Continuity and discontinuity of end-of-life care: A grounded theory study of bereaved family caregivers’ experiences

Abstract

Background:

Approaches to measuring continuity of care are underdeveloped for the end-of-life context, yet important for understanding the quality of end-of-life care.

Objectives:

Our objective was to develop a grounded theory of continuity of care at end-of-life through the distillation and synthesis of interviews with bereaved family caregivers, which focused on perceptions and experiences of continuity of care at end-of-life.

Design:

This qualitative study is phase III of a four-phase mixed-methods sequential explanatory study with the aim of determining which aspects of continuity of care matter most to patients and family caregivers and, accordingly, to develop a novel continuity of care index.

Methods:

Family caregivers completed one 60-min audio-recorded semi-structured virtual interview. Interview questions explored perceptions and experiences through four categories of questions: Patients’ end-of-life experiences, family caregivers’ desires for end-of-life care, family caregivers’ perceptions of prior quantitative findings, and patients’ and family caregivers’ experiences of continuity of care at end-of-life.

Results:

Twenty-one family caregivers completed interviews; 33% were aged 19–44, 90% identified as women, 85% lived in urban settings, and 19% identified as a visible minority. Our theory focuses on patterns of continuity and discontinuity of care at end-of-life. Following Corbin and Strauss’ grounded theory method, we identified causes, contextual/intervening conditions, strategies, and consequences. Causes included health-human resource supply and system integration; conditions included tension between preferences and system capacity, and personal resources. Strategies involved aligning care with cultural or religious considerations, identifying a single point of contact, and delivering information appropriately. Consequences included patients and caregivers feeling educated and prepared, a comprehensive approach to care, and the provision of high-quality, consistent care.

Conclusion:

Combined with prior work, these findings will inform a continuity index for use as a system-level end-of-life care indicator.

Keywords

bereavement caregivers continuity of patient care grounded theory qualitative research

Introduction

Continuity of care (CoC) is defined as “the degree to which a series of discrete healthcare events is experienced as coherent, connected, and consistent with the patient’s medical needs and personal context.”¹ CoC is a key aspect of quality healthcare delivery, ensuring that patients receive comprehensive, coordinated, and attentive care. It is commonly conceptualized across three domains: relational CoC at the micro level; management CoC at the meso level; and informational CoC at the macro level.^2,3 Relational CoC involves long-term, person-centered relationships built on consistent, trusting interactions between the patient, their family caregivers (FCs), and their healthcare team.^4,5 Management CoC refers to the coordinated delivery of healthcare services across settings and providers.⁶ Informational CoC ensures that patient information is accessible and shared among providers and FCs to facilitate unified and coordinated care.⁷

An effective CoC has multiple benefits for patients and FCs. Strong relational and informational continuity is associated with improved patient outcomes, higher satisfaction, and enhanced quality of life, as well as reductions in emergency department visits and hospitalization rates.^2,3 Management continuity reduces duplication of services, optimizes resource use, and can yield economic benefits for healthcare systems.⁸ Moreover, patients and caregivers report greater confidence and reduced stress when care is consistently coordinated across providers and settings.^2,9

CoC is particularly important for patients at end-of-life (EoL), who often experience complex, evolving needs.⁹ Poor continuity can lead to fragmented care, unmet symptom management needs, repeated assessments, unnecessary hospitalizations, and increased stress for both patients and FCs. Effective CoC ensures coordinated decision-making, communication, and continuity of relationships, which can improve patient and FC satisfaction, enhance quality of life, and reduce unnecessary healthcare utilization. Globally, millions of adults require palliative and/or EoL care each year, emphasizing the significance of continuity of a large (and growing) population.¹⁰ Despite its importance, approaches to measuring CoC in general and particularly at EoL remain underdeveloped, and no universally accepted tool exists to comprehensively capture relational, management, and information continuity.^1,4,6,11

Previous research has documented that discontinuity of care (DoC) is common during EoL, where patients often see multiple physicians across various specialties, which can contribute to fragmented care, delayed symptom management, and caregiver stress.^12,13 Existing quantitative indices of CoC derived from health administrative data are challenging to interpret during the EoL period.⁸ These gaps highlight the need for a holistic, comprehensive theory to underpin the development of these quantitative metrics that accurately reflect CoC and DoC from the perspectives of patients and their FCs.¹⁴ Our team’s multi-year mixed-methods program of research aims to address shortcomings of present approaches through the development of a novel index to measure CoC at EoL.

Objective(s)

Our objective was to develop a grounded theory of CoC at EoL through the distillation/synthesis of interviews with bereaved FCs, which focused on perceptions and experiences of CoC at EoL.

Methods

Study team

The research team included two health services researchers (S.R.I. and M.H., both of whom hold PhDs), a statistical analyst (S.H., who holds an MPH), two research coordinators (T.S., who holds a BA, and A.W., who is currently pursuing a master’s degree), and a research assistant (H.M., who holds a BSc). S.R.I., an experienced qualitative researcher, provided guidance to H.M. and T.S., who primarily conducted the research. All researchers identified as female, except for S.H., who identified as male.

Study design and methodological approach

This qualitative study is phase III of a four-phase mixed-methods sequential explanatory study^11,13,15 with the aim of determining which aspects of CoC matter most to patients and FCs and, accordingly, to develop a novel CoC index. In phase I, we conducted a population-based retrospective cohort study using healthcare administrative data in Ontario, wherein we defined and described models of healthcare that reflect different aspects and degrees of CoC, identified disparities in CoC, and explored the association between aspects of CoC and EoL outcomes.^11,13,15 In phase II, we employed a novel research-to-public-to-research feedback loop, in which we translated our findings into a participatory design installation, The Terminal Diner, which shared our quantitative findings and elicited public engagement for further knowledge creation (manuscript in progress). This installation was exhibited in numerous venues throughout Ontario, Quebec, and British Columbia. Phase III (the present phase) leverages the knowledge of FCs with lived experience caring for a patient who received healthcare at EoL. A grounded theory approach was employed to explore patterns of CoC and DoC, allowing the generation of a theory grounded in participants’ lived experiences. This approach guided both data collection and analysis: interviews were conducted iteratively, codes and categories were developed through constant comparison, and memos documented emerging insights and reflexivity. Theoretical saturation was reached when no new themes relevant to the study’s aims emerged.^16,17 In phase IV, we will implement an arts-based knowledge translation of our findings through a theater workshop.

Participant recruitment

As our study did not specifically target clinical populations, FCs were recruited from the public. A purposive sampling framework was used to recruit bereaved caregivers of patients who had received EoL care in Toronto, Ottawa, or Hamilton. Time since caregiving was not a criterion for participation. Our intention was to recruit FCs from Ontario, in an attempt to align findings to our Ontario population-level data collected in phase I.

With assistance from palliative program leaders, healthcare divisions were emailed with study details and recruitment criteria. The co-principal investigator (M.H.) approached an interprofessional family practice in Hamilton, who agreed to display a recruitment poster in the waiting room. Moreover, the research coordinator (T.S.) posted recruitment fliers within various Facebook groups, and contacted organizations, such as Bereaved Families of Ontario Ottawa, to share study information. Recruitment additionally occurred through a recruitment poster displayed alongside the phase II design installation at several Ontario-based venues, including Evergreen Brickworks (Toronto), David Braley Health Sciences Centre at McMaster University (Hamilton), and Ottawa School of Art (Ottawa). Paper fliers were also distributed alongside the design installation, each containing a QR code linking to a Microsoft Form with study details and eligibility criteria. Through this form, caregivers could provide their consent to be contacted by the research coordinator regarding participation. No prior relationships with potential participants were established, and no data were collected during this phase. Participants were provided with an overview of the study and informed about what would be expected of them should they choose to consent.

The inclusion criteria for all FCs stipulated that FCs must identify as bereaved caregivers who provided support to a patient who received healthcare at EoL. Additionally, FCs were required to have the capacity to provide informed consent, be fluent in English, and be at least 19 years of age, in accordance with policy at Bruyère Health Research Institute. We did not set a specific minimum time since bereavement was an exclusion criterion, as our aim was to capture a broad range of bereaved FC experiences.

Setting

FCs completed a singular 60-min audio-recorded semi-structured virtual interview conducted by either T.S. or H.M. At each interview, a research staff member (T.S. or H.M.) took notes. We also collected demographic information via a questionnaire developed using Microsoft Forms. The questionnaire collected basic demographic information and was not a validated measure. PlayWrite, Inc. transcribed interviews verbatim and de-identified transcripts; Transcripts were not returned to participants for comment. This study was approved by Bruyère Health Research Institute as Study Number M16-24-001.

Data collection

The research team developed an interview guide that contained four distinct parts. The interview guide is attached as Supplemental Appendix A, and Figure 1 provides an overview of the four parts of the guide. In part one, FCs shared background information about the deceased patient (for whom the participant was a FC), including the participant’s relationship to the patient, their caregiving roles, as well as the patient’s healthcare experience in the last year of life (e.g., doctor managing medical care, other healthcare providers (HCPs) involved in care delivery, setting of care, and location of death). In part two, FCs were asked to reflect on their own desired EoL experiences, specifically regarding care management, HCP involvement, setting of care, and location of death. In part three, FCs reviewed health administrative data findings from phase I of the overarching research program^11,13,15 and reflected on how those findings differed from the patients’ experience and/or their own desired experience. FCs also reviewed findings from phase II’s participatory design installation, The Terminal Diner, and were asked to reflect on how results differed from the patients’ experience and/or their own desired experience. We then asked FCs to brainstorm the ideal model of EoL care, including primary provider, setting, and location of death, as well as changes needed within our healthcare system to achieve the desired model of EoL care. In part four, we asked FCs to reflect on the patients described in part one CoC experience, and whether CoC varied by HCP and setting of care, whether CoC or DoC influenced EoL, and what aspects of CoC were helpful or harmful. Interview questions were selected to capture FCs’ EoL experiences, FCs’ desires for EoL care, perceptions of prior quantitative findings, patients’ and family caregivers’ experiences of CoC at EoL, and to elicit experiences with the three facets of CoC (relational, management, and informational).

Figure 1.

Interview guide format.

Data analysis

Consistent with grounded theory methodology, data was analyzed iteratively in three stages: open, axial, and selective coding. These stages allowed the identification of a core category that explained patterns of CoC and DoC at EoL.^16,17

Data was coded by two independent coders (T.S. and H.M.) using Corbin and Strauss’ grounded theory analysis of interview transcript data.^16–18 Throughout each stage of coding, T.S. and H.M. wrote reflexive and theoretical memos within MAXQDA.¹⁹ Memos were used to document emerging ideas, reflect on biases, and guide the refinement of subsequent codes and categories. These memos served as a dialogue between the data and the researchers, allowing T.S. and H.M. to critically examine patterns, question assumptions, and make deliberate decisions about which codes to merge, expand, or redefine. Insights captured in the memos directly informed the development of conceptual categories and helped shape the emergent theoretical framework by highlighting relationships and underlying mechanisms within the data. Theoretical saturation was reached once no new insights relevant to the emergent theory were discovered.

Open coding

First, T.S. and H.M. reviewed transcripts individually. Using open coding,^16,17 T.S. and H.M. engaged in an iterative process to develop the codebook, whereby we reviewed the same transcript separately, and then met to modify the codebook over several meetings. Within this process, we compared and collapsed codes, and restructured the codebook several times. For example, we collapsed the codes “Caregiver Tasks,” “Communication,” and “Coordination” to fall under the parent code “Caregiver Role.” Similarly, we organized the child codes “Community,” “Duration,” “Hospital,” and “Long-Term Care” under the parent code “Care Setting.” Data saturation was achieved once no new parent or child codes were identified in the dataset. T.S. and H.M. group-coded the first two transcripts, and then consensus-coded two transcripts; the remaining 16 transcripts were double-coded.

Axial coding

We then engaged in axial coding^16,17 to connect our initial codes developed during open coding to further elucidate relationships among our codes.^16,17 Following Corbin and Strauss’ coding paradigm,^16–18 we reorganized initial codes around five domains (or axes), including: causes (i.e., what led to the phenomenon under study), context and intervening conditions (i.e., what is the context of the phenomenon under study and what conditions influence it), strategies (i.e., what strategies do actors use to deal with the phenomenon), consequences (i.e., what results from the phenomenon and the way actors deal with it), and phenomenon (i.e., the phenomenon under study).^16–18 Within each domain, we categorized data related to the different types of continuity (i.e., informational, management, relational) or as a cross-cutting theme that related all three types of CoC.

Selective coding

In our final stage of coding, we identified a core category that incorporated other categories (as determined in axial coding) to constitute a grounded theory. Finally, we identified exemplary quotations from transcripts of each domain, as presented in Table 1. Our theory is presented narratively below.

Table 1.

Exemplary quotations.

Facet of grounded theory	Cross-cutting theme	Facet of CoC	Subtheme	Exemplary quote
Causes		Informational	HCP coordination	“We needed to restart on both stops: hospital and [transitional care unit], with conversations with the staff on site about medical history, preferences, values—you know, all of these things that I think that the family doctor could do a better job of transmitting at these moments.” FC10
			Health system integration	“She did have a general practitioner. She had a number of medical crises that had her then going into emerg, and all the coordination between the hospital care and the family practitioner was far from seamless. And then coordinating discharge plans between the hospital and family doctor was almost impossible.” FC1
		Management	Transferring care across HCPs and/or settings	“[Family doctor] was a really important player for [patient] in making decisions and, you know, the central point of contact for medical advice. It was unfortunate that she wouldn’t visit or couldn’t visit in the home or, you know, in the house, and then once the transition to the hospital happened, then that relationship was disrupted.” FC10
		Relational	HCP engagement in care	“It’s just sort of you feel like a number [. . .] And that’s the sad part because it’s the last moments. It’s the last few days, and you’re already so distressed. And then you just feel—you’re sitting in the hospital. I remember all the hours just sitting there and thinking—you’re not thinking you’re just a number. But you just feel like, is [the patient] really being taken care of? Like, I don’t know [. . .] And I remember the last day. Even the physician who came in, it was just very cold, and when I decided that we’d take him off support, because I was the person who had that authority, I just remember thinking, oh, I wish it was a little different.” FC4
			Health-human resource supply	“I think that it’s a very sad thing that homes that care for the aged are not appropriately staffed. Ageism is rampant, and that sometimes it’s just decided to let the person exist without appropriate care.” FC9
			HCP training	“But [the healthcare team] was a lifesaver for her because, again, they were sort of trained with skills to really help her cope with some of, like, what she was experiencing, right? [. . .] If her behaviors were going to flare up, they did so at nighttime, and that’s when that team was there to help cope with some of that stuff.” FC20
Contextual and intervening conditions	Alignment between preferences and system capacity/feasibility			“I mean, it obviously depends on the situation, of course but speaking ideal, I don’t have children, I don’t have the capability for someone to walk alongside of me. I have family, very close family, but I don’t have children, so the choices will be a little bit different for me and [Medical Assistance in Dying] is definitely one of them. I hope that that can be done at home.” FC14
	Personal resources			“I had private PSWs for my mother. So I had one lady that was there during the day and another lady that was there at night, so the continuity of care was maintained, but I paid for it.” FC9
Strategies	Advocacy for self and/or patient			“I guess the other thing that it made me reflect on is, like, we were very present with my mom. My mom had many people advocating and supporting, and it just made me think about folks. There’s a lot of folks who don’t have anybody. And, like, you know, it made me think about, like, you go into the hospital, and you have your purse, and like, you know, nobody is going to watch that. Or, like, you know, yeah, you’ve just been put in a hallway, and you don’t speak English, and nobody is listening to when you have to go to the bathroom.” FC13
	Care aligned with cultural and/or religious considerations			“So, she was Hungarian. And the two ladies that looked after her were both Hungarian, so they could speak to her in the language that she grew up in, and I think that was comforting to her because they spoke to her in loving terms.” FC9
	Use of interdisciplinary team			“The physician was just always, always there, always sort of in the background. Many times he would do the visit for the nurse so the nurse didn’t have to come. So you could just see the cohesiveness of the team.” FC16
		Informational	Information delivery	“The day that [the patient] died, when the doctor came to sign the papers that he had died, that doctor talked to my son and was so helpful, you know, and kind of like, did some doctoring with [my son], and that was amazing. And, actually, [my son] managed fine with his dad dying.” FC7
			Education, training, and resources available at EoL	“And I would say there were kind of no supports for me, as you would give for a caretaker. Probably it was much more stressful for me than it was for him. I mean, his needs were looked after, I think, as well as I could or could have been. And if the PSW didn’t work out, I would get another PSW. So he didn’t have the continuity through most of the time, till I switched to a private firm, that I would have liked him to have all the way along. But it was a few hours a day, and I was there the rest of the time. So I would say that I don’t know what supports can be provided to caretakers, but I think that’s an important issue to address as well.” FC5
			Handover between healthcare systems	“I think in an ideal world, it would be nice for the family doctor to be involved and to be able to go to the hospital and talk to the family, and then maybe do a handover to the palliative care doctor, if that’s the next best doctor to provide the care, or if the palliative care doctor can be there more often. Because I know family doctors can’t be in the hospitals all the time. They have to be in their clinics seeing patients. But that would be really nice, if the doctor could be there and say, okay, introduce you to the palliative care doctor and say she or he is going to take over now, but you can still call me if you have questions. Because I think people really do build strong relationships with their family doctors, and they trust them a lot. So it would be nice if they could still be available to the family if needed.” FC22
		Management	Identifying a single point of contact	“It would really depend on what my circumstances were, but I think it would be wise to have some kind of a coordinating person in addition to the physician.” FC1
		Relational	Support received after death	“When I think of continuity of care, I think of it even after. I think of after that last moment, that last breath. How does the person leave their home for the final time? How does the family witness that? How do you deal with the funeral home, or a or a family-led funeral? Or how do you deal with all of that? So that to me, the continuity of care does not end at the last breath. But because the thing is, you’re left with caregivers, or you’re left with family members that then need the system, right? They need mental health resources. They need support. They need everything.” FC14
Consequences	Educated/prepared for future needs and decision-making			“But you know, for her, her family doctor was a trusted expert, and someone that she knew, and that idea of trust was really prevalent [. . .] So I’d say that’s the most important thing was that it gave her some confidence in decisions, and helped her frame the important parts of the conversations when the family doctor was involved. I was grateful for input from her when possible.” FC10
	Reduced errors between HCPs and/or across healthcare settings			“It showed they didn’t even know what was going on. There were errors. You sort of had to stay on top of them.” FC16
		Management	Comprehensive approach to care	“My ideal would be being referred to a community palliative care team, where there’s a nurse who comes and visits as well or as needed, and they kind of tailor that to people.” FC29
		Relational	High-quality, consistent care is delivered	“I think it helped because especially the fact that he was suffering from dementia. They need routine. They need to see the sort of the same people. So they need routines. That only helps. So for him in particular and what he was suffering from, it really was valuable.” FC4

CoC: continuity of care; EoL: end-of-life.

Results

Twenty-one FCs completed qualitative interviews. Seven FCs (33%) were between the ages of 19 and 44; 19 (90%) identified as women; 18 (85%) resided in an urban setting; and 5 (19%) identified as a visible minority. No one refused to participate; however, two participants who had registered for an interview withdrew, and no reasons were provided. Participant demographic characteristics are presented in Table 2.

Table 2.

Participant demographics.

Characteristics	No. (%) of FCs
Age
19–44	7 (33)
45–54	4 (18)
55–64	6 (29)
65–74	2 (10)
75–84	2 (10)
Setting
Urban	18 (86)
Rural	3 (14)
Gender
Woman	19 (90)
Man	2 (10)
Identification of Indigenous
No	20 (95)
Yes	1 (5)
Identification of visible minority
No	16 (76)
Yes	5 (24)
Relationship to patient
Child/child-in-law	9 (43)
Grandchild	4 (18)
Spouse	2 (10)
Parent	2 (10)
Niece/nephew	2 (10)
Friend	1 (5)
Sibling	1 (5)
Lived with patient
No	15 (71)
Yes	6 (29)
Were patients’ medical decision-maker
Yes	12 (57)
No	9 (43)
Length of time since patient died
Less than six months ago	1 (5)
7–12 months ago	3 (14)
1–2 years ago	4 (18)
2–3 years ago	1 (5)
More than 3 years ago	12 (57)

FC: family caregiver.

Using grounded theory, we developed our theory entitled “Patterns of Continuity and Discontinuity of Care at EoL.” Our theory encapsulates several domains, including causes of context and intervening conditions that influence, strategies used to approach, and consequences resulting from patterns of CoC and DoC at EoL. Our results from open, axial, and selective coding are described below.

Open coding

Our codebook is attached as Supplemental Appendix B.

Axial coding

Our coding paradigm organized causes, context and intervening conditions, strategies, and consequences related to our core phenomenon. Below we describe each of these domains according to the facets of CoC, as well as cross-cutting themes that impact all three facets of CoC. Our coding paradigm is presented in Figure 2.

Figure 2.

Coding paradigm.

Causes

Informational CoC

HCP coordination

The lack of coordination among HCPs, both within the same healthcare setting and across different settings, often resulted in the neglect of patients’ and FCs’ desires and goals at EoL, thus impacting informational CoC. FCs expressed the need to repeatedly convey essential patient information, such as medical history and patient preferences/values, when transitioning between healthcare locations to ensure patient care was effectively coordinated. One participant also indicated that a family physician would be more adept at transmitting this critical information (FC10). Furthermore, a participant described the negative implications of community personal support workers (PSWs) delivering uncoordinated care and a lack of information sharing, which they acknowledged could arise from the absence of an overarching management system. FCs specifically noted that critical information surrounding tasks, as well as tasks themselves (e.g., feeding, bandaging, and medication administration) were not properly coordinated among HCPs (FC1).

Health system integration

Siloed healthcare systems significantly impacted patterns of informational CoC for patients at EoL; the disjointed relationships between various healthcare entities, such as hospitals, community services, and long-term care facilities adversely affected informational CoC, especially when patients transitioned between care settings. For instance, FCs noted the disjointed discharge coordination between hospital-based healthcare teams and family medicine practitioners (FC1) when patients were discharged from the hospital to their homes for EoL care. Furthermore, essential external services, such as neurology and psychiatry were often discontinued once a patient transitioned from their home within the community to a long-term care (LTC) facility; consequently, care became managed solely by the care facility (FC20). These siloes were amplified by technology, such as the implementation of data-sharing platforms among HCPs working within the same healthcare setting, and the inability to share data across electronic medical record platforms in different healthcare settings.

Management CoC

Transferring care across providers and/or healthcare settings

Management CoC challenges arose when, nearing EoL, management of a patient’s care was transferred from their family doctor (or another HCP with whom the patient and FC had an established relationship) to a hospital or homecare team. At that juncture, the original HCP often became less involved. This DoC commonly occurs when a patient transitioned from home to hospital or LTC settings. Relationships with community HCPs, such as nurses or PSWs, were often severed upon the patient’s transition. Typically, if the patient had a longstanding relationship with their family doctor, FCs viewed this individual as a key decision-maker and central point of contact for medical advice. However, during transitions, management CoC was frequently disrupted, and negatively impacted, as the family doctor tended to withdraw from active involvement (FC7). Consequently, a new HCP team and/or point of contact was assigned. FCs acknowledged that the introduction of new provider(s) presented challenges, namely impacting management CoC, as the patient and FC had to establish trust with these individuals at a particularly precarious and vulnerable point in the patient’s care trajectory (FC10).

Relational CoC

HCP engagement in care

Relational continuity became fragmented when patients and FCs perceived that their HCPs were not fully committed to delivering exceptional EoL care. For instance, during distressing periods in the hospital, some FCs reported feeling like a mere “number,” rather than a FC for a vulnerable patient (FC4). Furthermore, others expressed that physicians assigned to the patient’s care in LTC settings did not prioritize the patient’s needs and preferences in their care delivery (FC20), which they felt negatively impacted relational CoC.

Health-human resource supply

Health-human resource supply negatively impacted relational CoC, as well as overall quality of care provided at the patient’s EoL. Specifically, shortages in nursing and PSW services had detrimental implications for patient care. For instance, FCs described patients’ experience of prolonged wait times to have their needs addressed, such as being assisted into wheelchairs (FC20). Furthermore, these shortages increased the burden on FCs. The inconsistency of filled roles, as well as the lack of continuity with the same provider, created stress and frustration for both patients and FCs. In some cases, FCs reported that they had to cancel community services due to the increased burden on the FC when relying on these services (FC14).

HCP training

Relational continuity is contingent upon HCPs being sufficiently trained to navigate the unique needs and conditions of patients at EoL. FCs expressed appreciation for care providers who possessed specialized training to assist patients in coping with specific conditions, such as Alzheimer’s disease, while delivering palliative care (FC24). FCs also valued HCPs ability to offer training and suggestions for coping strategies to other members of the healthcare team (FC20).

Contextual and intervening conditions

Cross-cutting themes

Alignment between preferences and system capacity/feasibility

Alignment between patient/FC preferences and system capacity/feasibility to achieve those preferences intersected with all facets of CoC. For example, some FCs expressed a desire to receive EoL care at home but recognized that this was not always feasible due to patient care needs exceeding the availability of publicly funded homecare supports (FC20). Similarly, necessary home accessibility modifications often entailed substantial financial costs, which were not feasible for all families (FC20). Some FCs noted that the absence of FCs in their lives who could assist with homecare precluded their preference for EoL care at home (FC14). Lastly, FCs described lengthy wait times for LTC homes and noted that many LTC homes may not align with their cultural preferences, often forcing patients to accept the first available option (FC9).

Personal resources

FCs’ personal resources intersected all facets of CoC. When FCs had personal resources (financial and otherwise) that they could leverage to better support the patient, they reported high levels of all three types of CoC during the patient’s last year of life. For instance, some FCs described hiring private PSW support to help ensure consistency in the PSWs caring for the patient (FC9), while another participant resigned from their occupation to provide hands-on care to the patient (FC9). Enhanced CoC was also catalyzed when FCs reported having familial or social supports who could manage and coordinate care for the patient (FC5 and FC14), or when FCs noted their educational or vocational background (i.e., health literacy) better equipped them to communicate clearly with HCPs, thereby enhancing information sharing (FC19).

Strategies

Cross-cutting themes

Advocacy for self and/or patient

FCs ensured that the HCPs respected the patients’ wishes regarding EoL care, promoted comprehensive information sharing among all caregivers, and advocated for EoL service delivery in their community (FC14). This advocacy in turn helped to facilitate all three forms of CoC.

Care aligned with cultural and/or religious considerations

Aligning care with patients’ cultural and religious preferences helped to facilitate all three forms of CoC. This alignment involved communication between the patient, FC, and HCP regarding the patient’s preferences, such as specific genders of providers due to religious beliefs. Additionally, one participant suggested that HCPs should facilitate the patients’ spiritual approach to EoL care (FC13) while another participant suggested that HCPs should be able to communicate in the patient’s preferred language (FC19).

Use of an interdisciplinary team

FCs expressed a preference for utilizing an interdisciplinary team to provide care during EoL, highlighting the advantages of a team-based approach in the delivery of timely and comprehensive care, which in turn helped to facilitate all three facets of CoC. FCs specifically noted that a cohesive care team that adhered to a unified care plan across HCPs ensured that patients received stable and appropriate care. When collaboration occurred across HCPs, FCs experienced reduced strain, and patients benefited from improved CoC in all facets (FC16). This team-based model enhanced coordination among medical personnel and care settings, minimizing the burden of unnecessary appointments and addressing transportation challenges between care settings (FC29). Additionally, FCs indicated a preference for smaller, consistent groups of HCPs, as larger care teams were perceived as overwhelming and susceptible to miscommunication. Rotating among a few familiar team members fostered consistency and familiarity, which were particularly advantageous in managing complex cases such as dementia (FC2 and FC4).

Informational CoC

Information delivery

Appropriate information delivery facilitated informational CoC. Specifically, FCs noted that information delivered in an appropriate manner would help to reduce anxiety and worry for both patients and FCs. Receiving test results directly from HCPs, rather than electronically, allowed for necessary explanations and support for the patient and FC. FCs highlighted the importance of clear communication and expressed that receiving test results without discussion from a physician (i.e., through online avenues such as MyChart) led to heightened levels of anxiety (FC3). FCs suggested that HCPs ensure that medical information is communicated clearly and with compassion, considering the emotional impact on patients and caregivers, especially at EoL. Relaying burdensome information, such as EoL prognoses, should be discussed in lay terms, and in a comforting manner, to soothe the already difficult situation and not contribute stress (FC7).

Education, training, and resources available at EoL

Properly educating, training, and providing resources to FCs for EoL helped to facilitate informational CoC. FCs expressed that they needed training tailored to their patients’ specific needs and conditions. Without adequate training, compensation, and resources (FC4, FC11), FCs struggled to provide optimal care (FC11). FCs also needed to understand the patient’s condition, including the dying process, and suggested that HCPs should create opportunities for FCs to ask HCPs questions about the patient’s deterioration (FC3). Support services for FCs were essential, including increased social support, mental health services, and assistance for those experiencing anticipatory grief (FC9). Additionally, some FCs indicated a need for respite care for those caring for patients at home (FC20).

Handover between healthcare systems

It was burdensome for patients and FCs to repeatedly share information, such as medical history, preferences, and values, when receiving treatment from different HCPs, hindering informational CoC. This burden highlighted the importance of smooth transitions of care between HCPs in the same healthcare setting, as well as between hospital and community systems. Ensuring effective handovers, by employing a consistent physician or care team who is familiar with the patient’s history, personality, and disease trajectory, facilitated easier transitions of care and reduced redundancies, such as needing to re-explain the patients’ health history, and in turn helped to facilitate informational CoC (FC16).

Management CoC

Identifying a single point of contact

FCs expressed a preference for having a single “healthcare manager” to coordinate services and assume an authoritative role within the healthcare system. Having a designated point of contact, such as a family doctor (FC10) or separate coordinator working in conjunction with the patient’s family physician (FC1), significantly alleviated the burden on FCs through the organization of services and communication coordination, thus facilitating management CoC. More specifically, this role was described as a guide for patients and FCs through critical transition points and a facilitator of service coordination among the various HCPs involved in care, such as nursing and palliative services (FC11). This approach not only minimized delays in care but also reduced stress for both the patient and their FCs by ensuring timely access to necessary resources (FC14). FCs acknowledged that a healthcare manager could adjust their level of care involvement based on the support required, transitioning from passive oversight to active management (FC16 and FC19). As the central figure of care, the primary contact could ensure effective coordination of treatment among interdisciplinary team members and the coordination of services across various healthcare settings. Without this role, FCs noted that care delivery often became fragmented, limiting the overall quality and consistency of support received (FC20).

Relational CoC

Support received after death

HCP support offered to the FC after the patient had died helped to facilitate relational CoC. For example, FCs noted the importance of support for families witnessing the patient’s last moments and the final departure from home, if the patient died at home. They also highlighted the value of HCPs’ continued support with pragmatic issues, such as assistance with funeral planning and the provision of mental health support for grieving family members (FC14). Additionally, it was crucial for HCPs to understand religious considerations and preferences regarding the patient after death, and to continue checking in on FCs following the patient’s passing (FC19).

Consequences

Cross-cutting themes

Educated/prepared for future needs and decision-making

A consequence of all three areas of CoC was that patients and FCs felt educated, prepared, and equipped to make future decisions related to their care needs. For example, patients and FCs reported understandings of what specialized care entailed (i.e., palliative vs disease-specific) (FC16), and understandings of patients’ disease trajectories, including unique declining conditions (FC3). Education and preparedness also entailed having a clear care plan, resources available to support both the patient and the FC within the community (FC1), as well as an understanding of how to ensure that the patients’ EoL wishes could be met, such as facilitating a home death (FC16).

Reduced errors between HCPs and/or across healthcare settings

A consequence of all three areas of CoC was that fewer errors were made related to patients’ wishes/needs among HCPs within the same care setting, compared to HCPs working across a variety of settings. HCP errors frequently related to dietary needs (FC5), equipment-related concerns (FC7), and past medical history (FC16). When fewer errors were made, this highlighted that the HCP team was working together to ensure that seamless care was provided.

Management COC

Comprehensive approach to care

A consequence of the management CoC was that the care patients and FCs received was comprehensive. For instance, when an interdisciplinary team (e.g., nursing, PSWs, physicians, palliative-trained HCPs, spiritual care) provided care, they were able to help patients and FCs navigate a wide variety of healthcare concerns (FC27). Additionally, comprehensively delivered care helped ensure that care was tailored to the patients’ specific needs (FC29).

Relational CoC

High-quality, consistent care is delivered

A consequence of relational CoC was that care delivered by HCPs with whom patients and FCs had established long-term relationships was characterized by trust, support, and reassurance. When the same HCP consistently delivered care, FCs were less likely to need to advocate continuously for the patient’s needs and wishes (FC16) or to repeat information to new healthcare teams (FC10). Furthermore, having a consistent service provider fostered a relationship not only with the patient but also with the accompanying FC, establishing the service provider as a reliable resource for guiding decision-making processes and providing reassurance (FC4, FC16). Familiar HCPs understood, and could better facilitate, the patients’ preferences for EoL care (FC13) while consistently addressing routine healthcare needs (FC1, FC2). FCs noted that patients felt more content knowing they were receiving care from familiar faces (FC2), which reinforced the perception that the HCP was genuinely invested in their well-being at EoL. This continuity was particularly advantageous for patients with conditions requiring routine management, such as Alzheimer’s disease (FC4).

Moreover, when there are no gaps in health-human resources, FCs are not left to take on the responsibility of addressing the emotional and spiritual needs of patients, alongside assisting with their physical care demands (FC9). As one participant described, FCs often lost sight of their role as a family member rather than a formal caregiver and reported feeling like they did not have the capacity to attend to their own feelings and losses (FC7) while having to fill the gaps left by HCPs.

Selective coding

Our theory proposes that there are several causes that lead to patterns of CoC and DoC at EoL. For example, informational CoC is impacted by the coordination among HCP and healthcare system integration, while management CoC is impacted by transferring care across HCPs and/or healthcare settings. Causes leading to relational CoC include HCP involvement in care, health-human resource supply, and HCP training.

Moreover, this theory proposes that there are two contextual and intervening conditions that influence all three facets of CoC, including the alignment between preferences and system capacity/feasibility, as well as FCs personal resources.

Several strategies exist that relate to all three facets of CoC, including advocacy for the FC and/or the patient, alignment of care with cultural and/or religious considerations, high-quality consistent care, and the use of an interdisciplinary team to facilitate CoC. Information delivery, education, training, and resources available at EoL, as well as effective handovers between healthcare systems facilitate informational CoC. Identifying a single point of contact facilitates management CoC, while receiving support after death facilitates relational CoC.

Lastly, two consequences stem from all three facets of CoC, including being educated/prepared for future needs and decision-making, and the reduction of errors between HCPs and/or across healthcare settings. Consequences of informational CoC include having a single point of contact to coordinate services, and a comprehensive approach to care. A consequence of relational CoC is the delivery of high-quality, consistent care.

Discussion

Main summary of findings

Following Corbin and Strauss’ approach to analysis, we utilized a coding paradigm to identify causes, contextual and intervening conditions, strategies, and consequences of our phenomenon under study. Within each domain of our coding paradigm, we categorized data relative to the type of continuity or cross-cutting theme. By triangulating our qualitative findings with our two previous project phases, we further refined and enhanced our grounded theory of patterns of CoC and DoC at EoL.

Unique findings related to EoL

Within each domain of our coding paradigm, we identified several unique findings related to patterns of CoC and DoC at EoL. First, we noted that CoC was impacted by the intersection of HCP skills and the quality-of-care patients received at EoL. Similarly, we found that HCPs providing family members with support after the patient had died positively facilitated relational CoC. Moreover, education, training, and resources available to FCs at EoL supported informational CoC. Lastly, we determined that the consequences of CoC identified at EoL differ from the consequences of CoC during other periods of life. For example, in other contexts, consequences of continuity of a family doctor for routine care are often reported as efficiency, more preventive care, better adherence to treatments due to a trusting relationship, and improved health outcomes.^20–23 Within the EoL context, several consequences included the importance of patients and family caregivers feeling prepared for changes in the patient’s condition and decisions that may arise from such changes, emotional preparation, as well as support from known providers during challenging periods.

Methodological contributions

This work is novel, as the generation of our grounded theory was developed through FCs’ reflection on quantitative population-level data, and the results from a public-facing design installation. More specifically, our robust four-part interview guide leveraged the combination of FCs’ own experiences in caring for a patient at EoL, reflections on individual- and system-level data, and aspirations for FCs’ own EoL experiences.

Grounded theory methods were applied within a larger sequential explanatory mixed-methods design, allowing qualitative findings to build on prior quantitative results and support theory development related to continuity and DoC at the EoL. This design integrated healthcare administrative data from Ontario, public consultation through a design installation, and qualitative inquiry with bereaved FCs.

Many studies exploring factors related to CoC are focused on experiences of patients and HCPs. For example, a qualitative review exploring patient and physician perspectives on CoC indicated that CoC can contribute to an enhanced sense of work fulfillment and purpose for HCPs, while for patients, CoC can lead to an increased quality of life.⁴ However, limited research is available exploring the perspectives of FCs, despite their essential roles in caregiving and decision-making. This study makes a unique methodological contribution by leveraging the underrepresented and vital perspectives of FCs to inform the development of a grounded theory of patterns of CoC and DoC at EoL.

This research helps to inform the methodology of index research, highlighting the shortcomings of administrative data when investigating complex concepts, such as CoC. It underscores the necessity for complementary qualitative work alongside quantitative components.

Application of theory

This study contributes to our understanding of important aspects of continuity at the EoL, how continuity that supports positive EoL outcomes can be measured, and the considerations for indicators of CoC at EoL. Several CoC indices exist to quantify this concept using health administrative data; however, indices typically capture physician encounters rather than encounters with other providers due to availability of claims data.²⁴ It is unclear if published indices designed mainly for primary care are applicable at EoL. In our previous work, we applied three common indices of CoC to outpatient physician encounters over the last year of life using health administrative data.⁹ Results suggested that common measures of CoC may not be ideal for use near EoL as they fail to consider patients’ complexity which necessitates appropriate involvement of multiple providers for comprehensive care.⁹ By combining the results from phases I to III (i.e., quantitative, design, and qualitative) to develop a comprehensive understanding of the nature of CoC at the EoL in Ontario, we are equipped to make concrete recommendations to knowledge users regarding how to incorporate continuity as a system quality indicator.

Strengths and limitations

Strengths of this work include our sample size (i.e., 21 FCs), which is adequate for achieving theoretical saturation. Other notable strengths of this work include our identification of several unique findings related to patterns of CoC and DoC at EoL. Our novel approach to developing a grounded theory involved combining FCs’ reflection on quantitative population-level data, as well as insights gained through a public-facing design installation. Additionally, we utilized a robust interview guide to leverage the combination of FCs’ own experiences in caring for a patient at EoL, reflections on individual- and system-level data, and aspirations for their own EoL experiences. Limitations of this work include FCs’ difficulties when asked to predict their EoL preferences. Many FCs struggled to articulate these preferences and were heavily influenced by concerns regarding the potential burden they might impose on their FCs at EoL. This potentially indicates that our interview guide did not probe deeply enough, or more broadly, it is difficult for individuals to anticipate their future feelings. Furthermore, while we sought representation with our recruitment strategy, including the featuring of the design installation in various public spaces to engage a diverse range of individuals in spaces that were meaningful to them, our sample was not widely diverse; one (5%) participant identified as Indigenous, and five (24%) FCs identified as part of a visible minority. Lastly, the questionnaire used to collect basic demographic information was not a validated measure, nor was it pilot-tested.

Next steps

In phase IV, we will conduct a proof of concept of arts-based knowledge translation in collaboration with a theatre production company and a playwright. Our objective is to establish a methodological framework that effectively translates health services research into a theatrical production, culminating in a theatre event that showcases combined findings from phases I to III.

Findings from this qualitative analysis, alongside data triangulated from phases I and II, will directly inform the development of a continuity index for EoL, which may be employed as a system-level EOL quality-of-care indicator. Subsequently, the qualitative findings will also inform an epidemiological analysis of the relationship between the continuity index and patient-level EoL healthcare outcomes.

Conclusion

This study deepens understanding of how CoC and DoC are experienced at the EoL by integrating qualitative insights with quantitative indicators and public engagement findings. While the themes identified align with prior research emphasizing relational, informational, and management continuity, our analysis uncovers previously unreported patterns of CoC and DoC that occur during key EoL care transitions, including subtle interactions and decision points not captured in population-level studies. Grounded in participants’ lived experiences, these findings provide a more nuanced and dynamic conceptualization of CoC and DoC, highlighting how continuity is enacted, disrupted, and negotiated in real-world settings. By bridging population-level patterns with individual narratives, this work introduces novel insights that can directly inform the design of targeted interventions and practical measures to enhance continuity at the end-of-life.

Supplemental Material

sj-docx-1-pcr-10.1177_26323524251415403 – Supplemental material for Continuity and discontinuity of end-of-life care: A grounded theory study of bereaved family caregivers’ experiences

Supplemental material, sj-docx-1-pcr-10.1177_26323524251415403 for Continuity and discontinuity of end-of-life care: A grounded theory study of bereaved family caregivers’ experiences by Taylor Shorting, Hannah Millward, Aria Wills, Shuaib Hafid, Michelle Howard and Sarina R. Isenberg in Palliative Care and Social Practice

Supplemental Material

sj-docx-2-pcr-10.1177_26323524251415403 – Supplemental material for Continuity and discontinuity of end-of-life care: A grounded theory study of bereaved family caregivers’ experiences

Supplemental material, sj-docx-2-pcr-10.1177_26323524251415403 for Continuity and discontinuity of end-of-life care: A grounded theory study of bereaved family caregivers’ experiences by Taylor Shorting, Hannah Millward, Aria Wills, Shuaib Hafid, Michelle Howard and Sarina R. Isenberg in Palliative Care and Social Practice

Supplemental Material

sj-pdf-3-pcr-10.1177_26323524251415403 – Supplemental material for Continuity and discontinuity of end-of-life care: A grounded theory study of bereaved family caregivers’ experiences

Supplemental material, sj-pdf-3-pcr-10.1177_26323524251415403 for Continuity and discontinuity of end-of-life care: A grounded theory study of bereaved family caregivers’ experiences by Taylor Shorting, Hannah Millward, Aria Wills, Shuaib Hafid, Michelle Howard and Sarina R. Isenberg in Palliative Care and Social Practice

Footnotes

Acknowledgements

The authors extend their gratitude to all participants who contributed to this study.

ORCID iDs

Taylor Shorting

Hannah Millward

Aria Wills

Sarina R. Isenberg

Ethical considerations

This study was approved by Bruyere Health Research Ethics Board as Study Number M16-24-001.

Consent to participate

To reduce participant burden, verbal informed consent was obtained at the start of the virtual interview in lieu of requiring signed forms to be exchanged electronically. A completed and signed consent form was then provided to the participant upon conclusion of their participation.

Consent for publication

Consent for publication was obtained from participants immediately prior to study commencement.

Author contributions

Taylor Shorting: Formal analysis; Methodology; Project administration; Writing – original draft; Writing – review & editing.

Hannah Millward: Formal analysis; Methodology; Project administration; Writing – original draft; Writing – review & editing.

Aria Wills: Methodology; Project administration; Writing – review & editing.

Shuaib Hafid: Project administration; Writing – review & editing.

Michelle Howard: Conceptualization; Funding acquisition; Investigation; Supervision; Writing – review & editing.

Sarina R. Isenberg: Conceptualization; Funding acquisition; Investigation; Supervision; Writing – review & editing.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The authors would like to acknowledge that this work was funded by the Canadian Institutes of Health Research: Project Grant (Funding Reference Number: 180345).

Declaration of conflicting interests

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

Data availability statement

Our interview guide and codebook are attached as .

Supplemental material

Supplemental material for this article is available online.

References

Haggerty

Reid

Freeman

, et al. Continuity of care: a multidisciplinary review BMJ. 2003; 327(7425): 1219–1221.

Kim

Park

, et al. Hospital charges and continuity of care for outpatients with hypertension in South Korea: a nationwide population-based cohort study from 2002 to 2013. Korean J Fam Med 2017; 38(5): 242–258.

Ljungholm

Edin-Liljegren

Ekstrom

, et al. What is needed for continuity of care and how can we achieve it?—Perceptions among multiprofessionals on the chronic care trajectory. BMC Health Serv Res 2022; 22(1): 686.

Nowak

Sheikhan

Naidu

, et al. Why does continuity of care with family doctors matter? Can Fam Physician 2021; 67(9): 679–688.

Alberta Health Services. What is continuity of care? https://www.albertahealthservices.ca/Blogs/lrp-calgary/256.aspx (2017).

Burge

Lawson

Johnston

, et al. Primary care continuity and location of death for those with cancer. J Pallliat Med 2006; 6(6): 911–918.

Howard

Hafid

Isenberg

, et al. Intensity of outpatient physician care in the last year of life: a population-based retrospective description study. CMAJ Open 2021; 9(2): E613–E622.

Howard

Hafid

Webber

, et al. Continuity of physician care over the last year of life for different cause-of-death categories: a retrospective population-based study. CMAJ Open 2022; 10(4): E971–E980.

Howard

Hafid

Isenberg

, et al. Physician continuity of care in the last year of life in community-dwelling adults: retrospective population-based study. BMJ Support Palliat Care 2024; 14: e1443–e1452.

10.

Tran

Falster

Jorm

Claims-based measures of continuity of care have non-linear associations with health: data linkage study. Int J Popul Data Sci 2018; 3(1): 463.

11.

Hafid

Isenberg

Fernandes

, et al. End-of-life care among patients with kidney failure on maintenance dialysis: a retrospective population-based study. Can J Kidney Health Dis 2024; 11: 20543581241280698

12.

Kern

Bynum

JPW

Pincus

HA.

Care fragmentation, care continuity, and care coordination—how they differ and why it matters. JAMA Intern Med 2024; 184(3): 236–237.

13.

Hafid

Wills

Quinn

, et al. Patterns of healthcare delivery among adults with heart failure in the last year of life: a retrospective population-based study. J Am Heart Assoc 2025; 14(10): 1–11.

14.

Duhoux

Allard

Hamel

Quality of palliative and end-of-life care: a quantitative study of temporal trends and differences according to illness trajectories in Quebec (Canada). BMC Palliat Care 2024; 23: 93.

15.

Fernandes

Hafid Gayowsky

, et al. Care utilization patterns among patients dying with advanced chronic obstructive pulmonary disease. Can J Respir Crit Care Sleep Med 2025; 9(2): 85–93.

16.

Strauss

Corbin

Basics of qualitative research: grounded theory procedures and techniques. Sage Publications, 1990.

17.

Strauss

Corbin

Basics of qualitative research: techniques and procedures for developing grounded theory. Sage Publications, 1998.

18.

Saldana

The coding manual for qualitative researchers. Sage Publications, 2016.

19.

VERBI Software. MAXQDA: software for qualitative data analysis, https://www.maxqda.com (2025).

20.

Baker

Freeman

Haggarty

, et al. Primary medical care continuity and patient mortality: a systematic review. Br J Gen Pract 2020; 70: e600–e611.

21.

Bazemore

Petterson

Peterson

, et al. Higher primary care physician continuity is associated with lower costs and hospitalizations. Ann Fam Med 2018; 16(6): 492–497.

22.

Periera Gray

Sidaway-Lee

White

, et al. Continuity of care with doctors—a matter of life and death? A systematic review of continuity of care and mortality. BMJ Open 2018; 8(6): e021161.

23.

Wensing

Szecsenyi

Laux

Continuity in general practice and hospitalization patterns: an observational study. BMC Fam Pract 2021; 22(1): 1–21.

24.

Bahler

Blozik

Marti

Continuity of care in Swiss cancer patients using claims data. Eur J Public Health 2023; 33(3): 396.

Supplementary Material

Please find the following supplemental material available below.

For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.

For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.

0.00 MB

0.04 MB

0.88 MB