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Abstract

French

Background:

Individuals with advanced chronic kidney disease benefit from an integrated palliative approach to care through timely advance care planning and discussions about their goals of care. Despite literature and guidelines emphasizing the need for advance care planning in chronic kidney disease management, treatment-focused approach remains the norm, partly due to provider reluctance and discomfort in engaging in advance care planning conversations. In British Columbia (BC), the Integrated Palliative Nephrology (IPN) project was launched to enhance kidney health care provider engagement in advance care planning and goals of care discussions, to train kidney health care providers in the province to initiate serious illness conversations, and to develop standardized resources for patients and providers across a provincial renal network.

Objective:

As part of the quality improvement, this study highlights the barriers/challenges and enablers to engage in advance care planning for health care providers of adult patients with chronic kidney disease.

Design:

A multi-methods approach was used.

Setting:

British Columbia, Canada

Participants:

Kidney health care providers who worked in nondialysis and dialysis care settings

Methods:

Data were collected through semistructured surveys, individual interviews, and focus groups with health care providers across the province who care for patients with chronic kidney disease.

Results:

The results of a kidney health care provider survey (n = 90) showed self-reported improvements in knowledge of the integrated palliative approach and competency and comfort engaging in advance care planning discussions. The results of one-on-one interviews (n = 15) and focus groups (n = 32) with kidney health care providers showed that taking a relational approach with patients, enhancing provider comfort and competency with advance care planning, clarifying roles and responsibilities around who should engage in advance care planning conversation was beneficial to patient care. Supporting cohesion among care teams around the goal of advancing an integrated palliative approach, and offering mentorship and targeted education and resources for the kidney care team, can enable effective advance care planning discussions.

Limitations:

The study was limited by purposive sampling, a small sample size, and potential bias due to participant interests and settings.

Conclusions:

For kidney health care providers, targeted education and resources, clarity around roles and responsibilities, and long-term relationships with patients may help advance the cultural shift from treatment focus to integrating palliative care across the continuum of the illness journey.

Trial registration:

Not registered.

Keywords

advance care planning palliative care palliative approach serious illness conversation advanced chronic kidney disease

Introduction

Much of clinical practice for advanced chronic kidney disease (CKD) has emphasized treatment and disease management, with a focus on dialysis and transplantation. However, individuals with advanced CKD need an integrated palliative approach to care which holistically addresses what matters most to them and helps to enhance their quality of life.^1,2 This includes timely advance care planning (ACP), discussions about their goals of care, and a palliative approach throughout the continuum of their illness journey. Patients and their families have consistently expressed a preference to discuss ACP with health care providers,^3-6 but these conversations rarely occur,^7,8 despite guidelines emphasizing the need for ACP in dialysis and CKD management.^9,10

Moving from a treatment-focused approach to an integrated palliative approach to CKD management requires a shift in practice and culture. Provider reluctance and discomfort have been identified as common barriers to integrating ACP,^11-13 which has prompted the need for education and skills-building. Beyond understanding clinician motivation at the individual level, Holley and Davison note the importance of understanding health care structures and processes for implementing ACP programs,¹⁴ and Paladino et al¹¹ have highlighted the role of organizational context and implementation strategies. Therefore, a shift in practice and culture to integrate ACP and palliative care in advanced CKD management and dialysis requires a multi-level understanding and effort.

The goals of the Integrated Palliative Nephrology (IPN) project in the province of British Columbia (B.C.), Canada were to enhance provider engagement in ACP and goals of care discussions, to train kidney health care providers to initiate serious illness conversations (SIC), and to develop standardized resources for patients and providers. The IPN project was part of a larger initiative that began in 2004 to shift toward integrating a palliative approach to advanced CKD care in B.C.¹⁵ In 2018, BC Renal conducted an environmental scan that revealed significant gaps in palliative care within the provincial kidney care network. Findings from the environmental scan informed the development of the IPN project carried out from 2018 to 2022. The key components of this project were building capacity to enhance provider engagement in ACP and goals of care discussions with patients; training health care providers to initiate SIC; and developing a variety of standardized patient and provider resources. The project emphasized on capacity building, fostering cultural change, sharing knowledge, and developing resources to support the integration of palliative care within advanced CKD management.

In August 2022, a project evaluation was completed to assess effectiveness by gaining an understanding about the experiences of patients and care team members, and to gather suggestions for future actions and recommendations. This article reports on the barriers and enablers identified in the evaluation, as reported by kidney health care providers, to engaging in ACP with individuals with advanced CKD.

Methods

A multi-methods approach was used. Data were collected through semistructured surveys, individual interviews, and focus groups with kidney health care providers across the province who care for patients with chronic kidney disease to promote equity and participation.

A web-based semistructured survey was adapted from Weissman et al¹⁶ (Supplemental material 1) It included questions regarding clinician comfort level with palliative care conversations, knowledge, and skills. kidney health care providers were asked to rank their knowledge, ability, and comfort level on various components of the palliative approach to kidney care using 5-point Likert scales. An invitation with survey link was emailed to kidney health care team members across the province. The survey was live from November 2021 to December 2021. A total of 90 fully completed survey responses were collected from five Health Authority Renal Programs in BC. The results were analyzed using descriptive statistics.

A semistructured interview guide was adapted from Heyland et al¹⁷ and used for the interviews and focus groups (Supplemental material 2). The 30-minute interviews were conducted via videoconferencing or phone by YR and SW. A purposive sampling method was used to ensure each region and treatment modality was represented. Individual interviews were conducted with 15 clinicians, including social workers, nephrologists, pharmacists, nurses, and dietitians, with representation from the five regional health authorities across diverse geographical settings.

The 30-minute focus groups were conducted via videoconferencing with provincial committees or community of practice groups consisting of providers who work broadly in kidney care or the home dialysis modality setting, with GH or SS facilitating the discussion. Convenience sampling was used for interviews and focus groups utilizing the established groups in the provincial network. The interviews and focus groups were conducted from December 2021 to March 2022.

The data from interviews and focus groups were categorized using NVivo qualitative data analysis software (QSR International, Burlington, Massachusetts). Thematic analyses methods were applied by YR.^18,19 We utilized the Consolidated Framework for Implementation Research (CFIR)^20-22 to inform the structure of this analysis at the level of the health system and culture, organization, and individuals with CKD and health care providers (see Figure 1).

Figure 1.

Consolidated framework for Implementation research (CFIR) domains adapted to levels of analysis.

Results

Ninety survey responses were collected. Individual interviews were conducted with 15 clinicians, including social workers, nephrologists, pharmacists, nurses, and dietitians, with representation from the 5 regional health authorities across diverse geographical settings (eg, rural and remote, urban). Three focus groups were conducted with a total of 32 providers from the provincial Peritoneal Dialysis Nurses Group, the Home Hemodialysis Educators, and the Palliative Care Committee coordinated by BC Renal. See Table 1 for demographic details of all participants.

Table 1.

Demographic Details of Interview, Focus Group, and Survey Participants.

	Interviews(n = 15)	Focus groups(n = 32)	Survey(n = 90)
Professional
Nurse	2	17	42
Nephrologist	4	5	10
Social Worker	5	1	14
Dietitian	1	0	12
Pharmacist	3	2	6
Other^a	0	7	6
Kidney Care Settings
Kidney Care (Nondialysis)	1	0	N/A^b
Facility-Based Hemodialysis	4	5	N/A^b
Home Hemodialysis	2	13	N/A^b
Peritoneal Dialysis	3	6	N/A^b
Other^c	5	8	N/A^b

Includes nonclinical personnel, such as renal managers, data coordinators/statisticians, care aids, and clerical technicians.

Information not collected.

Includes nonclinical settings, such as administration and data coordination.

Health Care Provider Survey

Approximately 60% of providers “agreed” or “strongly agreed” that their knowledge about the palliative approach to care had increased over the duration of the IPN project. Almost half (48%) “agreed” or “strongly agreed” that their ability to have ACP discussions with their patients and family members had improved.

Most providers reported feeling “very comfortable” or “somewhat comfortable” discussing bad news (53.3%) and a shift in treatment approach from intensive care to conservative care (60.0%). When the level of comfort was analyzed by clinician type (see Figures 2 and 3), pharmacists and dietitians reported greater discomfort giving bad news, while nephrologists, social workers, and nurses reported greater comfort.

Figure 2.

Kidney health care provider survey results: comfort level giving bad news to an individual or family member (percentage of providers by role).

Figure 3.

Kidney health care provider survey results: comfort level discussing a shift in treatment approach from intensive care (including renal replacement therapy) to conservative care (percentage of providers by role).

Health Care Provider Interviews and Focus Groups

Tables 2 and 3 summarize the themes, along with transcript excerpts, regarding the barriers and challenges to, and enablers of, engaging in the palliative approach and discussions about ACP that emerged from the individual interviews and focus groups.

Table 2.

Themes and Interview Excerpts: Barriers and Challenges.

Theme	Excerpt	Profession	Work setting
Health system and cultural level
Tension between care driven by disease-specific therapies and palliative care	I think a lot of times our system’s set up that it’s an either or, like you’re on dialysis or you’re palliating.	Social Worker	Kidney care (nondialysis)
	I think we’re relatively good as a community not starting dialysis sometimes when they’re not suitable for it, but when our patients are on dialysis and then get older and older and older, we’re not very good at stopping dialysis. It’s very hard actually.	Nephrologist	Home HD and PD
Virtual care limitation	I would say, with the pandemic and the fact that we did a lot of consults and visits by Zoom and by phone, definitely took away some opportunities to discuss about goals of care.	Nephrologist	Home HD and PD
Virtual care limitation	Of course, it’s a hard conversation. And when you’re doing it over the phone, it’s much more difficult.	Nurse	PD
Organizational Level
Delayed ACP discussions	We’re taking care of very sick people and I feel like a lot of patients come in and have never heard of the goals of care discussion before . . . because once you’re on hemodialysis, you will be at risk of cardiac problems and all these complications. So, I do feel like goals of care should be discussed way before.	Nephrologist	Home HD and PD
Delayed ACP discussions	If you were to ask me, what would I do differently? I would make sure that the kidney clinics are starting advance care planning much earlier	Social Worker	Facility-based HD
Lack of clarity around roles and ownership of ACP discussions in care teams	When someone talked about prognosis or talked about how long they have, they immediately go for social worker.	Social Worker	PD
	I feel like the nephrologist kind of takes the brunt of having that difficult conversation.	Pharmacist	All
	I don’t find that it’s one specific person’s role. It’s a joint effort with really everyone from the allied health team as well.	Nephrologist	Home HD and PD
	That’s information that typically I might not have. I might not feel it is my place to tell a person . . . personally, I don’t feel like that should come from me as a social worker. (regarding prognosis and illness trajectory)	Social Worker	Kidney care (nondialysis)
	We can bring our concerns [about how dialysis affects a person’s quality of life] to the nephrologist but, I find at the end of the day, all we can really do is bring our concern to the nephrologist and beyond that, we don’t really have a lot of say.	Nurse	Facility-based HD
Provider level
Provider discomfort	I’m always a bit nervous. I think if you’re not nervous to have that conversation with somebody you’re losing a bit of empathy. I think you need to feel a little bit of distress when you’re going to have that conversation with someone.	Social Worker	Facility-based HD
Provider discomfort	I don’t mind having the conversations, but sometimes I find myself wondering if I’m giving the right information.	Nurse	PD
Disagreement with patient choices	Sometimes you think, I do not agree with them, with what they are choosing. I have to remember that just because they did not change their mind, it does not mean it was a bad conversation. Just because my agenda was not met does not mean that [the conversation] was not valuable.	Social Worker	Facility-based HD
Disagreement with patient choices	Different physicians have different attitudes about end of life . . . And that might be cultural too, from their perspective. Then I probably have a lot of my own and I don’t recognize, so I need to be confronted with that at times, too.	Nurse	Home HD
Lack of established relationship with the individual	If you don’t really know the patient or you’re meeting patients for the first time, it’s a bit strange to start asking them about the goals of care. So, I think if it is someone you’re seeing regularly, I think those are the people that should be having this discussion. People that have a relationship with the family.	Nephrologist	PD
Provider burnout	There are these other social determinants of health that, you know, the basic needs, transportation, food, housing that our social workers really get entrenched in these issues and that are very time and energy consuming.	Nephrologist	PD
Patient level
Lack of readiness to discuss ACP	To be honest with you, it’s extremely overwhelming for the patient to hear all this [ACP]. It’s way too much information and they’re not going to remember any of it. You really only take in the first little bit of a conversation and if you give them everything all at once, it also sours your rapport and relationship with that person.	Social Worker	Facility-based HD
Lack of readiness to discuss ACP	Patients are still not quite grasping what this conversation is and more specifically for us, it’s the element of dialysis versus end of life and how does that combine with advance care planning as a whole	Nephrologist	Home HD
Family and cultural dynamics	I find a lot of our patients will tell us that they are thinking about stopping [dialysis] or they’re thinking that they don’t want to do it anymore, but they have family members that very much wish this not to happen and so they continue.	Nurse	Facility-based HD
	The culture of a patient plays a big role. In Canada, the patient has the final say. In other cultures, they usually play a significant role for their family.	Nurse	Home HD
	It’s mainly been like daughters or sons that don’t want to bring it up with their parents who don’t speak the language really well. I guess it falls back on us because in some of these clinic settings, when we have such limited time and we’re using the family members as interpreters. It’s not the best situation. I have sort of flagged, you know, we should get a formal interpreter in the next session.	Nephrologist	Home HD and PD
	Is there a word that translates properly into what I’m trying to convey here? And is it coming across and, you know, talking about death and dying? Talking about palliative here, it changes across culture.	Social Worker	Community dialysis unit
Socioeconomic challenges facing the patient	[For patients who] aren’t as educated or financially stable . . . I think it’s even harder for them because sometimes they feel like they don’t have much . . . I find that they don’t have as much strength to say no or tenacity to stand up for themselves	Nurse	Facility-based HD
Socioeconomic challenges facing the patient	They’ve never been asked, what matters to you and what does quality of life mean to you? They’ve never been asked this question, especially our patients who are new immigrants or who didn’t grow up in Canada, didn’t have that education. Nobody’s asked them about their healthcare or what matters to them, or what does quality of life mean.	Social Worker	Facility-based HD

Note. HD = hemodialysis; PD = peritoneal dialysis; All = kidney care settings, including HD, home HD, PD, and kidney care (nondialysis).

Table 3.

Themes and Interview Excerpts: Enablers.

Theme	Excerpt	Profession	Work setting
Health system and cultural level
Cultural shift toward integrating palliative approach in advanced CKD care	I think the difference in culture, the openness to having this conversation and to being really upfront with staff members and with patients has really assisted in that comfort level because all the team members are basically on the same page.	Social Worker	Kidney care (nondialysis)
Linkages between nephrology and palliative care	As much as we try to cater to palliative care, we don’t have as much training as a palliative physician would, and so having them has been kind of really helpful.	Pharmacist	Renal
Linkages between nephrology and palliative care	I owe a debt of gratitude to our palliative care physician group and also the nursing leads from hospice . . . we have ready access to them . . . and there’s seamless transition, for instance when a patient announces they want to stop dialysis.	Nephrologist	PD
Organizational level
Professional training, resources and support	It’s not that you’re sending the patients away but there’s constant symptom check-in and engagement of the community. I think having that kind of structure available and accessible and understandable to patients to frame what conservative care is like, and it’s not just leaving them and saying, “go home and die.” We still want to be involved. We still want to help.	Nephrologist	PD
	I think we need to have a little bit more understanding of pathways of options for people in terms of end-of-life care, so that we can provide them with real information, rather than just saying it is a choice. What exactly does that choice look like and what options can we provide for you?	Nurse	Facility-based HD
	I think what has helped is watching some of the nephrologists have conversations with [patients] . . . just watching the team, how they interact, and some of our nurses are really, really good at that, too.	Pharmacist	Renal
	I think trying to sit in on those discussions and just seeing how my colleagues who have perhaps been here for a long time and know more about cultural sensitivities have also given me some tools [that would help to alleviate discomfort].	Nephrologist	PD
	I think training, but also maybe mentorship . . . Or even mentorship with me. I’ve told nursing here since I got here, if you guys need help to have conversations with patients, ask me and we can do it together. We’ll go over it beforehand. We can practice that conversation and so I think that can happen.	Social Worker	Facility-based HD
Care team cohesion and clarity of roles	I’m very fortunate that I have a team who I’ve been with for a very long time. We’ve had ongoing discussions about what those conversations are supposed to kind of look like. And we support each other and we do debrief a lot.	Social Worker	PD
	When you reach out and speak directly to the primary care physician, they really appreciate our insight and I appreciate theirs. They may have a 20-, 30-year relationship with this patient that I’ve known for just a year . . . I also think there are nuances about the insights that social work and the primary hemodialysis nurse provide.	Nephrologist	PD
	I always thought it was a social worker conversation. Over the years, with awareness and education around it, [I realized] it’s the whole team.	Nurse	PD
	From a pharmacist perspective, I think we see our role as supporting the quarterback of the team and whether that’s social work who takes the lead or the nephrologist . . . we’re there to provide support.	Pharmacist	Renal
Health care provider level
Experiential knowledge	I think . . . seeing positive experiences of people choosing to stop [dialysis] and having control over choosing to stop . . . . Being able to pass peacefully, having family by their side, either being at home, going to hospice . . . and playing any kind of role in that happening . . . that experience just leads to more confidence over time.	Nurse	Facility-based HD
Experiential knowledge	Part of it is just having them and getting through the different reactions that people have and learning and adjusting along the way.	Social Worker	Facility-based HD
Relational approach for better patient engagement	It’s a conversation that takes place over time. And that’s why it’s good to start early because then it stays in the person’s mind . . . And sometimes they haven’t been asked this question ever.	Social Worker	Facility-based HD
	I think every patient has a different perspective and you need to respect that. I don’t know what the right or wrong answer is because in my head initially, I was like, surely [this patient] shouldn’t be on dialysis, but then he was lucid and could give me his perspective. If that’s enough for you, why should I judge that?	Nephrologist	Home HD and PD
	I think a lot of it is that they trust us and they’ve built a relationship with us and they just feel like they can really open up and express what their heart is desiring.	Nurse	Home HD
A sense of commitment	They’re [i.e., these conversations] not fun. I’ve done it enough that I wouldn’t say it’s stressful but I just don’t enjoy that. You do it because you care enough about those people to understand that that it is probably tearing them apart. If you give them the information, it’s going to ease their mind a lot more than if you just avoid the subject.	Nurse	Facility-based HD
A sense of commitment	You never feel extremely confident or enthused, but you do get a sense of closure . . . So, I would say comfortable with an air of cautious approach. It’s not satisfactory, but it’s nice to see someone given the information but able to get them through it as well.	Nephrologist	Home HD

Note. HD = hemodialysis; PD = peritoneal dialysis.

Barriers and challenges

Health system and culture

Tension between care driven by disease-specific therapies and palliative care: Providers pointed to challenges within the health system where there were separate approaches to care—palliative and CKD—although 1 social worker said that “there’s been a shift in the culture of talking about palliative approach to care that I think is more open now.”

Virtual care limitation: During the COVID-19 pandemic, the dependence on virtual care via phone and video visits challenged providers further in engaging in these discussions.

Organization

Delayed ACP discussions: Despite the project goal to support the integration of ACP and palliative care across the continuum of an individual’s illness journey, providers shared that ACP discussions occurred after the optimal time.

Lack of clarity around roles and ownership of ACP discussions in care teams: In general, the responsibility for discussing ACP fell on the nephrologist or the social worker as it appears that certain kinds of information, conversations, or decision-making authority were best suited for specific disciplines. However, this perception was not consistent among the providers, some of whom felt it was the responsibility of everyone in the care team.

Health care provider

Provider discomfort: Most providers stated feeling some level of discomfort in discussing ACP and palliative care with patients and their families. Sometimes, providers may not feel certain about the accuracy of the information they offer to patients, which may contribute to their feeling of discomfort.

Disagreement with values and expectations from patients: There were descriptions of providers experiencing tension when there was a misalignment with a patient’s choice and the provider’s recommendation.

Lack of established relationship with the individual: For providers who did not have a long-term relationship with a patient, the lack of rapport could make it difficult to initiate a difficult conversation.

Provider burnout: The discussions could be draining, which was particularly challenging amid competing priorities when the strain on providers was particularly high. In addition, providers also needed to respond to nonclinical needs which require time and capacity that could otherwise be devoted to ACP discussions.

Individual with CKD

Lack of readiness to discuss ACP: The providers stated that, for the most part, individuals with CKD were positive and receptive to discussing ACP. When they were not receptive, the providers felt this was related to not being ready or feeling overwhelmed by the information offered to them. Specifically, providers perceived that some patients seem to misunderstand the purpose of ACP discussions. Lack of information about ACP also created confusion around patients’ perceptions of illness and care options, including continued dialysis.

Family and cultural dynamics: Even if an individual with advanced CKD was ready to discuss ACP and had sufficient knowledge about palliative care, family members could have opinions and preferences regarding care that were different from the those of the patient. Cultural differences contributed to the role of family members as well as attitudes and perception of life and death which could pose a challenge among some providers in approaching ACP conversations with patients.

Socioeconomic challenges: Providers stated that education levels and financial stability of a patient could affect their understanding of the health care system and their ability to advocate confidently for their own well-being.

Enablers

Health system and culture

Cultural shift toward integrating palliative approach in advanced CKD: In general, providers stated that the culture shift toward integrating a palliative approach in advanced CKD management was taking place. A key factor was creating a culture of openness to discuss with patients and other providers broadly, using a provincial focus on data collection, program quality data reviews, standardized treatment options education, and tracking of the ACP conversations.

Linkages between kidney health care providers and palliative care: Receiving mentorship from providers already trained in the palliative approach outside of kidney care was supportive.

Organization

Professional training, resources and support: Structured training and resources were helpful, particularly for professions for whom ACP was not traditionally seen as within their scope of practice. More interactive and less formal support for providers, with close collaboration with palliative care or regular debriefing with colleagues, were also thought to be supportive. Several providers highlighted the importance of learning from their peers by informally observing them or by teaching/learning from each other.

Care team cohesion and clarity of roles: This included regular meetings and conversations with other members of the care team, engaging in shared training, and recognizing and working with the strengths and experience of other team members toward a shared goal of supporting patients and their families. This rapport among providers could extend beyond the clinic to other non–kidney health care providers, particularly the primary care physician. It was deemed productive when several providers within a care team perceived this as a shared responsibility. Furthermore, having clear roles based on professional scope and strengths of each discipline seemed to contribute to better team cohesion. In particular, the role of the nephrologist was emphasized as anchoring and leading the care team in integrating ACP into each patient’s care plan.

Health care provider

Experiential knowledge: Through time and experience, providers gained skillsets and a personal approach for navigating potentially uncomfortable conversations.

Relational approach for better patient engagement: Providers learned the importance of a relational approach to effectively engage individuals with CKD in challenging conversations. Providers used the terms “trust,” “rapport,” and “respect” and emphasized the importance of giving people time and space to absorb the information and make decisions, being nonjudgmental about their choices, recognizing one’s own biases, and placing the patient at the center.

A sense of commitment: This sensibility and personal commitment could help providers move through the discomfort of having these conversations.

Discussion

The results show that a relational approach to longitudinal care is vital for advancing the cultural shift from treatment focus to integrating palliative care across the continuum of the CKD journey. The findings are consistent with other studies involving individuals with advanced CKD, which show that it takes time for patients to gain a full understanding of the care options and supports available to them.²³ Therefore, it is important to engage in ACP discussions early and regularly and offer education and support as needed.^11,24 As individuals with CKD have been reported to value trust and rapport in their care,⁷ providers in this study also described building trusting relationships with patients over the course of their care and prioritizing empowerment of individuals with CKD as factors that enabled their engagement in ACP discussions. Kidney care teams are uniquely positioned to establish long-term relationships with individuals with CKD and facilitate earlier and more frequent ACP conversations. ACP conversations can be complex and elicit difficult emotions; therefore, considerations should be applied to optimize use of virtual and in-person care to support this aspect.²⁵ Virtual care can present additional challenges in maintaining this relational approach which can be addressed with a considered approach.

Similar to findings in other studies, the providers in this study expressed discomfort and uncertainty around having conversations with patients and families about ACP and palliative care.^11,26 Providers pointed out that greater clarity of roles and responsibilities around ACP conversations, cohesion among team members, and training and mentorship both within CKD clinics and with palliative care could help curtail the discomfort and uncertainty. Strong cohesion amongst the care team members, a shared vision of integrated palliative care, regular meetings to discuss cases and strategies, and a supportive environment of learning from one another have also been identified as instrumental enablers in similar studies on providers engaging in serious illness conversations.^11,24 Other studies have noted the importance of fostering a culture of openness and interdisciplinary conversations, embedding the philosophy of integrated palliative approach into data collection and program evaluations, and creating formal linkages and collaborations with palliative care.^26,27 These steps require institutional leadership and commitment, which have been identified as an important aspect of successful integration of ACP and palliative approach to CKD care.¹²

The providers in this study desired targeted education and resources to provide guidance around ACP conversations and treatment options. Many also noted challenges related to providing care for individuals and families from diverse backgrounds. Consistent with other observations in the literature on advanced CKD care, cultural differences with respect to end-of-life care and the role of the family,^28,29 and tensions and challenges that emerge in family dynamics in general,^23,26,28,29 are common in ACP. Further, these results echo other findings that socioeconomic disadvantages experienced by individuals with CKD could be associated with decreased capacity for self-advocacy (eg, due to less formal education or less financial stability) which can be a barrier to patient empowerment.⁷ Training for providers in cultural competency and safety when supporting individuals and families of diverse cultural and socioeconomic backgrounds will be supportive. Professional language interpretation service (including technology-assisted options) would also be beneficial when language barriers may exist, rather than relying on family members, to ensure accuracy. Additional supports for providers may include opportunities and resources around self-care and self-reflection, as well as support for debriefing.

This study was limited by purposive sampling. There is a potential for missing perspectives due to limited availability of providers to participate in the study. The participant settings can influence the data collected as a limitation of this study. Sample size was limited albeit reflecting a cross section of kidney care professions and different types of care settings. The findings are subject to possible reporting bias as some interview and focus group participants have a vested interest in a palliative approach to care. Validation of participant responses, which could strengthen the validity of the findings, was not undertaken. Additional studies that include a larger sample of frontline providers not involved in the provincial committees and the inclusion of perspectives of individuals with CKD may provide more comprehensive insights.

The study was strengthened by the use of multi-methods. The study scope—a provincial renal network—allowed us to examine a system as a whole. The findings are interpreted in the context of a publicly funded provincial renal network.

Conclusion

This study highlights the importance of role definition within a multidisciplinary kidney care team, targeted resources to support team efforts in ACP and the need for team organization care provider to work collaboratively to support the ACP conversations with patients. Long-term relationships with patients, common to CKD care, may enhance an integrated palliative approach across the continuum of the illness journey. The shift to this approach can be facilitated by enhancing provider comfort and competency, clarifying roles and responsibilities, supporting cohesion among care teams, and offering mentorship and targeted education and resources for all members of the kidney care team. Future research on the longitudinal impacts of the integrated palliative approach, enabled by timely ACP, on provider satisfaction, quality of care, and patient outcomes and experience will contribute to this growing field of literature in nephrology and potentially all areas of health care that support individuals with chronic life-limiting illness.

Supplemental Material

sj-pdf-1-cjk-10.1177_20543581251350891 – Supplemental material for Enablers and Barriers to Integrating Advance Care Planning in Chronic Kidney Disease Care in a Canadian Provincial Network

Supplemental material, sj-pdf-1-cjk-10.1177_20543581251350891 for Enablers and Barriers to Integrating Advance Care Planning in Chronic Kidney Disease Care in a Canadian Provincial Network by Helen H.L. Chiu, John Duncan, Sherri Lynn Kensall, Yanchini Rajmohan, Sushila Saunders, Sarah Thomas, Salma Wadhwania and Gaylene Hargrove in Canadian Journal of Kidney Health and Disease

Supplemental Material

sj-pdf-2-cjk-10.1177_20543581251350891 – Supplemental material for Enablers and Barriers to Integrating Advance Care Planning in Chronic Kidney Disease Care in a Canadian Provincial Network

Supplemental material, sj-pdf-2-cjk-10.1177_20543581251350891 for Enablers and Barriers to Integrating Advance Care Planning in Chronic Kidney Disease Care in a Canadian Provincial Network by Helen H.L. Chiu, John Duncan, Sherri Lynn Kensall, Yanchini Rajmohan, Sushila Saunders, Sarah Thomas, Salma Wadhwania and Gaylene Hargrove in Canadian Journal of Kidney Health and Disease

Footnotes

Acknowledgements

The authors are grateful for the feedback from all survey, interview, and focus group participants. We also acknowledge Helen Kang for her assistance in preparing the manuscript for publication.

ORCID iDs

Helen H.L. Chiu

Sarah Thomas

Ethical Considerations

The IPN project evaluation was proceeded as a limited risk study exempt from full review of institutional research ethics board. HC, YR, SS, ST, and SW are staff members at BC Renal. GH, JD, and SLK receive a stipend from BC Renal for their roles as chair and vice chairs of the provincial Palliative Care Committee. All authors report no other conflicts of interest.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The evaluation of the IPN project was funded via BC Renal internal funding for quality improvement.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Supplemental Material

Supplemental material for this article is available online.

References

Diamond

Armistead

Lupu

, et al. Recommendations for public policy changes to improve supportive care for seriously ill patients with kidney disease. Am J Kidney Dis. 2021;77:529-537. doi:10.1053/j.ajkd.2020.09.020.

Schell

Germain

Finkelstein

, et al. An integrative approach to advanced kidney disease in the elderly. Adv Chronic Kidney Dis. 2010;17:368-377. doi:10.1053/j.ackd.2010.03.004.

Luckett

Sellars

Tieman

, et al. Advance care planning for adults with CKD: a systematic integrative review. Am J Kidney Dis. 2014;63:761-770. doi:10.1053/j.ajkd.2013.12.007.

Hines

Glover

Holley

, et al. Dialysis patients’ preferences for family-based advance care planning. Ann Intern Med. 1999;130:825-828. doi:10.7326/0003-4819-130-10-199905180-00016.

Davison

. Facilitating advance care planning for patients with end-stage renal disease: the patient perspective. Clin J Am Soc Nephrol. 2006;1:1023-1028. doi:10.2215/cjn.01050306.

Holley

Nespor

Rault

. Chronic in-center hemodialysis patients’ attitudes, knowledge, and behavior towards advance directives. J Am Soc Nephrol. 1993;3:1405-1408. doi:10.1681/asn.V371405.

Goff

Eneanya

Feinberg

, et al. Advance care planning: a qualitative study of dialysis patients and families. Clin J Am Soc Nephrol. 2015;10:390-400. doi:10.2215/cjn.07490714.

Davison

. End-of-life care preferences and needs: perceptions of patients with chronic kidney disease. Clin J Am Soc Nephrol. 2010;5:195-204. doi:10.2215/cjn.05960809.

Renal Physicians Association. Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis. 2nd ed. Rockville, MD: Renal Physicians Association; 2010.

10.

Stevens

Levin

; KDIGO Working Group. Clinical practice guideline for the evaluation and management of chronic kidney disease. Kidney Int. 2024;105:S117-S314.

11.

Paladino

Sanders

Fromme

, et al. Improving serious illness communication: a qualitative study of clinical culture. BMC Palliat Care. 2023;22:104. doi:10.1186/s12904-023-01229-x.

12.

Paladino

Fromme

Kilpatrick

, et al. Lessons learned about system-level improvement in serious illness communication: a qualitative study of serious illness care program implementation in five health systems. Jt Comm J Qual Patient Saf. 2023;49(11):620-633. doi:10.1016/j.jcjq.2023.06.013.

13.

Mandel

Bernacki

Block

. Serious Illness Conversations in ESRD. Clin J Am Soc Nephrol. 2017;12:854-863. doi:10.2215/cjn.05760516.

14.

Holley

Davison

. Advance care planning for patients with advanced CKD: a need to move forward. Clin J Am Soc Nephrol. 2015;10:344-346. doi:10.2215/cjn.00290115.

15.

Chiu

Murphy-Burke

Thomas

, et al. Advancing palliative care in patients with CKD: from ideas to practice. Am J Kidney Dis. 2021;77(3):420-426. doi:10.1053/j.ajkd.2020.09.012.

16.

Weissman

Ambuel

Norton

, et al. A survey of competencies and concerns in end-of-life care for physician trainees. J Pain Symptom Manage. 1998;15:82-90. doi:10.1016/s0885-3924(97)00253-4.

17.

Heyland

Dodek

Lamontagne

, et al. The development and validation of a questionnaire to audit advance care planning (ACP). BMJ Support Palliat Care. 2012;2:175. doi:10.1136/bmjspcare-2012-000250.19.

18.

Kiger

Varpio

. Thematic analysis of qualitative data: AMEE guide no. 131. Med Teach. 2020;42:846-854. doi:10.1080/0142159X.2020.1755030.

19.

Braun

Clarke

. Using thematic analysis in psychology. Qual Res Psychol. 2006;3:77-101. doi:10.1191/1478088706qp063oa.

20.

Damschroder

Aron

Keith

, et al. Fostering implementation of health services research findings into practice: a consolidated framework for advancing implementation science. Implement Sci. 2009;4:50. doi:10.1186/1748-5908-4-50.

21.

Damschroder

Reardon

Widerquist

MAO

, et al. The updated consolidated framework for implementation research based on user feedback. Implement Sci. 2022;17:75. doi:10.1186/s13012-022-01245-0.

22.

Keith

Crosson

O’Malley

, et al. Using the consolidated framework for implementation research (CFIR) to produce actionable findings: a rapid-cycle evaluation approach to improving implementation. Implement Sci. 2017;12:15. doi:10.1186/s13012-017-0550-7.

23.

Sobels

Best

Chadban

Pais

. End stage kidney disease patient experiences of renal supportive care in an Australian teaching hospital—a qualitative study. J Pain Symptom Manage. 2022;63(5):737-746. doi:10.1016/j.jpainsymman.2021.12.024.

24.

Kurella Tamura

Holdsworth

Stedman

, et al. Implementation and effectiveness of a learning collaborative to improve palliative care for seriously ill hemodialysis patients. Clin J Am Soc Nephrol. 2022;17(10):1495-1505. doi:10.2215/cjn.00090122.

25.

Bevilacqua

Melnyk

Chiu

, et al. Patient and clinician experiences with the combination of virtual and in-person chronic kidney disease care since the COVID-19 pandemic. Can J Kidney Health Dis. 2023;10:20543581231217833. doi:10.1177/20543581231217833.

26.

Axelsson

Benzein

Lindberg

, et al. End-of-life and palliative care of patients on maintenance hemodialysis treatment: a focus group study. BMC Palliat Care. 2019;18:89. doi:10.1186/s12904-019-0481-y.

27.

Ducharlet

Weil

Gock

, et al. How do kidney disease clinicians view kidney supportive care and palliative care? a qualitative study. Am J Kidney Dis. 2023;81:583-590e581. doi:10.1053/j.ajkd.2022.10.018.

28.

Shrank

Kutner

Richardson

, et al. Focus group findings about the influence of culture on communication preferences in end-of-life care. J Gen Intern Med. 2005;20:703-709. doi:10.1111/j.1525-1497.2005.0151.x.

29.

Bullock

. The influence of culture on end-of-life decision making. J Soc Work End Life Palliat Care. 2011;7:83-98. doi:10.1080/15524256.2011.548048.

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