitely having more trouble. I think the pain is preventing him from moving and that’s just making everything worse.

Danny: Joshi, your pain interference score tells me that the pain is severely interfering with your activity and I see that you are rating your current pain at rest at 6/10 and at 10/10 when you move. When I examined you, I did not note any changes from my last visit except for some new swelling over your left hip. June: Yes that’s where it is most sore – and before you ask, I am not going to the hospital for an xray. Kelli: Why can’t you just double his dose?

Danny [THINKS]: I will also add a bowel regime to address Joshi’s constipation and provide an order for a PRN anti-nauseant like metoclopramide or ondansetron. Joshi and his family will need to have education about the timeline of the peak benefit of the change in the regular dose, keeping track of PRN use, proper use of breakthrough medications (before care or any activity that causes pain), any other interventions we can include to help with his pain including adding other medications.

June: Danny, can I speak to you in private for a moment? June and Danny move to a private area of the house. Kelli and Joshi remain on the sofa. June: Danny, I have some concerns about having extra medication in the house and I need some advice on how to deal with this. My daughter had a real problem with drugs when she was in high school. She had to have treatment and as far as I know, she has been clean for the past 2 years. I have talked to her about having medication in the house and she tells me she’s not tempted but I really want to be sure we don’t have any incidents. I trust my daughter but I do worry that some things are beyond her control. Danny: Well June, it is always a good practice to have a plan for safe storage of medications. Here is some information about where you can purchase a locked box. I recommend you keep a key and have the hospice nurse take the other and have it numbered and controlled at the hospice office for the use of the nurses that care for Joshi. In the meantime, keep the medications in a place that you and Joshi can monitor and please keep a count of the medication in the containers and continue to write down when medication is given. June: Thanks Danny – I don’t want my daughter to think I don’t trust her. This should help.

Two weeks later – Danny is back in his office reviewing Joshi’s file with a Nurse Practitioner student…

Follow-up case question by Danny.

Student: Next up is Joshi Kamakani for review… Danny: Well, I’ve just been to see Joshi and his family. It has been two weeks since we increased his dose of morphine SR. We also added a neuropathic pain agent to help with his pain which has made him a bit more drowsy. He continues to take 20-30 mg breakthrough morphine/day and I noticed today that he has some myoclonus. Joshi’s pain is still in the moderate range with activity and now nausea is a problem.

Opioid rotation and opioid equianalgesia from NOUGG (McMaster Guidelines).

Danny: I think a rotation of opioid is the next step. Student: What medication should Danny consider and at what dose?

Danny: Joshi is using 270 mg oral morphine equivalents per day. To convert this dose to hydromorphone, the medication I have chosen to rotate to, we multiply by 0.2. Morphine 270 mg x 0.2 = 54 mg hydromorphone/day. We will want to convert 60% of the total daily dose so 54mg x .6 = 32mg. I want to give Joshi the new dose in a slow release form. It is most practical to provide Joshi with hydromorphone SR 15mg q12h and also provide him an additional 2-3 mg of hydromorphone immediate release for breakthrough pain. Providing him with the breakthrough dosing will be sure Joshi can have additional medication to help him until we are sure we have a stable, effective dose in 48-72 hours.

Learning Outcome

This interactive case study covered the following information:

• Opiate Titration
• Opiate Rotation
• Pain Assessment
• Assessment of adverse effects
• Safety Assessment
• Collaboration
• Family centred care

• Open access
• Published: 28 September 2023

Implementing palliative care education into primary care practice: a qualitative case study of the CAPACITI pilot program

• Midori Matthew 1 ,
• Daryl Bainbridge   ORCID: orcid.org/0000-0001-9249-8229 2 ,
• Valerie Bishop 2 ,
• Christina Sinding 3 ,
• Samantha Winemaker 4 ,
• Frances Kilbertus 5 ,
• Katherine Kortes-Miller 6 &
• Hsien Seow   ORCID: orcid.org/0000-0001-6701-1714 2  

BMC Palliative Care volume  22 , Article number:  143 ( 2023 ) Cite this article

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CAPACITI is a virtual education program that teaches primary care teams how to provide an early palliative approach to care. After piloting its implementation, we conducted an in-depth qualitative study with CAPACITI participants to assess the effectiveness of the components and to understand the challenges and enablers to virtual palliative care education.

We applied a qualitative case study approach to assess and synthesize three sources of data collected from the teams that participated in CAPACITI: reflection survey data, open text survey data, and focus group transcriptions. We completed a thematic analysis of these responses to gain an understanding of participant experiences with the intervention and its application in practice.

The CAPACITI program was completed by 22 primary care teams consisting of 159 participants across Ontario, Canada. Qualitative data was obtained from all teams, including 15 teams that participated in focus groups and 21 teams that provided reflection survey data on CAPACITI content and how it translated into practice. Three major themes arose from cross-analysis of the data: changes in practice derived from involvement in CAPACITI, utility of specific elements of the program, and barriers and challenges to enacting CAPACITI in practice. Importantly, participants reported that the multifaceted approach of CAPACITI was helpful to them building their confidence and competence in applying a palliative approach to care.

Conclusions

Primary care teams perceived the CAPACITI facilitated program as effective towards incorporating palliative care into their practices. CAPACITI warrants further study on a national scale using a randomized trial methodology. Future iterations of CAPACITI need to help mitigate barriers identified by respondents, including team fragmentation and system-based challenges to encourage interprofessional collaboration and knowledge translation.

Peer Review reports

Introduction

A palliative approach to care emphasises early involvement of palliative care beginning upon diagnosis of an incurable illness or progression of a serious illness, [ 1 ] incorporating the World Health Organization’s (WHO) definition of this care as a holistic approach that improves quality of life of patients and their families facing problems associated with serious illness through prevention and relief of suffering and treatment of distressing symptoms [ 2 ]. A palliative approach to care has been demonstrated to improve patient and family outcomes when used by community-based primary health care teams [ 3 , 4 ]. Primary care is the first point of entry to the health care system and provides longitudinal relationships for patients, which is conducive to continuity of care. As such, primary care providers are well positioned to identify their patients’ need for palliative care and commence this approach early in the disease trajectory. Research shows that primary care teams are willing to provide palliative care, but experience a lack of structural supports (e.g. financial incentives, interoperable electronic medical records, etc.) to apply this approach in practice [ 5 , 6 , 7 , 8 ]. Moreover, practical supports, such as strategies to help with identification, coordination, and communication are also needed to help operationalize a palliative care approach into practice [ 9 , 10 ]. Interactive palliative care education programs that incorporate participant discussion and/or coaching have shown promise towards effective practice change; [ 11 , 12 , 13 , 14 ] though most of these prior interventions were in-person, intended for a single provider profession, and/or focused on communication skills [ 15 , 16 , 17 , 18 ].

We developed and piloted CAPACITI (Community Access to PAlliative Care via Interprofessional Teams Intervention) as a virtual, comprehensive education program designed to provide advice, strategies, and plans of action to assist primary care teams in operationalizing an early palliative approach to care. The program was both designed and facilitated by an interprofessional team of palliative care researchers and health care professionals (physicians, nurses, social workers, etc.) to enhance the existing capacity of primary care teams without requiring ongoing financial support. CAPACITI serves to complement existing educational interventions, which teach palliative care skills, through case-based, interactive education sessions, and thus emphasizing the application of knowledge in practice. In our prior studies, CAPACITI participants reported significant increases in their identification of patients requiring palliative care, competency in providing care, and team collaboration following the intervention [ 19 , 20 ]. While studies of other palliative care training interventions have demonstrated a positive influence on provider-reported outcomes, [ 15 , 21 , 22 ] it remains less clear how and to what extent the elements of these programs are effectively integrated into primary care team practice.

The objective of this study was to qualitatively explore the experiences of primary health care teams in Ontario, Canada who participated in the CAPACITI pilot. We sought to understand the factors that helped or hindered participating teams in applying CAPACITI components in practice. In this article, we synthesise and interpret findings from focus groups, monthly reflection survey data, and open-text survey data to determine the effectiveness of CAPACITI in supporting participants to provide an early palliative approach to care.

Study design and participants

We used an embedded case study approach as described by Yin [ 23 , 24 ] to analyse and synthesize three sources of qualitative data collected from participating primary health care teams: monthly reflection survey data, open text survey data, and focus group transcriptions. A case study approach is highly applicable to program evaluation, allowing for the explanation, description, and exploration of multifaceted, complex processes in their natural context across multiple data sources [ 25 , 26 , 27 , 28 ]. The unit of analysis or phenomenon of interest in this case is the CAPACITI program and the three data sources are the embedded sub-units.

Primary health care teams working in Ontario, Canada were invited to participate in CAPACITI via primary and palliative care networks and organizations. Teams were invited to enrol in CAPACITI through advertisements across provincial primary care associations and through palliative care networks and organizations. Participating teams worked in community-based practices, had to be willing to do palliative care home visits, and were comprised of at least one prescriber (physician or nurse practitioner) and other interprofessional care providers. CAPACITI was tailored towards general practitioners, nurses, and allied health professionals as well as team administrators seeking to incorporate a palliative care approach into their practice. Before enrolling in the program, it was recommended that participants complete an educational course such as Pallium Canada’s LEAP Core, which teaches essential clinical competencies in palliative care such as symptom management, addressing psychosocial needs, and advance care planning [ 29 ]. CAPACITI was offered free to the teams, and our study did not provide any financial incentives or compensation to participants. Ethical approval for this study was obtained from the Hamilton Integrated Research Ethics Board (#7054).

CAPACITI pilot intervention

In this initial pilot implementation of CAPACITI for primary care teams, we conducted 10 facilitated, hour-long modules once per month. All sessions were conducted virtually on-line via the Zoom Video Communications application. Each session centered around a core component of implementing a palliative care approach into primary care practice. The module topics included enhancing communication skills, early identification and assessment, team building, and engaging with caregivers and specialists (Supplemental Document 1). The development of CAPACITI was previously described in detail in a single cohort study of the pilot data [ 19 ].

All sessions included (1) educational support for clinical practice through the provision of expert advice, (2) evidence-based tools (such as the Prognostic Indicator Guidance [PIG] which supports early identification of patients who may require a palliative approach to care), [ 30 ] and (3) coaching and facilitation to support practitioners to tailor knowledge, skills, and tools to their regional contexts. Each session began with an hour-long virtual webinar, comprised of an instructional segment followed by an interactive session with a palliative care expert clinician (palliative care physicians and nurses with 10 + years’ experience working in this specialty) who was able to answer questions, offer advice, and share their personal experiences (Fig.  1 ). CAPACITI included several resources to encourage the adoption of content into practice: a “cheat sheet” (a summary of the strategies presented in the webinar) and a 30-day assignment (an action to be attempted in practice, e.g., application of prognostic tools with a patient) (see Fig.  1 and Supplemental Document 1). In addition, each team was paired with a palliative care specialist mentor that they could contact for advice for the duration of the program. Teams were also assigned a CAPACITI facilitator (DB, MC, KM) who was a contact person to guide them through the program. All program resources were available for participants to download and review.

CAPACITI Learning Components

Data collection

Data collection consisted of: 1) Written responses to a reflection survey that was completed by teams following each month-long session (two to four weeks afterwards collected via email; 2) Open text data from the midpoint (post session 6) and post intervention questionnaires asking for feedback on participating in CAPACITI, collected via an online survey (SurveyMonkey); and 3) Focus groups with individual teams at the program midpoint and post intervention (see Supplemental Document 2 for the reflection survey questions, focus group discussion guide, and open text survey data). All teams were invited to participate in a virtual focus group (Zoom teleconference) at both time points, which were conducted by trained interviewers (DB, MC, KM, HS). Focus groups were semi-structured and asked about perceptions of the program and the impact it had on the teams’ thinking and behaviour. Development of the focus group discussion guide was informed by the Consolidated Framework for Implementation Research (CFIR 2) [ 31 ]. We selected CFIR because it is one of the most used and cited frameworks to assess multilevel contextual factors in program implementation and impact [ 32 , 33 ]. The five CFIR domains are intervention characteristics, outer setting (external influences), inner setting (internal factors), characteristics of individuals, and process of implementation. The focus group sessions were audio recorded, transcribed verbatim using Otter.ai software, and reviewed by the research team for accuracy. Teams that were non-responsive to data collection activities were contacted up to six times via email and/or phone call.

All data, including focus group transcripts, were analyzed using NVivo (version 14)qualitative analysis software. Two primary analysts (MM and VB) and a secondary analyst (DB) were involved in thematic analysis of the data. The analysts were from non-clinical backgrounds (health policy, public health, and health research methodology), with post graduate level training in qualitative research. The three analysts read through all the data and then independently coded the focus group transcripts from three teams. The data were reviewed for emergent themes and coded using the constant comparative method [ 34 ]. The analysts compared their individual findings for these three teams and consolidated coding approaches through discussion to meet consensus. Following this, a shared codebook was developed to ensure that researchers were operating on the same definitions of themes. This process was repeated by the primary analysts with the focus group transcripts for three additional teams, with the coding system revised as the analysis progressed. Once consistency in coding and thematic development was established, the primary analysts each coded half of the remaining transcripts and one analyst (MM) coded the reflection survey and open text survey data. The analysts independently reviewed and then discussed all coding, finalizing the themes derived from each data source and synthesising the overarching themes.

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 [ 35 ]. Most (75%) of the CAPACITI participants reported that they completed LEAP training prior to the program. Table  1 further describes the participant demographics.

Open-text survey data were collected from members of all 22 teams (2 to 13 members per team). 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 min to an hour, with most lasting approximately 45 min.

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.

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.

Sub-Theme 1.1 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).

Sub-Theme 1.2 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).

Sub-Theme 1.3 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? [ 36 ]], 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).

Sub-Theme 1.4 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.

Sub-Theme 2.1 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).

Sub-Theme 2.2 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).

Sub-Theme 2.3 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.

Sub-Theme 3.1 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).

Sub-Theme 3.2 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).

Sub-Theme 3.3 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).

Sub-Theme 3.4 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).

Sub-Theme 3.5 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).

We examined three sources of qualitative data to gain an in-depth understanding of what elements of the CAPACITI education intervention participating teams found useful and how they incorporated this acquired knowledge into practice. Three major themes were generated from our analysis: changes in practice or knowledge derived from CAPACITI, utility of CAPACITI components, and barriers and challenges to enacting CAPACITI in practice. Participants shared that CAPACITI helped them change their processes and behaviours, which included earlier identification of those who may benefit from a palliative approach to care and initiating serious illness conversations. Operationalization of other course content was less evident, possibly because teams worked on the early steps of CAPACITI but did not have a chance to focus on subsequent topics, or that efforts made towards these respective actions, for example proactive care planning, are difficult to articulate.

By instituting key elements of successful health care professional training programs demonstrated in existing literature, [ 37 , 38 , 39 ] the goal of CAPACITI was to translate knowledge into care via interactive sessions, ultimately, empowering teams to apply these principles within their context-specific practices. The tools, cheat sheets, and virtual format, along with the topics covered, were regarded by teams as effective elements of the program. CAPACITI encouraged processes to enhance ongoing interprofessional collaboration within the teams, including group problem solving and planning, information sharing, communication strategies, mapping of internal and external partners, and role determination. The utility of CAPACITI is supported by findings from systematic reviews that behaviours are most successfully changed by educational interventions that are participatory, use blended teaching modalities, synthesize learner reflection, and provide support for decision-making [ 18 , 40 , 41 , 42 , 43 ]. Teams attested that a strength of the program was the aim to enhance interprofessional collaboration and encourage team-based planning, beginning with the first session, “Building a Strong Team”. This objective aligns with evidence that training which facilitates interprofessional team-based care towards a learner-focused quality improvement plan, has the greatest potential for changing practice [ 22 , 40 , 44 ].

CAPACITI’s emphasis on strengthening interprofessional collaboration within primary care teams seemed to enhance continuity of care by helping teams to establish various means of communication and information sharing, as well as role clarity [ 45 , 46 ]. Prior studies have demonstrated that feelings of inclusion and an understanding of member’s respective roles are important enablers in promoting effective interprofessional practice within primary care teams [ 47 , 48 , 49 ]. Through CAPACITI, teams also gained comfort reaching out to external organizations and specialists in the community to solicit advice or to facilitate continuity of care between providers. Our findings are substantiated by research which demonstrates the contribution of interprofessional team collaboration towards providing a comprehensive approach to managing complex conditions, thus enhancing the quality of patient care and subsequent health outcomes [ 50 , 51 ].

Finally, to reach a wide audience of health care teams across Ontario in an accessible manner, CAPACITI was exclusively facilitated online. Several studies have reported that e-learning is one of the most successful tools to facilitate knowledge acquisition among health care providers due to its flexibility, accessibility, and ability to meet evolving and diverse educational needs [ 42 ]. The importance of a virtual format that promotes interactive learning and motivates participants to engage with others regarding the knowledge translated, has also been noted, particularly in teaching collaborative practice [ 52 , 53 ].

Barriers to knowledge translation have also been well described in the literature [ 41 , 42 , 54 ]. Some of these challenges were experienced and highlighted by CAPACITI participants, including lack of time, resources, team coordination, and system level cohesion. The program was intended to build on existing team capacity towards instilling a palliative approach to care, without requiring additional funding or resources. We posited that by changing the way health care providers think about palliative care and helping them to apply some tested strategies, a palliative approach to care can be integrated into practice. Many of the teams in CAPACITI demonstrated proof of this concept through identifying patients that could benefit from palliative care earlier in the disease trajectory, improved communication skills and comfort levels discussing palliative approaches to care with patients and enhancing teamwork. Nonetheless, training and implementation diverts time from regular work activities, which became more challenging with the advent of the pandemic. Strong buy-in and motivation is vital to changing practice, [ 55 ] qualities which were inconsistent among members and leadership in some teams. The barriers mentioned could also adversely impact job satisfaction and retention, impeding team-based knowledge transition activities and empowerment to implement change [ 56 , 57 ]. Some teams reported that they did not have the patient volume to become proficient with the skills taught. Others mentioned low confidence or worry about the emotional reaction when introducing the idea of “palliative care” with patients [ 58 , 59 , 60 ]. Despite these barriers, including those exacerbated by the COVID-19 pandemic, all teams that completed CAPACITI expressed that their involvement in the program resulted in positive changes in their thinking and approach towards palliative care.

Considerations

Our pilot study highlights aspects in the delivery of evidence-based content that require further examination, namely optimal program duration and the role of facilitation to enhance learning and behavior change. Although longitudinal palliative care education interventions that run for a year or longer are not uncommon, [ 15 , 61 ] the 10-month duration of CAPACITI, compounded by the six month break at the start of the COVID-19 pandemic, seemed too long to keep all teams fully engaged. We implemented the modules leaving one-month in between to allow teams time to apply the teachings in practice. However, some found this time lengthy, making it difficult to maintain momentum, while others needed more time to complete the activities [ 62 ]. To shorten the length of CAPACITI while preserving the content and maintaining a stepwise implementation plan, we would divide the 10 session pilot program into three shorter modules that would each take 3 months to complete and could be taken solely or in succession. Secondly, we offered facilitated sessions in an attempt to tailor the content of CAPACITI to the needs and context of the teams, using a virtual platform. There was an acceleration in the advent of self-directed online education with highly contextualized content as a result of the pandemic [ 63 , 64 , 65  A purely self-directed format may prove to be a cost-effective alternative to the live facilitated sessions we offered in CAPACITI and potentially preferred by participants as being more convenient. The findings from this pilot study will be applied to the development of a national randomized controlled trial to compare the effectiveness of self-directed education alone versus education with facilitation, in the delivery of a three-part, revised version of CAPACITI [ 62 ].

Limitations

A key limitation of this study is that not all teams participated in a focus group interview. Although we collected qualitative data from all teams, it is likely that those willing to participate in a focus group were more engaged in the CAPACITI program than those that did not, which may have biased our findings. Another limitation to the study was the effect of the COVID-19 pandemic on CAPACITI, which caused the program to be put on temporary hiatus due to the teams shifting their priorities. COVID-19 redeployment, team members working together less due to social distancing safety measures, and the extended length of CAPACITI likely contributed to participant attrition, hindered uptake of the program content into practice, and limited team collaboration. Despite this, most of the teams remained committed to CAPACITI and shared positive takeaways of their experiences. However, there may be bias in responses from those hesitant to mention issues that would reflect unfavourably on their fellow team members in a focus group setting. Rigorous testing of CAPACITI as a randomized controlled trial is warranted to determine the perceived benefits of facilitated education over a self-directed approach.

CAPACITI is a multicomponent educational program, designed to build palliative care capacity within primary care teams, intended be applied synergistically alongside other clinical training initiatives. Our qualitative analysis of this pilot program demonstrated that CAPACITI, and specifically this facilitated approach to knowledge translation, helped primary care teams develop the tenets towards applying a palliative approach to care. As we implement this program in diverse contexts, it is important to be aware of how intra-team interactions influence power dynamics and role clarity when providing care in a collaborative context. Future iterations of CAPACITI and other training initiatives also need to help mitigate local barriers, such as team fragmentation and system-based challenges to encourage interprofessional collaboration and knowledge translation. Team climate and readiness for change are also important aspects of team functioning and knowledge uptake to be considered.

Data availability

The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request.

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Acknowledgements

The authors wish to thank Maggie Civak (MC) and Kayla McMillan (KM) for their assistance with CAPACITI pilot facilitation and data collection.

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Canadian Institutes of Health Research [grant number 408099].

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Department of Health Research Methods, Evidence and Impact, McMaster University, Hamilton, ON, Canada

Midori Matthew

Department of Oncology, McMaster University, Hamilton, ON, Canada

Daryl Bainbridge, Valerie Bishop & Hsien Seow

School of Social Work, McMaster University, Hamilton, ON, Canada

Christina Sinding

Division of Palliative Care, McMaster University, Hamilton, ON, Canada

Samantha Winemaker

Northern Ontario School of Medicine University, Thunder Bay, ON, Canada

Frances Kilbertus

Department of Social Work, Lakehead University, Thunder Bay, ON, Canada

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HS, DB, SW, KKM, CS, and FK contributed to the conception of the study. MM, DB, VB, and HS drafted the manuscript. All authors read, edited, and approved the final manuscript.

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Correspondence to Hsien Seow .

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Ethical approval for this study was obtained from the Hamilton Integrated Research Ethics Board (#7054). Informed consent was obtained from all participants prior to commencing our study. All research design and data collection pertaining to this study were conducted in accordance with the Declaration of Helsinki.

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Matthew, M., Bainbridge, D., Bishop, V. et al. Implementing palliative care education into primary care practice: a qualitative case study of the CAPACITI pilot program. BMC Palliat Care 22 , 143 (2023). https://doi.org/10.1186/s12904-023-01265-7

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Palliative Care Case Studies – PCC4U

Self-directed learning.

Four modules and four focus topics, aim to support learning about palliative care in specific populations and contexts. These resources have been developed by PCC4U Palliative Care Curriculum for Undergraduate and used for palliative care education.  The following videos are designed to accompany written evidence based content and thinking points, however you will find the videos are useful tool on their own. More information about PCC4U and the learning resources can be found at  www.pcc4u.org.au  .

Reflections on What You Have Learnt

1.What key points have you learnt from the activities in this module that will help you in providing care for people with life-limiting illnesses and their families? 2.What specific strategies do you plan to incorporate as a graduate health care professional? 3.Do you see any difficulties using what you’ve learnt here as part of your practice as a health care professional? If so, what strategies might you use to address these difficulties?

**Acknowledgement: All modules and topics have been provided by PCC4U Palliative Care Curriculum for Undergraduates ( www.pcc4u.org.au )

Core Modules

This module will help you develop the knowledge and skills needed to provide quality care, across various health care settings, to people with life-limiting illnesses and their families.

Aims & objectives

You’ll develop an understanding of the social and personal experiences of people with life-limiting illnesses and their families. This module will also cover principles of palliative care.

After completing this module, you should be able to:

• analyse the impact historical trends have on community perceptions about death, dying and bereavement in contemporary society
• recognise how your own values and beliefs about death and dying affect your responses and interactions with people with life-limiting illnesses and their families
• describe the core principles of palliative care.

Watch the  case study here .

For further learning on the Principles of Palliative Care, visit the  PCC4U website – Module 1: Principles of palliaitve care.

This module will help you develop your skills in communicating with people with life-limiting illnesses and their families.

• demonstrate the principles of effective communication when interacting with people with life- limiting illnesses and their families
• identify sources of psychological, social and spiritual support for people with life-limiting illnesses and their families
• recognise how your own values and beliefs about death and dying affect your personal responses and interactions with people with life-limiting illnesses and their families.

For further learning on communication go to the  PCC4U website – Module 2: Communicating with people with life-limiting illnesses .

This module will help you develop the knowledge and skills needed to identify the health needs of people with life-limiting illnesses. The resource will also help you develop your understanding of the principles for managing common clinical problems in palliative care.

• describe the epidemiological and clinical features along the illness trajectories of specific life- limiting illnesses
• explain the principles for assessing common symptoms and health problems associated with life-limiting illnesses
• explain the principles for management of common symptoms and health problems associated with life-limiting illnesses.

Watch the  case study here.

For further learning on assessment and intervention, go to the  PCC4U website – Module 3: Assessing and managing symptoms.

This module will help you develop your understanding of how to provide support for people with life-limiting illnesses and their families. In particular, it focuses on issues of loss, establishing goals of care, and understanding the effect of caregiving.

• recognise the different responses and emotions of people living with life-limiting illnesses and their families
• discuss strategies for facilitating collaborative decision-making on care goals with people with life-limiting illnesses and their families
• identify interventions that will optimise physical, psychological and social function for people with life-limiting illnesses and their families
• analyse the effect of caregiving on the family networks of people with life-limiting illnesses
• recognise how your own values and beliefs about death and dying affect your responses and interactions with people with life-limiting illnesses and their families.

Watch the  case study here.

For further learning on optimising function, visit the  PCC4U website – Module 4: Optimising function in palliative care .

Focus Topics Modules

This topic will provide an opportunity to develop knowledge and skills associated with providing culturally appropriate care for people with life-limiting conditions.

This focus topic is based on the core principles of palliative care and is designed to supplement the learning activities in Module 1: Principles of palliative care.

After completing this focus topic, you should be able to:

• understand the role of culture in contributing to individual’s experiences of living with a life- limiting condition
• apply principles of culturally centred care when caring for people with life-limiting conditions.

For further learning on culture-centred care, visit the  PCC4U website: Topic 4: Culture-centred care of people with life-limiting conditions .

This module will help you develop the knowledge and skills needed to provide quality care, across various health care settings, to Aboriginal people with life-limiting illnesses and their families.

This module is based on the core principles of palliative care and is designed to supplement the learning activities in Module 1: Principles of palliative care.

• Identify the practice principles of caring for Aboriginal people with life-limiting illnesses

For further learning on caring for Aboriginal people visit the  PCC4U website – Topic 2: Caring for Aboriginal people with life-limiting conditions .

This module will help you develop the knowledge and skills needed to provide care, across various health care settings, to children with life-limiting conditions and their families.

• discuss the key principles associated with caring for children with life-limiting conditions and their families
• describe the process of assessment and management of children with a life-limiting illness and their families, through an interdisciplinary approach to care
• identify strategies to facilitate coordination of care for children with a life-limiting condition, their families and their communities.

For further learning on caring for children, visit the  PCC4U website – Topic 3: Caring for children with life-limiting conditions .

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Institute for Palliative and End of Life Care

Improved understanding and utilization of palliative care will foster optimum quality of life – physical, psychosocial and spiritual - in the presence of serious illness and the final stages of life.

— Pierre Tielhard de Chardin

"We are not human beings on a spiritual journey. We are spiritual beings on a human journey."

Marquette College of Nursing’s Institute for Palliative and End of Life Care (IPEOLC) aims to change the status of palliative, serious illness, and end-of-life care and education.

The IPEOLC contributes to improvements in palliative and serious illness care through its education, research, clinical, interprofessional, and community activities. In accordance with the Jesuit educational principle, "Care for the Whole Person," the IPEOLC educates students, clinicians from multiple disciplines and the public about palliative care. It promotes research and quality initiatives and serves as a resource for information with the aim of further improving this vital area of care.

Palliative Care and Hospice

Palliative care is specialized care for individuals with serious illness that aims to relieve pain, stress, and other symptoms of the illness to improve quality of life for an individual and their family. Palliative care an extra layer of support provided best by a health care team of doctors, nurses, and other specialists who focus on the individual’s health care needs as well as their wishes and goals. Palliative care can be provided in many health care settings. It is appropriate for a person at any age or any stage in a serious illness, and can be provided along with curative-focused treatment.

Hospice care is care provided by an interdisciplinary team of doctors, nurses and other team members (including chaplain, volunteer, and bereavement services) for individuals with advanced, serious, terminal illness whose goals are for supportive care.  Its focus is on quality of life of the individual and their family. It addresses the individual’s physical, psychosocial, and spiritual needs. Hospice care can be provided in a variety of settings.

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This paper is in the following e-collection/theme issue:

Published on 8.4.2024 in Vol 12 (2024)

Effects of Telemedicine on Informal Caregivers of Patients in Palliative Care: Systematic Review and Meta-Analysis

Authors of this article:

• Xiaoyu Yang 1 , BSN ; 
• Xueting Li 2 , BSN ; 
• Shanshan Jiang 2 , BSN ; 
• Xinying Yu 3 , MSN

1 Department of Oncology, Shengjing Hospital of China Medical University, , Shenyang, , China

2 College of Nursing, China Medical University, , Shenyang, , China

3 Department of Pediatrics, Shengjing Hospital of China Medical University, , Shenyang, , China

Corresponding Author:

Xinying Yu, MSN

Background: Telemedicine technology is a rapidly developing field that shows immense potential for improving medical services. In palliative care, informal caregivers assume the primary responsibility in patient care and often face challenges such as increased physical and mental stress and declining health. In such cases, telemedicine interventions can provide support and improve their health outcomes. However, research findings regarding the use of telemedicine among informal caregivers are controversial, and the efficacy of telemedicine remains unclear.

Objective: This study aimed to evaluate the impacts of telemedicine on the burden, anxiety, depression, and quality of life of informal caregivers of patients in palliative care.

Methods: A systematic literature search was conducted using the PubMed, Embase, Web of Science, CENTRAL, PsycINFO, CINAHL Plus with Full Text, CBM, CNKI, WanFang, and VIP databases to identify relevant randomized controlled trials published from inception to March 2023. Two authors independently screened the studies and extracted the relevant information. The methodological quality of the included studies was assessed using the Cochrane risk-of-bias tool. Intervention effects were estimated and sensitivity analysis was conducted using Review Manager 5.4, whereas 95% prediction intervals (PIs) were calculated using R (version 4.3.2) and RStudio.

Results: A total of 9 randomized controlled trials were included in this study. The meta-analysis indicated that telemedicine has reduced the caregiving burden (standardized mean differences [SMD] −0.49, 95% CI −0.72 to −0.27; P <.001; 95% PI −0.86 to −0.13) and anxiety (SMD −0.23, 95% CI −0.40 to −0.06; P =.009; 95% PI −0.98 to 0.39) of informal caregivers; however, it did not affect depression (SMD −0.21, 95% CI −0.47 to 0.05; P =.11; 95% PI −0.94 to 0.51) or quality of life (SMD 0.35, 95% CI −0.20 to 0.89; P =.21; 95% PI −2.15 to 2.85).

Conclusions: Although telemedicine can alleviate the caregiving burden and anxiety of informal caregivers, it does not significantly reduce depression or improve their quality of life. Further high-quality, large-sample studies are needed to validate the effects of telemedicine. Furthermore, personalized intervention programs based on theoretical foundations are required to support caregivers.

Trial Registration: PROSPERO CRD42023415688; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=415688

Introduction

With the continued increase in the number of individuals with multiple and severe diseases, the global demand for palliative care services is also growing [ 1 ]. Given that most patients who require palliative care prefer to spend time at home and receive the necessary care [ 2 - 4 ], informal caregivers play a crucial role in caring for patients. However, the cumbersome and complex care tasks may have negative impacts on their physical, psychological, and social well-being [ 5 - 7 ]. In recent years, telemedicine, as an emerging technology, has been increasingly used in home care [ 2 ], benefiting informal caregivers [ 8 , 9 ]. It may serve as a pathway to support informal caregivers of patients in palliative care, improve their health outcomes, and thus enhance the quality of palliative care [ 10 ].

The World Health Organization estimates that 56.8 million people require palliative care yearly [ 11 ]. However, there is a prevailing shortage of professional palliative care personnel, and the majority of patients prefer to receive such care at home [ 2 - 4 ]. Hence, informal caregivers, usually family members or friends, assume the primary responsibility for patient care. In doing so, they adapt to changes in their role, family, and social life to provide long-term, unpaid care for patients [ 12 , 13 ]. Informal caregivers frequently lack professional training [ 4 ]. Thus, they face unmet supportive care needs, such as symptom management, psychological counseling, and social support [ 4 , 13 ], and experience anxiety, depression, physical overload, and a decline in the quality of life (QOL) [ 5 - 7 ]. Studies reveal that the state of informal caregivers and the condition of the patients mutually affect each other. The quality of care provided by caregivers in poor condition can be diminished, exacerbating the patient’s condition. In turn, the patient’s worsening condition can negatively affect informal caregivers [ 7 , 14 , 15 ]. Therefore, the demand to assist informal caregivers and address their physiological, psychological, and social health needs is urgent.

With the development of the information age, telemedicine has demonstrated tremendous potential in providing health care. Telemedicine refers to the use of information and communication technologies to facilitate communication between patients and health care workers for the assessment, diagnosis, treatment, and prevention of diseases, thereby improving patient health [ 16 ]. As a personalized medical approach, telemedicine overcomes the conventional care constraints of time and space; facilitates remote treatment, supervision, education, and care services; and promotes the rational distribution and refinement of medical resources [ 17 ]. Telemedicine has been widely applied in medical fields such as diabetes, chronic wounds, and cardiovascular diseases [ 18 , 19 ], benefiting patients and improving the health outcomes of informal caregivers [ 8 , 9 ].

In recent years, telemedicine has also provided novel ideas to guide palliative care [ 20 ]. In the field of palliative care, an increasing number of informal caregivers are opting to provide home care for patients who require palliative care [ 21 ]. Telemedicine facilitates real-time communication between professionals and family caregivers. This promotes information sharing; assists in the patient’s symptom management; and helps in providing health education, psychological counseling, and social support [ 22 ]. However, the outcomes of using telemedicine with informal caregivers are controversial. For example, a randomized controlled trial (RCT) by Chen et al [ 23 ] indicated that telemedicine could alleviate caregiving burden and enhance the QOL of informal caregivers. However, Dionne-Odom et al [ 24 ] found no significant difference between the telemedicine and control groups in terms of improvements in informal caregivers’ QOL, burden, or emotional state. Of the few available systematic reviews, most provide a descriptive summary of results without performing a meta-analysis to quantify the outcomes of the studies [ 25 - 27 ]. Thus, the intervention effects of telemedicine remain unclear.

Given the limitations of previous reviews, we conducted a systematic review and meta-analysis. We summarized articles on the intervention effects of telemedicine among the informal caregivers of patients in palliative care, focusing on 4 health outcomes: caregiver burden, anxiety, depression, and QOL. This provides a reference for the clinical practice of telemedicine. This is the first systematic review and meta-analysis to verify the effects of telemedicine on the outcomes for informal caregivers of patients in palliative care.

This systematic review adhered to the guidelines in the 2020 PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) checklist [ 28 ] ( Checklist 1 ). In addition, it was registered on PROSPERO (CRD42023415688).

Ethical Considerations

As all data used were obtained from previously published articles, this research did not require ethical approval from an institutional review board or informed consent from participants.

Search Strategy

A literature search was conducted in 10 electronic databases (PubMed, Embase, Web of Science, CENTRAL, PsycINFO, CINAHL Plus with Full Text, CBM, CNKI, WanFang, and VIP) for publications dating from the establishment of each database until March 31, 2023. Following the Population, Intervention, Comparison, Outcome, and Study design principles, the searches in this systematic review were performed using Medical Subject Headings, the title or abstract, and keywords, as well as Boolean logical operations. Multimedia Appendix 1 describes the search strategy for all databases. In addition, relevant systematic reviews and references were manually screened to identify additional eligible studies.

Study Eligibility Criteria

The inclusion criteria were as follows. (1) The study population was informal adult caregivers (aged ≥18 y) caring for patients receiving palliative care for severe diseases (eg, advanced stage, incurable “stage 4” diseases). (2) Intervention measures were being provided through the internet, applications, telephone, video, or other telemedicine technologies. (3) The control group received usual care or enhanced usual care or was on a waiting list. (4) The study reported outcomes for informal caregivers focusing on 1 or more of the following aspects: caregiver burden, anxiety, depression, or QOL. (5) The study was designed as an RCT. (6) The article was published in English or Chinese.

The exclusion criteria were as follows. (1) The publications were qualitative research, conference abstracts, letters, comments, reviews, or protocols. (2) Patients were underage (aged <18 y), or palliative care indications were unrelated to life-limiting diseases (eg, chronic diseases or nonmalignant pain). (3) Interventions were not being targeted at informal caregivers. (4) The full-text article or relevant data were not accessible.

Study Selection and Data Extraction

The titles and abstracts of the retrieved literature were first downloaded and imported into Endnote X9 (Clarivate; a reference management program) to remove duplicates. Two evaluators then independently screened the studies based on the inclusion and exclusion criteria. Any disagreements were resolved through consultation or discussion with a third researcher. Data were extracted through a predesigned table, including the name of the first author, year of publication, country, age of the caregiver, sample size, type of disease diagnosed in the patient, type and content of intervention measures, study duration, and time of the outcome assessment.

Quality Assessment

Two evaluators independently assessed the methodological quality of the included studies using the Cochrane Collaboration’s tool for assessing the risk of bias [ 29 ]. Seven aspects were evaluated: (1) random sequence generation, (2) allocation concealment, (3) blinding of participants and personnel, (4) blinding of outcome assessment, (5) incomplete outcome data, (6) selective reporting, and (7) other biases. Each study was categorized as “low risk,” “uncertain risk,” or “high risk,” with disagreements resolved through consultation or discussion with a third researcher.

Data Analysis

For studies with multiple measurements, only data from the last measurement were extracted for analysis. SDs were calculated according to the Cochrane Handbook for Systematic Reviews of Interventions if not reported [ 29 ]. If required data were not reported, we contacted the first authors of the relevant publication. Heterogeneity testing and the meta-analysis were conducted using Review Manager 5.4 (The Cochrane Collaboration). Intervention effects were estimated through standardized mean differences (SMDs) and 95% CIs, and forest plots were generated. A 2-sided P value <.05 was considered statistically significant. Heterogeneity was evaluated using the χ 2 test (with P <.10 indicating heterogeneity) and I 2 test (with I 2 >50% indicating moderate heterogeneity and I 2 >75% indicating high heterogeneity). If I 2 ≤50% and P >.10, a fixed-effect model was adopted for data merging and analysis; otherwise, a random-effects model was used. A sensitivity analysis was conducted using a one-study-out method to evaluate the robustness of the combined results. In addition, 95% prediction intervals (PIs) were calculated using R (version 4.3.2; R Foundation for Statistical Computing) and RStudio (Posit) to explain the heterogeneity across studies and estimate the true effects in similar future studies [ 30 ].

Search Results and Selection

A preliminary search of the electronic databases yielded 5456 articles: 254 in Chinese and 5202 in English. After removing 1733 duplicated articles, an additional 3669 unrelated articles were excluded after evaluating their titles and abstracts, leaving 54 articles for the full-text review. From these, 8 articles were included, and with the addition of 1 more article, 9 studies were ultimately included in the meta-analysis. The screening process is detailed in Figure 1 [ 28 ].

Characteristics of the Included Studies

Study characteristics.

Multimedia Appendix 2 [ 23 , 24 , 31 - 37 ] summarizes the main characteristics of the included studies. These studies were all RCTs published in 3 countries between 2015 and 2023: a total of 6 from the United States, 1 from the Netherlands, and 2 from China. Four studies mentioned the theoretical or conceptual framework of the intervention, including Erikson’s psychosocial development theory and Bowen’s family system theory [ 23 ], self-determination theory [ 31 ], shared decision-making [ 33 ], and cognitive behavioral stress management [ 35 ].

Characteristics of Informal Caregivers

The studies involved 1215 informal caregivers, with the number of participants in each study ranging from 35 to 334. The average age of the informal caregivers ranged from 45.71 (SD 11.85) to 60.1 (SD 12.5) years, and they were predominantly patients’ parents, spouses or partners, and children. The types of diseases of the patient included advanced cancer, advanced heart failure, and advanced dementia.

Characteristics of Telemedicine Interventions

Telemedicine was practiced via websites, web conferences, applications, or the telephone, but primarily through websites and the telephone. A total of 4 studies provided interventions through a website. Oliver et al [ 33 ] performed a 3-arm clinical trial, where 1 group received an intervention via Facebook, which offered education and social support to informal caregivers, whereas a separate group received the ACCESS intervention. Here, in addition to the Facebook-based intervention, web conferences were incorporated to facilitate the engagement of informal caregivers in joint decision-making in palliative care. The project aimed to alleviate informal family caregivers’ anxiety and depression. Pensak et al [ 35 ] implemented a 12-week intervention named Pep-Pal, which provided stress management support to informal caregivers of patients with advanced cancer via a website. The intervention program of Parker Oliver et al [ 34 ], ACTIVE, used web conferences or telephone calls to link informal caregivers to end-of-life care teams to improve caregivers’ perceptions of pain management. Similarly, Fu et al [ 37 ] established real-time communication between medical staff and family caregivers of patients with advanced cancer via an internet platform to provide relevant health guidance. Furthermore, 2 studies provided intervention through an application. Schuit et al [ 36 ] developed a program called Oncokompas to provide personalized information, suggestions, and supportive care solutions tailored to the caregiver’s situation. Chen et al [ 23 ] created a dyadic life review program for patients with advanced cancer and their caregivers using WeChat software to promote their QOL. In addition, 3 studies offered interventions via the telephone. Dionne-Odom et al [ 24 ] implemented a telephone intervention program named ENABLE CHF-PC, which offered psychological and problem-solving support for patients with heart failure in palliative care and their caregivers to improve their emotions, burden, and QOL. Two years later, Dionne-Odom et al [ 32 ] performed a similar intervention for patients with advanced cancer and their caregivers. Finally, Badr et al [ 31 ] provided a telephonic psychosocial intervention to enhance the QOL of patients with advanced cancer and their caregivers.

Characteristics of Controls

The control group in 1 study received enhanced usual care [ 33 ], whereas those in the remaining studies received usual care. Furthermore, in the study by Schuit et al [ 36 ], informal caregivers in the control group were allowed to use telemedicine equipment after the research ended.

Risk of Bias

A quality assessment of the included studies was conducted using the Cochrane risk-of-bias tool. Although most studies (6/9, 67%) reported using randomization, some did not detail allocation concealment, potentially leading to selection bias. Only 2 studies were determined as having a low risk of implementation bias owing to the challenge of blinding researchers and participants in telemedicine intervention trials [ 24 , 32 ]. Approximately half (4/9, 45%) the studies blinded the outcome assessors, and thus, their risk of measurement bias was classified as low. Three studies were determined to have a high risk of attrition bias due to elevated loss to follow-up rates or a lack of appropriate data processing methods [ 32 , 35 , 37 ]. However, no selective reporting bias was detected in the included studies. Four studies were categorized as having a high risk of other biases due to baseline differences [ 24 , 34 ] and small sample sizes [ 31 , 32 ]. The results are shown in Figure 2 .

Meta-Analysis

Caregiver burden.

A total of 5 studies that evaluated caregiver burden were included in the meta-analysis [ 23 , 31 , 35 - 37 ]. Since no significant heterogeneity was observed among the included studies ( I 2 =0%; P =.64), a fixed-effect model was used for merging the data. The results revealed that telemedicine intervention could mitigate the burden on informal caregivers (SMD −0.49, 95% CI −0.72 to −0.27; P <.001; 95% PI −0.86 to −0.13), as shown in Figure 3A . The sensitivity analysis showed that the results were stable, as shown in Figure 4A . The results remained unchanged when studies were merged using a random-effects model.

A total of 5 studies assessed the anxiety level of informal caregivers [ 24 , 31 , 32 , 34 , 35 ]. Due to mild heterogeneity among the included studies ( I 2 =43%; P =.14), a fixed-effect model was adopted to pool the data for analysis. The results demonstrated that telemedicine intervention could reduce informal caregivers’ level of anxiety (SMD −0.23, 95% CI −0.40 to −0.06; P =.009; 95% PI −0.98 to 0.39), as shown in Figure 3B . The sensitivity analysis showed that after excluding Badr et al [ 31 ], the pooled results were the opposite, with I 2 decreasing to 0%, as shown in Figure 4B . This could be attributed to a higher risk of bias in this study. However, when merging studies using a random-effects model, the results still retained statistical significance (SMD −0.30, 95% CI −0.57 to −0.03; P =.03).

A total of 5 studies assessed the depression level of informal caregivers [ 24 , 31 - 33 , 35 ]. In the study by Oliver et al [ 33 ], “a” represents the ACCESS intervention and “b” represents the Facebook intervention. Due to moderate heterogeneity among the included studies ( I 2 =51%; P =.07), a random-effects model was used for merging the data. The analysis indicated that the telemedicine intervention did not result in a statistically significant difference in reducing depression among informal caregivers (SMD −0.21, 95% CI −0.47 to 0.05; P =.11; 95% PI −0.94 to 0.51), as shown in Figure 3C . Furthermore, the sensitivity analysis showed that no individual trial could change the results. However, after excluding Badr et al [ 31 ], the I 2 decreased to 0%, as shown in Figure 4C .

QOL of Caregivers

A total of 4 studies that assessed QOL were included in the meta-analysis [ 23 , 24 , 32 , 36 ]. Due to moderate heterogeneity among the studies ( I 2 =73%; P =.01), a random-effects model was used. The results indicated that the telemedicine intervention did not result in a statistically significant difference in improving the overall QOL of informal caregivers (SMD 0.35, 95% CI −0.20 to 0.89; P =.21; 95% PI −2.15 to 2.85), as shown in Figure 3D . Furthermore, the sensitivity analysis indicated that no individual trial could change the results. However, after excluding Chen et al [ 23 ], the I 2 decreased to 0%, as shown in Figure 4D .

Principal Findings

The results of this review indicate that compared to conventional care, telemedicine interventions can alleviate the caregiving burden and anxiety of informal caregivers; however, they do not significantly alleviate depression or improve their QOL. The 95% PIs indicate considerable heterogeneity among the studies, and the effects of future telemedicine interventions on these outcomes remain uncertain, except for reducing caregiver burden.

The results of the study demonstrated that telemedicine interventions could relieve the caregiving burden of informal caregivers, which is consistent with previous research [ 9 , 12 , 31 ]. The systematic review by Hu et al [ 9 ] demonstrates that internet-based interventions can effectively alleviate the stress of informal caregivers of patients with chronic diseases and improve their well-being. Chih et al [ 38 ] developed the Comprehensive Health Enhancement Support System for informal caregivers of patients with advanced cancer. The tool reduced the negative emotions of family caregivers and subsequently decreased their caregiving burden. Caregiver burden consists of both subjective and objective levels. Subjective burden includes the perceived physical, emotional, social, and economic difficulties caused by caring for individuals with serious diseases, whereas objective burden refers to the time and number of tasks devoted to patient care [ 39 ]. Telemedicine facilitates health education, assists in decision-making, helps develop problem-solving skills, and provides social support. It also improves and conserves the resources and time of informal caregivers. Thus, it is conducive to alleviating the caregiving burden at both the subjective and objective levels.

The results revealed that telemedicine interventions can alleviate anxiety in informal caregivers, which is consistent with the findings of previous research [ 8 , 27 ]. Research indicates that the likelihood of anxiety occurring in caregivers of patients with advanced cancer is 3 times that of the general population [ 40 ]. Here, factors such as overwhelming nursing pressure, inadequate self-care, and the lack of supportive care can lead to anxiety [ 41 , 42 ]. Currently, the proposed interventions to reduce the anxiety of informal caregivers focus on psychological education, skill training, and treatment counseling [ 43 ]. In this case, telemedicine enables monitoring, assessing, and managing patient symptoms, which can enhance informal caregivers’ symptom management skills [ 1 , 37 ]. Moreover, it allows them to join discussions on the disease and participate in clinical decisions [ 20 , 33 , 44 ]. This can help satisfy informal caregivers’ information needs and enhance their caregiving confidence and ability. In addition, telemedicine can provide psychological interventions, improve interpersonal relationships, and offer training in stress management skills [ 31 , 32 ], thereby alleviating symptoms of anxiety. However, the sensitivity analysis indicated that the result was unstable. To ensure greater stability, it will be necessary to gather additional data for further investigation.

The results of our research indicate that telemedicine does not have a statistically significant effect on alleviating depression among caregivers, which is consistent with the findings of previous research [ 45 ]. In addition to influencing factors such as the high nursing stress and insufficient social support observed for anxiety, an increased economic burden may also contribute to the onset of depression [ 42 , 46 ]. Despite its potential advantages, telemedicine requires a stable internet connection and available electronic devices. The initial investment cost of such equipment may negatively affect informal caregivers [ 47 ]. Furthermore, researchers only offered counseling on disease knowledge and mental and emotional well-being, but not economic and welfare support. Subsequently, factors including a lower baseline depression level in the study population [ 24 ], small sample size, and significant differences in intervention measures in various studies may negatively impact the combined results. These findings differ from those of Northouse et al [ 48 ], possibly due to variations in the target population. The study by Northouse et al [ 48 ] focused on informal caregivers of patients with cancer. In contrast, our research noted higher loss to follow-up rates in the population with advanced diseases, potentially impeding the discovery of beneficial outcomes. Moreover, Northouse et al [ 48 ] conducted a self-controlled study, whereas we included RCTs in which conventional palliative care can alleviate depression in informal caregivers [ 46 ]. Consequently, the extent to which telemedicine can improve depression is limited.

Quality of Life

This study found that telemedicine does not significantly improve the QOL of informal caregivers of patients in palliative care, which is consistent with the findings of earlier research [ 25 , 49 ]. Most informal caregivers consistently place the needs of patients above their own [ 50 ], leading to various unmet supportive care needs, such as physical, psychological, and social needs [ 6 , 51 ], and a subsequent decline in QOL. As QOL is a multidimensional construct, a multidisciplinary intervention is often more effective than single-faceted approaches. However, the majority of studies (3/4, 75%) in this review targeted interventions at the social-psychological level, and the results might not be ideal. Furthermore, the small sample sizes in the included studies and variations in intervention measures may have limited the possibility of revealing meaningful results. Finally, the effectiveness of intervention measures may further be moderated by other factors such as the characteristics of informal caregivers, preexisting mental health issues, and the caregiver-patient relationship. Therefore, future efforts should aim to devise personalized interventions for specific informal caregiver populations to ensure the best possible support.

Strengths and Limitations

This study meticulously adhered to the systematic review writing process, developed a comprehensive search strategy, and selected appropriate methods for meta-analysis. To enhance the reliability of the results, only RCT studies were included. However, this review also had limitations. First, we only included available data for the analysis. Missing data may impact the combined results of the meta-analysis. Second, some included studies, especially pilot studies, have small sample sizes, which requires a cautious approach to generalizing the results. Third, the inclusion of only English- and Chinese-language articles may lead to publication bias. Last, the included studies all measured the results immediately after intervention, without evaluating the persistence of the intervention effect. Therefore, in the future, large samples and high-quality research are required to further validate the intervention effects of telemedicine and explore the most suitable intervention duration for informal caregivers.

Implications for Practice and Future Research

The findings indicated that telemedicine interventions have beneficial effects on the informal caregivers of patients in palliative care. We recommend that professional palliative care personnel consider the needs of informal caregivers, incorporating telemedicine into care plans to optimize and complement existing health care measures. When implementing such interventions, several considerations arise. First, the needs of informal caregivers are diverse and require multidisciplinary team collaboration. Second, personalized interventions should be tailored based on the demographic characteristics of informal caregivers. Finally, cost-effectiveness should be considered. In this regard, we suggest that relevant organizations establish regulations to minimize health care costs as much as possible.

Moreover, a theoretical or conceptual framework can provide the foundation of interventions, drive their development, and facilitate the prediction and explanation of their mechanism to achieve the desired effect [ 22 ]. For example, in the included studies, Badr et al [ 31 ] conducted a study based on self-determination theory. The authors hypothesized that telephone-based psychosocial interventions could improve the mental state and burden of patients and informal caregivers. Those results were statistically significant. The study by Pensak et al [ 35 ] was based on cognitive behavioral stress management theory and provided stress management training to alleviate informal caregivers’ burden. In contrast, studies lacking theoretical support failed to improve patient and informal caregiver outcomes. Therefore, it is recommended that researchers have a relevant theoretical foundation when devising intervention measures to enhance the intervention effect, which will be more likely to benefit informal caregivers.

In summary, telemedicine can alleviate caregiving burden and anxiety in informal caregivers but does not significantly impact their depression and QOL. Despite certain outcomes lacking statistical significance, they retain clinical relevance for those engaged in family palliative care. We believe that support provided through telemedicine represents a viable means to ensure the continuity of care, address the needs of informal caregivers, and foster favorable outcomes. Future studies that involve large samples and high-quality research are still required to further validate the effects of telemedicine. Furthermore, intervention measures should be designed with a solid theoretical basis to the fullest extent.

Acknowledgments

This study was supported by the scientific research project of the Chinese Nursing Association (ZHKY202101). The funder had no role in the study design, data extraction process, data analysis, results interpretation, or manuscript preparation.

Authors' Contributions

X Yang and X Yu were responsible for the topic and design of this review. X Yu obtained funding, and X Yang drafted the manuscript. X Yang, XL, and SJ performed the study selection and data extraction. X Yu supervised the project. All authors were responsible for the analysis and interpretation. All authors reviewed and approved the final manuscript.

Conflicts of Interest

None declared.

Search strategy.

Characteristics of the included studies.

PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) checklist.

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Abbreviations

Edited by Lorraine Buis; submitted 03.11.23; peer-reviewed by Carlos Laranjeira, Shumenghui Zhai; final revised version received 28.02.24; accepted 28.02.24; published 08.04.24.

© Xiaoyu Yang, Xueting Li, Shanshan Jiang, Xinying Yu. Originally published in JMIR mHealth and uHealth (https://mhealth.jmir.org), 8.4.2024.

This is an open-access article distributed under the terms of the Creative Commons Attribution License ( https://creativecommons.org/licenses/by/4.0/ ), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR mHealth and uHealth, is properly cited. The complete bibliographic information, a link to the original publication on https://mhealth.jmir.org/ , as well as this copyright and license information must be included.

A tipple and a chat — meet Colin Apelt, the 92yo volunteer delivering drinks and companionship to those in palliative care

Many people aged in their 90s are slowing down – but not Colin Apelt.

The 92-year-old has been volunteering at St Vincent's Private Hospital in Brisbane for more than two decades, delivering drinks and companionship to people in the final stages of their lives.

Check out the full video (you can watch with or without sound).

Filming and editing: Curtis Rodda, Arruna Lawrie and Joanne Hilditch

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