Palliative care nurse champions’ views on their role and impact: a qualitative interview study among hospital and home care nurses

Two hospitals expressed their interest in participating in this study. In order to gain insight into the role of palliative care nurse champions in a diversity of care settings, we also asked other care organisations to participate. These care organisations differ in the type of care provided (only home care or also residential care), size of the work area and organisational model. Convenience sampling was used in different care settings that were interested in participating in the study. Participants were nurses who had the role of palliative care nurse champion within an inpatient ward in one of two hospitals or one of four care organisations, one organisation only providing home care, the other three also providing care in care homes and nursing homes. All palliative care nurse champions in the two hospitals (n = 9 and 12, respectively) were approached directly by email, palliative care nurse champions in the four care organisations were invited by local contact persons (i.e. n = 1 to 4 nurse champions per organisation). Sixteen palliative care nurse champions agreed to be interviewed: five nurses working in one hospital and five in the other hospital, and six home care nurses working in four different care organisations. The interviews were conducted in participants’ workplace. Interviews in hospital lasted an average of 30 min and in home care organisations an average of 45–60 min. The palliative care nurse champions were all Registered Nurses, but had varying experience in palliative care. Seven nurse champions had completed extra training in palliative care at ISCED level 4 or 5. In the Netherlands, for the nursing specialty palliative care this is usually a 1 year course. In this course nurses learn to adjust interventions to the palliative care needs of patients and their loved ones; to provide information and advice to patients on a wide range of questions and uncertainties, and to deal with complex situations; to collaborate in a multidisciplinary team and provide advice to colleagues on complex care needs. Once nurses have completed this course they may call themselves palliative care nurses, although this is not a formal qualification in the Netherlands. Further, three nurses had completed a basic training in palliative care and six nurses had not followed extra training in palliative care (Table 1).

The interviews were conducted from May until November 2018. We developed an original topic guide to structure the interviews. Topics included participants’ perspectives on their role and responsibilities as palliative care nurse champion, how they perceived their collaboration with the palliative care expert team and their experiences with inter-organisational collaboration in palliative care (see Supplementary file 1). Data were collected by ME.

Interviews were audio-recorded and transcribed. During and after the interview also field notes were made. The data were analysed using the principles of the Framework approach, a modified form of thematic analysis that is designed to provide a systematic and transparent approach to data management and analysis [29]. Line-by-line coding of each transcript was completed using the software program NVivo 12. Codes were grouped in categories and underlying themes. We used a deductive approach, using an initial framework drawing on existing literature about the role of palliative care nurse champions. This initial framework consisted of the following elements: role in clinical practice, role in relation to the palliative care expert team, role in inter-organisational collaboration. The process of constant comparison was undertaken so that the early stages of analysis informed subsequent data collection and we would find additional information throughout the research process where possible. For example, we coded answers referring to their care for patients having palliative care needs in their ward. Subsequently, we identified subthemes related to their role in clinical care and from these subthemes we moved to elements of their role. The field notes were used as supporting material for the analysis.

We aimed for thematic saturation which was determined by consensus of the researchers that no new themes in relation to the research questions had emerged in the last interviews. Special attention was paid to commonalities and differences between individual interviews and across settings. To enhance the trustworthiness and credibility of the data analysis, we used member checking, reflexivity and audit trail. Member checking was done by sending each respondent a summary of the transcript and asking whether this summary properly reflected the interview. Respondents’ feedback was added to the transcript. Reflexivity involved the use of memo writing and regular meetings with the research team to discuss the analysis. Audit trail involved extensive documentation of the research process.

Further, the research team all have experience in providing palliative care and/or doing research in palliative care. ME is a nurse non-practising, MSc and PhD student. LvZ is (practising) MD and professor in hospital palliative care, AvdA is MSc and junior researcher in palliative care, AvdH is MD and professor of medical care and decision making at the end of life. The researchers were and are not affiliated to any of the hospitals or care organisations involved and did not know the nurses who were approached. For reporting our findings we followed the COREQ guidelines [30].

When they were asked about their role as palliative care nurse champion, hospital nurses reported varying numbers of patients who need palliative care in their ward. Numbers ranged from a small minority (cardiovascular ward) to about half of the patients (oncology/hematology ward), to almost all patients (pulmonology ward). They also reported that, as far as they knew, their role of palliative care nurse champion is not formalised. In general they described their role as being responsible for keeping their knowledge on palliative care up-to-date and informing colleagues in their ward about new insights and developments. According to most hospital nurses their role was either on hold or interwoven with their regular work as a nurse.

“Because this is a lung oncology ward, you don’t really think about palliative care, because almost all we do is palliative care. If there is a really difficult case, and we start talking about it, it often turns out that we are already doing very well. When a physician wants to give a patient some chemo, we often say: that does not seem the right thing for this patient. Nurses are more often consulted. Physicians trust us in these things.” (Hospital nurse 2, trained in palliative care on International Standard Classification of Education (ISCED) level 5).

Most hospital nurses consider palliative care to be one of many areas for which nurse champions are appointed, and they could not indicate when they had actually started being a palliative care nurse champion. They get no extra hours or salary for activities related to this role. Hospital nurses who had had training in palliative care at ISCED level 4 or 5 (three out of five in hospital one, two out of five in hospital two) reported that they felt they could do much more, for example update guidelines or provide training. Reasons for not being able to do so included a high workload and insufficient appreciation of their palliative care expertise in the hospital. Some also reported that they miss the support of the palliative care expert team.

The views of home care nurses about which patients in their practice need palliative care vary somewhat. Some nurses mentioned patients with a life expectancy shorter than 3 months, others suggested that patients with a longer life expectancy or patients who are in a stable phase of their illness (e.g. Alzheimer’s disease) may also need palliative care. As a result, the numbers of patients needing palliative care in their clinical practice ranged from one patient in 2 months to at least one patient each week.

Three out of six home care nurses reported that there is some kind of formal role description for palliative care nurse champions in their organisation and that they have a few hours per week for activities related to this role. The other home care nurses had no clear role description, but felt that their role is clear to themselves and their colleagues.

Home care nurses more than hospital nurses tended to report that they consciously chose palliative care as their focus, sometimes because of personal experiences. Two out of six home care nurses did a special training in palliative care at ISCED level 4 or 5. Sharing knowledge about palliative care within the organisation is considered a very important aspect of their task as nurse champion by most home care nurses. They also see a pioneering role for themselves. They could often clearly indicate when they had started and describe their tasks as nurse champion. These tasks included visiting all patients in the palliative or terminal phase of their illness, having a coaching role towards colleagues, participating in multidisciplinary home care meetings, visiting general practitioners to promote palliative care, providing training to colleagues. Unlike hospital nurses most home care nurses feel appreciated in their role by colleagues and by their organisation.

“I am starting a new working group that will meet every six weeks, to improve collaboration with, for example, [name of local hospital]. And discuss information from within the network [local network palliative care] and other organisations. To distribute information and to ensure that knowledge reaches the right people. These things must come to life now.” (Home care nurse 1, did e-learning and several courses in palliative care).

All hospital nurses are familiar with the palliative care expert team and most consider the team easily accessible. In one hospital four out of five nurses indicated that colleagues in their ward seldom ask the expert team for advice, because they think that they have sufficient palliative care expertise themselves.

“We have the palliative care expert team to fall back on, to ask for advice. We are used to doing it ourselves, of course.” (Hospital nurse 2, trained in palliative care on ISCED level 5).

In the other hospital, most nurses indicated that the palliative care expert team is regularly consulted. Some nurses indicated that they would appreciate more collaboration with the palliative care expert team, but that they were awaiting an initiative from the team.

“I miss some kind of connection between the palliative care team and the ward. Not when it comes to patient care. [ ….] But in addition to discussing a specific patient I would like to talk a bit more about education, how we are doing, do we need training [...]. Especially when it concerns geriatric patients.” (Hospital nurse 6, no extra training in palliative care).

Most home care nurses are familiar with the regional palliative care expert team, but they seldom ask the team for advice. They did not express a need for more collaboration, although some think that adding a home care nurse to the palliative care expert team could have added value.

Hospital nurses collaborate with many different care providers within the hospital. Almost all hospital nurses reported that they seldom collaborate with care providers outside the hospital. Such collaboration may involve visiting symposia or transfer of information in patient care. Hospital nurses indicated that they do not have time for more collaboration and do not see the added value. They assume that their manager or the palliative care expert team will address potential problems in such collaboration. Almost all hospital nurses assessed the quality of the handover of information upon the transfer of patients with a limited life expectancy as adequate and complete.

“I think that transfer nurses [in the hospital] are already doing a lot to ensure that people can go home well, by ensuring that care at home is properly arranged. And also the materials needed. And the rest is actually up to us. I believe that where there is no care at home and people are regularly admitted [to hospital], I often aim for continuity home visits. So that at least someone occasionally visits those people [In the Netherlands, in some regions, patients with a limited life-expectancy who not yet need home care, may receive ‘continuity home visits’ from trained home care nurses. These nurses monitor how the patient is doing and, if necessary, organise home care or other care in consultation with the patient].” (Hospital nurse 7, trained in palliative care on ISCED level 5).

Home care nurses reported to collaborate with many other care providers: general practitioners (GPs), nursing specialists, physiotherapists, dieticians, occupational therapists, mental healthcare  providers, informal care providers. However, their collaboration with hospital staff is limited.

“We have no consultations with the hospital. We sometimes go to the hospital to see if people are really terminal. But it is unclear how should we register that. Then it seems I’m even more unproductive [In the Netherlands, a visit to the hospital of a patient who is not (yet) registered for home care is not eligible for reimbursement].” (Home care nurse 5, trained in palliative care on ISCED level 5).

The organisation and financing of care do not facilitate more collaboration. Further, home care nurses suggest that care providers in the hospital have a perspective on palliative care that is completely different from their own. They think that in the home care situation nurses look at the whole person and environment and adapt care to the needs of the patient, whereas in hospital care is determined by care providers.

Home care nurses reported that they often only receive a standard paper or digital handover from the hospital for patients who are discharged, and that they often miss information about patients’ diagnosis, prognosis, treatment plan and patients’ specific care needs. They have adapted to inadequate information handovers and often ask information they need from patients and their relatives themselves. Only one of them searched actively for collaboration with the hospital.

“Next week I will for the first time attend a multidisciplinary meeting in [name of local hospital]. I have invited myself for this and had to insist for six weeks. It concerns a very complex patient. Otherwise the hospital will simply announce that or ask if we can take over care for this patient. I think that during the intake collaboration is already possible.” (Home care nurse 1, did e-learning and several courses in palliative care).

A few hospital nurses indicated that they also contribute to the transfer of medical information: they encourage physicians to call the patient’s general practitioner to inform them about the patient, especially in case of a discharge just before the weekend.

A strength of our study is that the qualitative data obtained provide a valuable insight into the views of palliative care nurse champions on their role. Trustworthiness of the findings is increased by member’s check and reflexivity. The fact that our questions were somewhat general and that especially in the hospitals the time available for the interviews was often limited, leaving little time for asking in-depth questions, can be considered a limitation. Therefore, we cannot be sure that saturation of the information about our research questions was reached. In order to justify the number of respondents, we also assessed the information power of the interviews conducted. With regard to the items that in interaction determine the information power of a study sample [42], we assessed 1. our study aim as rather narrow; 2. the sample as highly specific; 3. the theoretical background about the role of palliative care nurse champions as establishing foundation for the findings; 4. the focus of the interviews as rather clear; 5. the analysis strategy moving from within-case analysis to gradually more cross-case analysis. As we did an exploratory study, the information power seems adequate [42] to offer new insights about the role of palliative care nurse champions in hospital wards and home care. Finally, caution is advised regarding transferability of our findings to other parts of the Netherlands and Europe because of differences in health care systems and in the training of nurses in the field of palliative care.