Developing a tool to advance person-centred care in hospice: The little things are the big things

Rapid review

We started with a rapid literature review ¹² to assess the current evidence base of tools for amassing and leveraging non-medical information to enhance person-centred care in palliative end-of-life care. An Ovid MEDLINE search string was developed for the period January 1, 1946 to August 1, 2023 (see Supplemental Appendix B). After title and abstracts review, articles meeting inclusion criteria were retained for full-text review: Language: English; Setting: hospice, palliative care, rehabilitation, mental health, long-term care; Intervention: tools administered by healthcare professional or volunteer that asked non-medical questions to patients to improve person-centred care. Additional sources were identified by reviewing reference lists. We used a descriptive narrative synthesis to summarize results. ¹³

Survey

The findings from the literature review were brought together with the 8-member team’s background knowledge (including hospice care and management, implementation science and research methods) to create an online survey for hospice professionals. For example, the review showed how other clinical settings were seeking out and operationalizing non-medical information about their patients; we compared this information to how the SELFY was being deployed and operationalized. Such comparisons helped us distil key elements to include in the survey. For example, the question: ‘Who typically asks these questions?’ was developed after we saw the variability in the tools.

The survey explored interest in person-centred care, inquired about tools similar to the SELFY, and requested feedback on actual or anticipated challenges with implementing such tools. Given our goal of collecting descriptive data specific to our focused project, we did not require a validated tool. Survey responses were collected using REDCap (Research Electronic Data Capture) hosted at Nova Scotia Health,^14,15 using yes/no and multiselect options, Likert scales, and open text boxes (Supplemental Appendix C). The survey was developed and piloted with the entire team for clarity, flow and time to complete. It was then circulated as follows:

Qualitative interviews

With findings from the above, we designed a qualitative component to understand what the SELFY enabled at the Hospice, including challenges and facilitators to implementation, intended and unintended consequences of its use, and ideas for future directions. We conducted deliberative focus group interviews ¹⁶ and semi-structured interviews with purposeful samples of four categories of interest-holders:

The interview guides (available upon request) were informed by the literature review and survey. For example, from the review we learned that available tools are scant; this finding inspired a focus on if/how staff feel person-centred care is an element of hospice palliative care. From the survey, we heard concerns that responding to the non-medical elements of patients’ lives could add to staff workload and so we developed a question in the interview guide asking if/how the SELFY increases workload in order to better explore this concern.

Recruitment was done by the Volunteer Program Lead (LMC) who already had a relationship with potential participants and who shared the goals of the project with them. The majority of participants were interviewed on Hospice premises. Duration of interviews ranged from 30 to 90 min. The data were audio-recorded and transcribed immediately after each interview. The researcher who facilitated the interviews (MEM) is a research professor with postdoctoral-level training in qualitative research. The Volunteer Program Lead (LMC) assisted the in-person and hybrid focus groups. MEM wrote fieldnotes after each interview which were used to shape approaches to subsequent interviews. Data were analysed iteratively following Summary & Analysis coding, Micro themes, Meso themes, Syntheses, and Analysis (SAMMSA) ¹⁷ an approach that facilitates deductive and inductive summarizing and theorizing as the analysis proceeds. Initial data were coded by MEM with deductive codes built from the concepts in the interview guides and emergent inductive ideas. Following, a codebook was created which was then applied to all data and updated as the codes evolved through the analysis. A list of salient themes was then prepared, followed by cross-unit analysis in which themes were re-titled and described, with exemplar quotations illustrating their content. The entire team then read through and amended the final analysis.

A final mixed analysis was conducted of the entire data set, which involved synthesizing the results from each component. Multiple team meetings were held to complete this process, through which key considerations for enabling person-centred palliative end-of-life care were identified. This process included developing summary tables of the tools identified through the literature review and survey. Updating the SELFY was done by line-by-line comparisons of the original SELFY content and domains with the retrieved tools, and with team reflections on the qualitative findings to determine what constituted new and valuable insights. Our research assistant took notes during all team deliberations. These notes were then used as a rich data set from which the team built a toolkit for trialling the SELFY beyond the Hospice setting.

Timing

A theme that ran across the interviews was the importance of timing; this included when the Hospice team received the SELFY form, as well as the ideal time for the form to be filled out. Important elements of timing were as follows:

Preparing ‘the welcome’: It became clear early in the trial period that having the completed form at the Hospice prior to admission could optimize staff’s ability to welcome the patient in a manner that would set the tone for the patient’s stay. A manager conveyed how completing the form contributed to allaying patients’ concerns prior to transferring to Hospice:

It’s scary coming to [a] hospice. I had a recent meeting with a patient who said, ‘It’s not that I didn’t want to come, but I knew it would be my last place’. So, when someone has that in their mind, anything you can do that kind of just diffuses that a little bit, that gives them that peace of mind, that let’s them know, ‘These are good people, they want to know about me. Why are they asking these questions? Well, maybe because they do care’.. . . [With the SELFY], the comfort can start right away, even before you get here.

Having the form completed prior to admission also contributed to staff readiness to welcome the patient, as it provided the opportunity to learn about the patient’s personal background. This knowledge ensured kitchen staff could have preferred foods on hand, and that music therapists could prepare instruments and musical offerings. This timing also allowed staff to personalize the patient’s room. Examples include sports themes (one patient arrived to a room with the TV tuned to the Masters Tournament (golf), a putting green on the floor, and a green jacket – like the coveted tournament prize – hung over a chair), and music themes (one room was decorated with Elvis Presley paraphernalia, including a themed tissue box).

Accuracy: As accuracy can be a moving target at end of life, the ideal timing for filling out the form was debated. As a senior clinician suggested, for patients who are followed in their own homes, or through the palliative care unit, nurses can be well-placed to start collecting social background well before transfer. The need to update domains after a patient’s admission to Hospice was also discussed, as preferences and goals can change as death approaches. Discussions of how and when to capture and revise the information are discussed below under the theme, Updating a ‘live’ document.

Completing the form has added value

Most admissions to the Hospice are from the local palliative care service, where the intake nurse is responsible for filling in the form. When patients are transferred from community settings, the form might be filled by a nurse or social worker. An exceptional circumstance was recounted in which a family member filled the form themselves. Staff reflected: ‘She wrote a book’, meaning this family member included extensive details. Importantly, this family member reported back: ‘Did I ever have fun, did it ever bring back memories!’ Staff also recalled that this particular form was exceptionally useful.

In the interviews with family members, it was clear that being asked the questions for the form was a heartening experience. One spouse recounted how proud they were to share such details with the team: ‘I thought: Oh my gosh, you’re really interested in knowing [my spouse]. I was pleased that they’re asking about all this – I’m very proud [of my spouse]!’

Implementing the SELFY is ‘an opportunity’

We specifically ask managers about the initial barriers around implementing and operationalizing the SELFY. A manager said: ‘It was one of the easiest things that we ever have done’. No team members offered a negative word about the process, either.

All team members indicated that the first thing they would do when they were preparing to meet a new patient was read the form. When asked if this was because of a required protocol, the answers were unequivocal: Regardless of a protocol, reading the form was the most efficient way for staff to get to know who they would be caring for. A standard patient chart provides reams of information; yet, reading the chart did not convey the ‘whole person’ as efficiently, as effectively, and as thoroughly as reading the two-page form.

One clinical staff told us the following when asked if it was ‘required’ that they read the form:

Whether it was or not, it was my preference to go directly to [the SELFY] and read it first. Because then I had a person whose story I was reading. I wasn’t reviewing a chart for ‘John Smith’. I got into the habit of using [the SELFY] to say: ‘Yes, now I know their name and I know who they are, what their life was, what’s important to them’. And so, by the time – even before I ever got to what their diagnosis might have been – I knew who they were first. And then I would continue with the rest of it, after that. It set a tone. I wasn’t looking at patient #1 in room 104. I was looking at John Smith, who had a lovely family and who loved pets and did this for a living [. . .] So I loved it. And then I would go on to continue my chart review: Why are they here? What is the diagnosis, medically, functionally, physically. Now, what am I worried about? But this gave me who that person was right off the bat.

Further, for team members who were not formally involved in clinical processes (e.g. kitchen staff, volunteers), having access to the form was especially appreciated as it brought them into patient care in new ways. A patient care attendant said:

P: We don’t see the medical chart, so seeing this, we get to know more personalization about the patient and their family members and know them by name. Especially if I’m not here [when they arrive], I can come in and read that form and know more about the patient.

MEM: So, it brings you into the care in a different way?

P: Yeah, definitely.

One nurse stressed that they revisited the form throughout the patient’s stay, especially during quiet times (e.g. night shifts), re-reading the form to learn from the new edits and re-familiarize themselves with the patient as a person. Across all interviews, participants saw the form as ‘an opportunity’ that enhanced how they did their work.

A communication tool: Enhancing efficiency, enabling engagement

Ideally, clinical tools are efficient and not overburdening for staff or patients. A hoped-for premise of the SELFY was that it would be both: patients and families would be asked non-medical questions only once and not have to respond to multiple staff asking their own versions of the same questions. Furthermore, all staff would have access to the information, thereby reducing charting time. One clinician summed up these elements: ‘Instead of being the 15th person to ask, “Do you have children?” [after reading the form] you can say, “I heard that your son, John, really loved this or was super interested in that”’.

We specifically asked about how the SELFY contributed to efficiency. Staff uniformly reported that it saved them time which then allowed other important tasks to be completed. Time-savings were depicted as especially valuable in the context of end of life, when ‘time is of the essence’. A criterion for admission to the Hospice is a prognosis of less than 3 months. Furthermore, coming to the Hospice can be especially fraught; as one clinician phrased it, ‘It’s a huge decision. It’s a complete and utter change in goals of care which may have happened very rapidly. So, while it can be as wonderful environment – as this is – it’s also obviously a very stressful time’. Thus, saving time by building rapport and trust meant the team could more quickly get to the heart of what was important for the patient’s stay.

The entire team emphasized that the form enhanced the efficiency of the work that could be done in the short amount of time available. As one nurse said, ‘[When reading the form] you’re learning stuff that would otherwise take you a month to find out’. Having this background information helped staff cut through pleasantries; in that way, it acted as an ‘instant rapport builder’. A clinician quantified this element, saying it ‘makes that connection happen twice as fast, even five times as fast’. As a communication tool, the SELFY improved the route to building relationships. For example, looking through the form could provide nuggets of information that staff could then use to break the ice and build rapport (e.g. I hear that you like Golden Retrievers – I have two! Aren’t they wonderful?). Finding a shared interest helped level the playing field and established a foundation of trust. With trust came more ease and comfort with care decisions (e.g. I think this cushion will help your pressure sore – want to give it a try?).

The form also provided a snapshot of who the patient was before coming into the Hospice. The item, What does an ideal day look like for you?, was considered especially useful. A clinician recounted how this entry helped enormously with a chronically ill patient who had lived a sedentary life prior to arrival. His ideal day included many hours sitting on the couch watching TV. This short entry helped with goals for mobility:

He hadn’t [gone walking] for five years. So, we don’t need to do that for the next five weeks! We need to respect his lifestyle and his choices. So that made work way easier. I didn’t spend half an hour arguing with that man every day to get out of bed. I walked in and said: ‘Is this still working for you, are you good? Do you need anything different?’ [He replied:] ‘No, dear, I am happy. I am comfortable’. [. . .] He wasn’t a big talker. He might not have got down to the brass tacks of that whole issue and his values around that for weeks. The right work sometimes isn’t necessarily more work.

The information on the form also helped avoid what previously would have fuelled assumptions. In the past, the intake form collected the patient’s religion, but not their relationship to their religion. For example, their chart might simply have stated ‘Roman Catholic’; it would not have described their personal engagement with their religion, such as ‘no longer practicing’. As one clinician recounted, the SELFY’s version is preferable: ‘There’s nothing more awkward than asking a person about their religion when they are no longer practicing that religion or now have really strong feelings against it’.

The volunteers’ responses were unequivocal as well. The form made their work easier, particularly by providing ‘ice breakers’ that initiate conversations from which they could build more meaningful discussions and relationships. The phrases they used to describe how helpful they found the form included: ‘It really gives us a lot to work with’; ‘This really helps’; and ‘Every bit of it, I think, is very helpful’. One volunteer summed it up: ‘This form prevents us from going in blind. Like, right away, you can start a conversation. You know so much about the patient [. . .] This is our lifeline to the patient’. Another volunteer who had been at the Hospice prior to the implementation of the form added: ‘Before, you’d go in without any background information; you’re going fishing, you know, trying to read the room, and stick handle around the patient or the family members that are there. But this is better, because you can zoom in on things, yeah’.

Family participants recounted only deep-seated admiration for the form and process. They were amazed at how the information they had added to the form was being operationalized in the care of the patient. One family member who worked in long-term care commented on how they had never seen a process like the SELFY: ‘That’s why it’s so refreshing to come in here, because, you know, where I go on a day-to-day basis, and then come in here – it’s so positive, even though you’re dealing with end-of-life clients. . .’. They added, ‘I think this is fantastic [. . .] I can’t think of anything else that you can add. You cover all bases. Yeah, great job’.

Raising expectations; Rising to occasions

A concern we had going into the interviews was that the promise to operationalize the form could create heightened expectations on the part of patients and their families. Furthermore, we were worried that heightened expectations could create additional work for staff. When this line of questioning was posed, answers were unequivocal: Staff told us that yes, the SELFY did create expectations, but that was the point. As a clinician said: ‘It does indeed raise people’s expectations, but probably it should, because too often those details of the person get lost in the shuffle of meeting their everyday needs medically or physically, right?’ In a different focus group, a clinician responded with pride: ‘We do meet most of their expectations – I think we exceed them, most of the time. Yes, this is why we’re here’. This comment was followed by another who said: ‘It’s the “feel good”. . .it’s what fills my cup and gets me out of bed the next day. You’ve absolutely made a difference’. They then recounted an example:

I’ll go back to that old gentleman, who was unconscious for two days, not moving a muscle. His favorite group was [a local band]. And so, we asked the band to come to the Hospice. They came in and sang. And this gentleman was tapping his finger right to the music. He’s in there, he’s hearing, and he’s listening. That, yeah, that was the day. So . . . I mean, we are sitting watching this little hand move, with tears rolling down our eyes, like. . .. something so little made a difference to that man. That’s the stuff that makes you feel good.

The tasks that evolved from the SELFY were not considered ‘work’. One staff said, ‘Sure, its one more thing to do in a busy day, but it’s good stuff. . . I’ve never considered it work’. They added, ‘We’ve all made the choice to work here. That’s the kind of stuff that brings us fulfillment, knowing that we’re doing something meaningful for others’. Finding a particular CD, looking for wild meats out of season, putting up a Christmas tree in July, and trying to locate sports-themed clothing were all recounted as enjoyable challenges that added, not subtracted, from the team members’ workday.

In the discussions, staff were clearly excited to rise to the occasions and expectations produced by the SELFY. While the idea of decorating patient rooms was started by the Volunteer Program Lead, other staff joined in to share the responsibility:

It was [Volunteer Program Lead] doing it for the most part for the first little bit. But then the nurses, they would catch on and when a new patient was announced, they started asking: ‘Do we have something for the door? Can we do this. . .?’ And then they would start printing stuff and put it up. They’re really starting to enjoy. . . when they see a patient coming in for the first time and the patient looks up at their door and sees, you know ‘This room was reserved for Toronto Maple Leaf fans only!’. . . It’s wonderful!

A few months after the SELFY had become integrated into patient care, SELFY-inspired activities were no longer seen as exceptional; they had become normalized. This evolution was recounted across the interviews with pride. For example, a manager relayed how kitchen staff tailored meals to the patients’ desires: ‘We always ask about favorite foods, and we’ve had our lovely chef go out and get moose meat, eels, lobster, crab. Sometimes it is a little pricey, but she manages. I don’t know how she does it. I asked her one day. They never really told me, so I didn’t ask too much. But you know what? People are very willing to do what they can to support these kinds of concerns’.

From the perspectives of families, it was the ‘little things’ enabled by the SELFY that truly mattered. One person said: ‘It’s every single thing that you have on this [form] that makes a difference. It’s the little things that. . . We can afford to buy her whatever she needs, we can afford to do things for her. But it’s these things, every single one of them. I can’t think of anything that I would add’. Another member of that family added: ‘What a great way to get to know her. You know, we came here and right away, things were so much about her, you know. It’s kind of like, when she’s here, she kind of forgets that she’s sick. And maybe it’s because, because of all the little things. They make her feel like she’s family. She says that all the time: She feels like she’s family’. A member of another family echoed these words: ‘Every little thing, the tiniest little thing might not mean that much to you. But I think to them, it’s the world. Whether it’s as minor as the smell of the cream that you put on her’.

Job satisfaction

The spirit of meeting patient expectations spilled over into interactions not directly linked to the SELFY. An example was given about learning through a conversation with a spouse that it was their wedding anniversary. The staff mobilized to stage a vow renewal ceremony within hours of receiving this information. This same example was recounted in more than one focus group, and it was brought up to stress how these activities enhance job satisfaction. A clinician said: ‘I can guarantee you when the staff went home, they weren’t talking about “who had what medication” and you know “who ate their full dinner” or whatever. They were talking about that vow renewal ceremony, right? So, you know, this is the kind of. . . this is the “feel good stuff,” right?’

The ‘secret sauce’ to success

The SELFY was developed to fit into the cultural tone and work culture of the Hospice. Many patients hail from small towns or villages, hardworking backgrounds and communities that run many generations deep. Local culture is purposeful and transparent about tracing lineage. Upon meeting for the first time, people often trade answers to the question ‘Who’s your father?’ This direct query has the potential to turn possible strangers into new friends.

The palliative care service in which the Hospice sits integrates community-based home and long-term care with the palliative care unit at the regional hospital. Many clinical staff work across multiple sites and the cadre of volunteers come from across the region. Therefore, it is common for patients arriving at the Hospice to already be minimally familiar with, and comfortable with, the members of the care team.

A query we had at the outset was how much the success of the SELFY was due to the local context. We asked participants to explicitly reflect on their experiences outside of the Hospice and outside of the region. Responses we heard suggested that a ‘secret sauce’ made of Cape Breton culture and Hospice values was baked into the SELFY. These values aligned with the normative values of high-quality palliative care. Staff reiterated that the SELFY is not ‘rocket science’; it is driven by a deep-rooted premise that care will be best if you really know who you are caring for. While Cape Bretoners may be especially good at getting to know people, as a medical leader said, the SELFY is fuelled by what all healthcare practitioners should be trained to do: Listening to patients and families.

Diving deeper into if and how the Cape Breton context fuelled the success of the SELFY, one clinician helped clarify. They had worked in many other local healthcare facilities and across many levels of care. While they felt it was often possible to find common ground with patients and families, doing so took time and could also be ‘pure luck’. In contrast, with the SELFY, ‘[it] tells me all the things that I need to know about somebody, then I can go in and make that personal connection’.

We inquired how and if financial resources were a part of the ‘secret sauce’. A manager stressed that they have a moral obligation to meet the standards set by their health authority regarding person-centred care; therefore, finances should not curtail efforts to care. Another manager added, ‘I think sometimes just expressing the interest in finding out, I think it makes a person feel valued’. Furthermore, nothing that the SELFY had inspired was costly; the most expensive outlay was a BINGO game that costs under $40 CDN. Further, if an expensive request was made, management was ready to think ‘outside of the box’ to try to make it happen. In a manager’s words:

Could we fly somebody across the country to be with somebody? Not on our budget. But we also have supports in the [local] Hospice Society. That’s not going to be with every service, or even every palliative care service or even every other healthcare setting; that’s not always possible. But there’s usually foundations or whatnot where you can tap into some things that may be a little bit ‘outside the box’. But it has never been a barrier for us that I can think of. Most things don’t really cost us money. [We ask:] ‘What’s really important to you?’ [The patient answers:] ‘My dog’. So, we will make sure that the dog is here.

Across all the discussions, reference was made to the importance of ‘the little things’. Asking a patient about their favourite foods (instead of a clinical question: ‘Do you have nausea?’), reassuring a patient that their cat could come visit, and having a specific hand cream in the patient’s room when they arrived were all examples provided by the participants about how ‘the little things’ were truly ‘big things’ in ensuring person-centred care. These ‘little things’ emerged as key components of the ‘secret sauce’ of the SELFY’s success in achieving person-centred care.

These ‘little things’ continue until the patient’s death, as this clinician discussion recounted:

P1: And if you go to [the SELFY] and it says well, their favorite drink was ginger ale. Well maybe I can change up the mouth care a little bit and do it with ginger ale. Now, whether or not they’re getting that, like, who knows? But you’re providing that for them, right? So, it’s even in their actively dying phase.

P2: Even doing that would bring comfort to the family, knowing that you’ve gone that extra step to do that for them.

P1: It would. That’s right. And in turn, they’re looking at it as something they’re done for them. Like they’ve, as a unit, made the decision to come here. And, you know, through us, they are providing care for their loved one.

A tool for ‘teachable moments’

Particularly in the discussions with volunteers, a number of ‘teachable moments’ emerged from the discussions about what the SELFY brought to patient care. The form is purposeful in attending to cultural specificities, for example by asking questions about favourite holidays, foods, and religion. The volunteers saw these specificities as opportunities to learn more about the increasingly diverse population in their region, knowledge of which would help them with future patients. A specific example was knowledge about the local Indigenous First Nation. While the Hospice has welcomed many Mi’kmaq patients and families, at the time, no staff or volunteers identified as Indigenous. Learning the traditions around common sacred rituals was seen as a valuable opportunity. Additionally, ethnocultural diversity is steadily increasing in the region. Volunteers were especially open to the idea that educational sessions could help ensure they were well-prepared to engage with diverse populations. A volunteer also brought up the opportunity to augment both the form and their learning about sexuality and gender identity.

The place of families in person-centred care

The patient’s circle of care explicitly includes their chosen family, and there are facilities specifically for families to sleep, eat, and shower. One of the managers recounted the Hospice’s philosophy: ‘It’s not just about the persons, it’s about the family [. . .] The whole unit’. A clinician recalled a comment from a family member who said: ‘I feel that this is the first time that not only is my parent being taken care of, but we are too’. A spouse told us: ‘I felt that in addition to my spouse, you know, the emotional support afforded me here was wonderful, just wonderful. It’s like the song: “If you come broken, people help you”’.

Staff and volunteers were not uniform in how well the SELFY captures the roles and needs of families, however. One clinician said it was through conversations in patients’ rooms that they came to know the family; further, they felt it was not necessarily the job of the SELFY to solicit family information. Others agreed, saying that the ‘[the SELFY] can’t do everything’. Concerns for family bereavement also fell outside of the SELFY. In contrast, other staff felt that some roles (e.g. social work and spiritual care) could be enhanced if the form included more family information. Further, soliciting names of the family members they would likely meet during patient visits was suggested as a helpful addition, as was better understanding any tensions with or estrangements from specific family members. As one clinician said, ‘[this information could] give me the direction not to go with the patient’. Another clinician agreed, saying it would provide ‘a little yellow light’ of caution to put in their ‘back pocket to work into a future conversation’. Also, as a patient gets closer to death, as one participant stated, ‘Once a patient is unresponsive. . .my focus shifts from the patient to the family members. So, to know a little bit about them would be helpful’. Volunteers also felt that more family information could be helpful. Knowing whether the patient did not have children, for example, could help direct them away from certain topics and prevent awkward moments.

Updating a ‘live’ document

The information captured on the form will only be as good as can be captured from a conversation with a sick patient and their chosen family member. As one clinician reminded, the family member might not be ‘the great family historian’ or may be ‘a really shy person’. Further, as death approaches, patient preferences can change subtly or drastically. A simple change could be preferring ginger ale to cola; a more existential change might be changes from finding joy ‘walking by the ocean’ to ‘moving my bed into the garden on sunny days’.

Most clinical staff felt at ease editing the form directly; however, some did not know they could write on it. Volunteers were the least likely to write on the form. Our discussions uncovered that no one person was responsible for ensuring that edits on one version of the paper-based form were then shared reliably across other copies. With electronic records, updating the form would be more straightforward. It also emerged that family members might want to make updates; one family member mentioned that they had not initially understood the utility of the form and regretted not elaborating on some answers.