District nurses experiences in providing terminal care in rural and more urban districts. A qualitative study from the Faroe Islands

Abstract

Objective

To explore district nurses’ experiences in providing terminal care to patients and their families until death in a private home setting.

Design, setting and subjects

Qualitative study. Data derived from focus group discussions with primary nurses in The Faroe Islands.

Results

Four themes were identified: ‘Challenges in providing terminal care’, ‘The importance of supporting families’, ‘Collaborative challenges in terminal care’ and ‘Differences between rural districts and urban districts’. The nurses felt that terminal care could be exhausting, but they also felt the task rewarding. Involving the family was experienced as a prerequisite for making home death possible. Good collaboration with the local GPs was crucial, and support from a palliative care team was experienced as helpful. They pointed out that changes of GP and the limited services from the palliative care team were challenging. Structural and economic conditions differed between urban and rural districts, which meant that the rural districts needed to make private arrangements regarding care during night hours, while the urban districts had care services around the clock.

Conclusion

Our findings underline the complexity of terminal care. The nurses felt exhausted yet rewarded from being able to fulfil a patient’s wish to die at home. Experience and intuition guided their practice. They emphasised that good collaboration with the GPs, the palliative care team and the families was important. Establishing an outgoing function for the palliative care team to support the nurses and the families would increase the scope for home deaths. Working conditions differed between rural and urban districts.

KEY POINTS

• District nurses are key providers of care for people dying in a home care setting.

• Collaboration with family is essential for making home death possible.

• Taking care of dying patients is experienced as exhausting but also meaningful.

• There is a need for an outgoing palliative care team to include all patients regardless of disease.

Keywords:

• Terminal care
• home death
• small scale society
• phenomenology
• focus group

Most patients with a life-limiting illness wish to die at home, but for various reasons, this is not always feasible [1–3]. In the Faroe Islands, an archipelago in the North Atlantic, the number of home deaths has been stable in recent years, varying between 11 and 13% [4]. This is comparable with countries like Australia, where 14% die at home [5]. However, in the United Kingdom [6] and Denmark [7], the percentage of home deaths is approximately 22%. The literature distinguishes between planned and unplanned death at home, e.g. Kjellstadli [8] found that in Norway 41.9% of home deaths were potentially planned, that is if a person had domiciliary care and a cause of death was among the most likely diagnoses to receive palliative care. In the Faroe Islands, no study on planned home deaths has been conducted. This study intended to explore only planned home death.

District nurses are core providers of end-of-life care at home, and they have an essential role in enabling patients to die at home [9,10]. They play a key role in the assessment, coordination, and delivery of care in the community, significantly reducing unnecessary hospital admissions while enabling individuals to remain at home [11]. Apart from providing end-of-life care, district nurses have a broad responsibility, including activities ranging from preventive health work to end-of-life care with patients of all ages [12].

Palliative care is often complex and time-consuming, and involves collaboration with other professions [13]. However, studies have shown that nurses sometimes feel that palliative care leads to less time and effort being spent on non-palliative patients [14]. Patients’ emotional needs were often unmet when time was lacking and physical needs occupied most of their time. Moreover, district nurses often feel they lack the knowledge to provide quality palliative care [13,15]. Becqué [16] stated that specialized palliative care nurses provided patients and families with more complex and emotional support, whereas district nurses provided more physical care. Despite this, a recent literature review showed that nurses feel rewarded taking care of a patient at the end of their life. This manifested itself in positive emotions related to increased job satisfaction and professional fulfilment [17]. However, as identified by Seow & Bainbridge [18], there are essential components which are necessary for providing quality palliative care in the home. These components are good teamwork within and across settings, adequate pain control and symptom management, and an overall holistic approach to care. Interprofessional teamwork was essential, as well as access to a care team member 24/7 and education and guidance to patients and families on how the disease will progress.

Beside the patients, the district nurses are responsible for collaboration with the patient’s family, as family members are vital in supporting patients in dying at home [19,20]. A review conducted by Morris [21] showed that family members taking care of a patient in the terminal phase often report more unmet needs than the dying person him- or herself. The burden increases in the last weeks or days of the patient’s life when they are more dependent and bedridden and need more care [22]. In a mixed-method study from the Netherlands, de Korte-Verhoef [23] found that the percentage of family caregivers experiencing a heavy to severe burden increased from 32% in the second/third month before death to 66% in the last week of life. This is one of the reasons why many patients are hospitalized in the terminal phase, which may last from days to weeks [24], and they end up dying in hospital [25,26].

The establishment of specialized palliative care teams to support professionals, patients at home, and their families has increased the number of people able to die at home [27–29].

Also access to home care around the clock has been shown to be an essential factor for patients to achieve a home death. However, this is not always possible, especially in rural areas [30–33]. In the Faroe Islands, home care is structured around eight districts. In this study we involve both urban districts and rural districts.

Little is known about how district nurses in the Faroe Islands experience caring for seriously ill patients at home and supporting their families until death. A recent Faroese study on family caregivers supporting a relative to die at home showed that the family caregivers often became core providers of care. Beside support from district nurses, the caregivers were supported by other family members, some of whom had a professional healthcare background. Some of the family caregivers also had a healthcare background themselves [22].

Because of district nurses’ central role in providing terminal care at home, exploring their experiences can contribute to increased understanding of the complexity of terminal care at home and point to possible improvements to benefit the patient, their family, and the nurses themselves. This study therefore aimed to explore district nurses’ experiences in providing terminal care to patients and their families until death in a private home setting in rural and more urban districts in the Faroe Islands.

Context

The Faroe Islands consist of 18 islands, 17 of which are inhabited. With a population of around 54,000, the Faroe Islands must be regarded as a small-scale society characterized by especially close relationships [34]. Since 2015, care for older people, including home care, has been a municipal responsibility and task. For financial and organizational reasons, a total of 29 municipalities were organized into eight home care districts, which vary in size from the smallest district with 1.291 citizens to the largest district, with 22.350 citizens. In the primary sector, general palliative care is a part of the GPs work and includes patients regardless of disease. Some nursing homes have a room for patients with palliative needs, and there is a respite care home in the capital with two rooms available. In the home care, it is the district nurse who coordinates the palliative care and administrates the treatment, in collaboration with the GP, physiotherapists, occupational therapists, and home assistants. It varies between the GP, the palliative care team, and a specialist in a specific medical field, who coordinates the palliative course [10]. In the most rural districts, there are no services around the clock. Out-of-hours nurses and patients can contact the doctor on call, and in most districts, the nurses can contact the GP [22].

In the secondary sector, general palliative care is conducted in most hospital departments. Specialized palliative care is only provided at the university hospital in the capital, where the only palliative care team is located. However, the team is not multidisciplinary as it only comprises one physician and two nurses and has no outgoing function. It is solely involved in primary care for advising by phone as needed. Apart from this, there is a kind of palliative unit that patients and families can turn to outside opening hours. The unit is in a medical department with eight subspecialties. Two rooms are earmarked for two terminal patients at a time. The team and the unit only include patients with cancer [10,35].

The Faroese healthcare system is financed through taxes and provides free access to healthcare services. Although officially conforming to the Scandinavian welfare model, families still carry much of the responsibility for caring for the elderly [36] and play an essential role as networks for persons in need of support [37]. An earlier study from the Faroe Islands, investigating older adults’ transition to widowhood, showed that the family was the greatest source of support both before and after a spouse’s death [38].

This might explain why there are only recommendations and no actual executive order concerning palliative care. The recommendations do not support establishing hospices on the islands. Instead, and for economic reasons, an expansion of home care services is recommended [10,39]. Despite these recommendations, there has been no increase in the number of home deaths in the last few years [4]. In 2020, 347 people died in the Faroe Islands, 41 of them at home [40].

Materials and methods

Describing and understanding district nurses’ experience of terminal care requires a qualitative approach. We decided to use descriptive phenomenology, as suggested by Giorgi, because this approach offers a non-interpretive method focusing on uncovering the meaning of experiences from the perspective of humans, which was our intention [41]. The concept of ‘scientific reduction’ guided our data collection. This meant setting aside one’s prior knowledge and experience of the phenomenon in order to perceive it as experienced by the participants from within their life-world perspective [42].

We chose focus groups as a research method, where data is produced via group interaction around a topic determined by the researcher. The different participants’ reflections on each other’s experiences and understanding in the group processes provides knowledge about the complexities of meaning formation and social practices. The participants can ask about each other’s statements and comment on each other’s experiences and understanding [43]. We drew up an interview guide based on open questions on the subject, to stimulate participant discussion [43]. The questions were based on the themes: Terminal care, home death, professional and relative collaboration, and conditions to provide terminal care. Two focus groups were conducted in November 2022, which took place at the university after working hours. One nurse participated in one of the focus groups via Zoom for practical reasons. Both interviews lasted approximately 90 min. The first author conducted the interviews in Faroese, and interview notes were made after each session, mainly to describe the atmosphere during the interviews.

Participants

As the municipalities vary in size, population and economy, the home care districts vary across the municipalities. The rural districts are characterized by small and remote villages, while the urban districts encompass bigger towns. To reflect this variation, participants were recruited from both rural and urban districts. Leaders in six home care districts were contacted by the first author and informed about the study. They were asked to take on the gatekeeper role, inviting district nurses with a minimum of one year’s experience of caregiving to seriously ill patients to participate in the study. It was important to emphasize, that the intention was to explore the nurses’ experiences and not their theoretical knowledge, because the first author has experience as a teacher in nursing, which can influence the nurses’ choice to participate. If the district nurses consented to participate, they could contact the first author, or the first author could contact them. They were given information about the study and asked to sign a consent letter. Eight female nurses from five home care districts were included in the study, four in each focus group. According to Halkier [43] groups of between three to twelve participants have proven to be successful. However, as emphasised by Malterud [44] the more relevant information the participants hold, the lower number of participants is needed. All the participants in this study had years of experience working with terminal care, which in this study, ensured a sufficient ‘information power’ [44]. The two group interviews provided rich descriptions of the phenomenon home death and terminal care. Additional group interviews were therefore not expected to bring further knowledge about the phenomenon. We chose to divide the participants into two groups, one group with participants from urban districts and one group from rural districts, because we expected working conditions to differ for nurses in urban and rural districts i.e. services around the clock are most available in urban districts. See Tables 1 and 2.

Table 1. Overview of participants (urban districts– all names have been changed).

Name	Age	Years of home care experiences	Home care service around the clock
Tóra	50–55	5–10	x
Hanna	55–60	15–20	x
Anna	50–55	5–10	x
Krista	50–55	5–10	x

Table 2. Overview of participants (rural districts– all names have been changed).

Name	Age	Years of home care experiences	Home care service around the clock
Conny	60–65	15–20	x
Siri	40–45	5–10
Malan	45–50	5–10	x
Lena	40–45	5–10

Ethical considerations

Ethical guidelines on nursing research in the Nordic countries [45] guided the research process. Apart from this, specific ethical considerations concerning research in small island communities guided our research process. According to Hayfield [46] it is almost impossible to avoid multiple relations in many small island communities, and ignoring this reality could lead to unethical research decisions. The participants were assured of anonymity and confidentiality and informed of their right to withdraw for any reason. Written informed consent was obtained from all participants. According to the Research Ethics Board in the Faroe Islands, no further ethical approval was necessary. Data were stored and processed in conformity with Faroese Data Protection Authority regulations [47].

Data analysis

The interviews were recorded and transcribed verbatim by the first author. All places, names and identifiable information were anonymized during transcription. We used the six-phase thematic analysis by Braun and Clarke [48]. In the first phase, the interview transcripts were carefully read. In the second phase, data were coded by the first author and discussed with the second and third authors, who are trained in qualitative research, and the first author is a PhD student with a background in nursing. In the third phase, we searched for themes by sorting the different codes into potential data-driven themes. In the fourth phase, we reviewed the themes by reading all the coded data extracts to see whether they formed a coherent pattern and moved some of the coded data to a more appropriate theme. We also made some small adjustments in the naming of the themes. In the fifth phase, we defined and named themes by looking more deeply into the essence of every theme and going back and forth to the collated data. We also considered how each theme was related to the others. Phase six involved the final analysis and presentation of the findings in the next section.

Results

Theme 1: Challenges in providing terminal care

Taking care of a terminally ill patient who wanted to die at home, and supporting the family in providing daily care to their loved one, required multiple decisions and actions.

The group discussions therefore touched on whether written procedures could be a helpful tool for the nurses in their daily work. However, there was no agreement on the benefit of having such procedures.

Anna: I feel that if we have a procedure, then we focus on the procedure rather than the

Hanna: person…I do not see that we need a procedure.

Tóra: there are procedures, perhaps only in our heads (laughs).

Krista: It could be good to have something…perhaps that the family needs to help with the patient… well, about what conditions must be present for us to provide care. (Focus group – urban)

The nurses seemed concerned that the procedures could risk taking the focus away from the individual patient’s needs, and saying the procedures are in ‘our heads’ refers to the nurses having years of experience, where theory is integrated into their work. However, there might be situations where, as Krista suggests, procedures could help in balancing expectations as to how daily tasks should be distributed between themselves and the family members providing care.

None of the participants had any special training in palliative care, and they all agreed that they received to little training in palliative care. Some of them expressed a wish to improve their skills with further education and an opportunity to visit a hospice for inspiration. Hanna: ‘It would be good to have regular training in palliative care, because we spend a lot of time providing palliative care. It is a deficiency’ (Focus group – urban). Although the nurses appear to be ‘experts’, in the meaning of experience, they do not necessarily perceive themselves as such. They express a need for more education and training.

Providing terminal care requires the nurses to make an extra effort. It seemed to be an emotional motivation for the nurses to do everything in their power to make the end of life for the patient and his or her family as good as possible, even if it went into their free time. They found it to be of great value and an honour to be able to fulfil a patient’s wish to die at home.

Malan: I don’t know why, but when I am in this situation, I try to do everything I can to make it as good as possible. It calls on something inside of me.

Conny: It is so intense; you only get one chance to do things well…so I get very tired…but I want to do it. (Focus group – rural)

Terminal care can be exhausting and also, as Conny mentioned, very intense, yet the possibility that each visit can be the last one appears to motivate the nurses to make an extra effort. Apart from talking to each other in their spare time, the emotional workload led to a discussion on supervision as a way to unload and recharge. However, it was only in the urban districts, that the nurses received supervision. Although the nurses in rural districts had asked for supervision, this was not provided for economic reasons.

Theme 2: the importance of supporting families

The participants all thought that, for a patient to be able to die at home, there must be family members willing to take care of the patient around the clock. In the terminal phase, the patient becomes more and more dependent and is often bedridden with a constant need for care, which puts a great responsibility on the family. The nurses said that not all families have the necessary resources to manage this responsibility. The family needs to be ‘well-functioning.’ They might have the best intentions to meet the wishes of their dying relative, but there is a risk that ‘they might succumb to the pressure’ (Malan). (Focus group – rural)

One option for supporting the family is to offer the patient respite care outside the home.

Hanna: One thing is what they [the family] wish, but they don’t quite know what they have agreed to… then it is good to be able to say that maybe the patient could be hospitalized for a few days, and then it can be called pain control so the family can regain strength. (Focus group – urban)

It is not clear whether Hanna meant that families were not well enough informed about what to expect or that courses progress in many different and unpredictable ways. However, the nurses expressed that they need to find a balance between supporting the families in taking care of a dying relative and preventing the family from suffering a physical and/or mental breakdown. By proposing up a temporary hospitalization as a solution, Hanna suggests one way of coping with families who need ‘time out.’ As mentioned in the context section, there are a few alternative options to hospitalisation. For instance, a respite care home in the capital or a room in a nursing home. The nurses discussed the possibility of establishing a hospice in their district, but all agreed that the number of palliative patients was too small to form the basis for this.

The nurses brought up the subject of how to fulfil the patient’s last wish about where to die. Both the nurses and the GPs try to bring up the subject but do not always succeed in doing so. One consequence might be that the patient ends up dying in the hospital, because nothing is written down. This made the nurses call for a formal agreement to prevent patients being transferred a long way to the hospital short before death, which they found undignifying.

Another issue was how to prepare the family for the final death process. Everybody found this challenging.

Tóra: I think it is difficult to start talking about this with the patient…We sometimes talk about having a brochure to prepare everyone for the death.

Anna: We have a brochure, but we need to find out when it is appropriate to give it to them because it reveals everything. Otherwise, we take the view that ‘while there is life there is hope’. (Focus group – urban)

The nurses appear to struggle to find solutions for when to inform about the impending death process. Although they did not elaborate on the meaning of hope, it seems that talking about death is perceived negatively compared with hope.

Theme 3: Collaborative challenges in terminal care

Being a district nurse providing terminal care is generally a lonely role to take. Although the nurses can contact the GP at night, they hesitate to do so, as they do not wish to disturb the GP. Instead, they make heavy demands on themselves to manage the task. In continuation of this the nurses also talked about their collaboration with the home assistant when providing physical care if needed.

Siri: It is a very heavy task to care for a dying patient at home. I think it is often a lonely task, because we are often alone on duty…and we have no one to spar with…If the patients have a lot of physical needs, we have a home assistant to help us. That helps…even though the nurse has the responsibility. (Focus group – rural)

It is part of the district nurse’s role mostly to work alone in the patient’s home. However, when the patient is terminally ill, the above quotation shows, that caring for a dying person is a complex task, that requires good collaboration and someone to spar with. Complex care requires interdisciplinary collaboration, but as it appears both in the quote above and in the following discussion about the palliative care team, there are challenges regarding interdisciplinary collaboration outside daytime hours.

During the group discussions on challenges connected to this need for sparing or support, attention turned to the palliative care team at the hospital. Experiences with the team varied but the nurses all agreed that there was much that could be improved. Especially, as mentioned earlier, the palliative care team does not have an outgoing function, opening hours are limited and, in particular, the team only provides support for patients with cancer.

Malan: If they [patient and family] have built a relationship with the palliative care team, it works fine for us to continue to collaborate with the team…but some people never establish a relationship with the palliative care team. We often feel the GP is closer because he sometimes visits the homes and can see the patient with his own eyes. (Focus group – rural)

Anna: We have other patients who are just as sick and have the same need for help e.g. patients with MND (motor neurone disease), patients with COPD (chronic obstructive pulmonary disease). They are just as sick, but the help is not as good. A patient with MND does not have a team we can call. They are not associated with a specific hospital department that we can phone. (Focus group – urban)

Malan calls for the palliative care team to conduct home visits, as she experiences a need for the team to establish a relationship in the homes, to have that closeness with patients and their families, which can not be achieved through telephone exclusively. In the excerpt above, Anna seemed concerned about the situation of patients suffering from other fatal diseases than cancer who do not receive any support from the team or any hospital department when they reach the terminal stage.

The participants all agreed that their greatest reliance was on the GPs in the district. The patients in terminal phase often need medical adjustment and the complexity of terminal care often requires the nurses to contact the GP. However, this collaboration with the GPs could also be challenging, as they were not always available out-of-ours, and there had been periods with no GP and periods with substitutes. The nurses can contact the doctor on call, but most of them had experienced waiting in line for up to 2 h. When the GP is not available, the nurses can use the palliative care team or the palliative unit. It is therefore mainly the patients with other diseases than cancer who are affected by the doctor on call service. All participants agreed that, as terminal care is complex and the nurses often must act quickly, the doctor on call is not an ideal resource. In this connection Siri mentioned a solution that she and her colleagues had discussed: ‘…it would be good to have a direct line to the doctor on call and not wait in line with all the others.’ (Focus group – rural)

Theme 4. Differences between rural districts and urban districts

In the findings we noticed some differences between providing terminal care in rural districts and urban districts. One of the differences is how the nurses approach the patient and family when building a relationship:

Malan: We make an effort to visit the patient early…even if they have not contacted us, we visit to establish a good relationship with the patient and his family.

Conny: It is a benefit that we are so few nurses that when they call us, they do not need to tell their story repeatedly. (Focus group – rural)

Krista: We try to limit the number of nurses to maintain continuity, because if we have not been in a home before, we do not know them. (Focus group – urban)

Although terminal care is time-consuming, it is notable that the nurses in rural districts, Malan and Conny, make early home visits without the patient being referred to them. This could be because these nurses provide care in small communities where everyone knows each other and knows if someone is seriously ill at home. However, creating a good relationship with the patient and his family is vital for the nurses. The nurses from the urban districts do not mention early visits, but as Krista says, they try to limit the number of nurses attending the terminal patients.

In the urban districts the nurses can visit patients up to eight times a day if needed. In two of the rural districts there is no formal access to nursing care at night, but the nurses make individual arrangements in collaboration with the family and the patient. Notably, the nurses did not discuss the limited access to home care in the rural districts, although they agreed that access around the clock is essential to enabling a home death.

In this connection, the nurses discussed the support from family members with a professional healthcare background. How much these family members are involved may vary. The nurses from the rural districts regard the qualified family members as an extra professional support, whereas the nurses from the urban districts are more reserved. They sometimes find it challenging:

Siri: It would not have been possible to have the patient die at home without a qualified relative who could give injections at frequent intervals. (Focus group – rural)

Krista: It can also be complicated if they are responsible for an area, and we feel we are responsible for it.

Hanna: We cannot all talk with the palliative care team; we must each find our place. (Focus group – urban)

While a qualified family member in a rural district, as Siri mentions, can be crucial to whether a patient can die at home, the nurses from the urban districts, Krista and Hanna, do not mention family members with healthcare qualifications as an extra resource. This could be because the nurses in urban districts have resources to provide care for the patient around the clock. However, the nurses seem to agree on that at the very end of the trajectories most of the qualified family members hand over the care to the nurses. Lena: ‘If you have to be both a relative and a professional …in most cases it is too difficult and they choose to withdraw.’ (Focus group – rural)

Discussion

The purpose of this study was to explore nurses’ experiences in providing terminal care to patients and their families until death in a private home setting in the Faroe Islands. In the introduction and the section describing the Faroe Islands as context, we outlined the structural and cultural context to provide a backdrop for understanding the nurses’ working conditions and the importance of strong family ties that characterize Faroese culture.

Overall, our findings showed four main themes covering the nurses’ experiences in providing terminal care to patients at home. In this section, we discuss selected aspects in line with the results concerning terminal care, families, and collaboration.

The nurses in our study did not follow standard procedures nor did they have written guidelines to follow when providing terminal care. They worried that guidelines could take the focus away from the individual patient. Their attitudes correspond to findings from other studies. For example, Becqué [16] found that the nurses seem to rely on experience and intuition, and Henriksen [49] reported that some nurses even rejected the idea of terminal care being standardized. However, there is a risk that not all needs are met when guidelines are not used in practice [50]. One way of ensuring quality in terminal care could be to use guidelines as a supplement to holistic and person-centred care as suggested by Raunkiær and Mikkelsen [51].

The participants practised nursing based on experience and intuition. They did not have any special training in palliative care but nevertheless took on the key role of organizing terminal courses and ensuring collaboration with other professionals within the health care system. They did express a desire for more education but so far this has not been met. In the recommendations on palliation in the Faroe Islands handed down by the Minister of Health in 2019 was to enhance the skills of health-care providers. However, so far resources have not been allocated to the palliative care team, which was supposed to be responsible for providing training in palliative care [10]. According to The Danish Health Authorities [52], a bachelor’s degree in nursing is adequate to provide general palliative care. However, it is recommended that resource nurses with palliative education should be employed to support district nurses in providing palliative care. Currently, there are no nurses in the eight districts in the Faroe Islands with palliative education.

In many rural areas, the family is the core provider of support for people entering old age and needing support in daily living [33]. In the Faroe Islands, families still carry much responsibility for caring for the elderly [22,38,54] despite social, structural, and demographic changes over recent decades [36,53].

For families, taking care of a terminally ill relative at home, this also means being prepared for the inevitable death of their loved one. Joyce Travelbee, a nursing theorist, has argued that: ‘Hope is future-oriented. Without hope, there is no direction for lessening suffering’ and further, ‘It is the role of the nurse to assist the ill person to experience hope in order to cope with the stress of illness and suffering’ [55]. The nurses’ dilemma, caught between preparing the family and the patient for the terminal process while not taking away hope as a way for those involved to cope with stress and suffering, became evident during the interviews. The nurses found it difficult to start talking about the impending death of the patient and thereby taking away hope and producing a sense of hopelessness. Other studies have showed that this dilemma is common among nurses taking care of seriously ill patients [26,51] and raises the question whether the WHO definition of palliative care, to affirm life and see death as a normal process [56], reflects the reality in which faroe nurses without training in palliative care operate. Death is still a taboo in our society today, as argued by Jacobsen [57].

In the Faroe Islands, as in other western countries, the number of GPs employed on a permanent basis in small and more remote districts is limited [58,59]. The participating nurses in the rural districts experienced this as a great challenge. They depended on good collaboration with GPs and stressed the importance of the GP knowing the patient. Politically, there has been some focus on this problem and possible solutions, such as merging districts and providing health centres with more GPs in one place. The nurses all mentioned the benefits of collaboration with permanent GPs.

A recurring topic during the interviews was collaboration with the palliative care team. The nurses all agreed that when the patient was suffering from cancer, the team was very supportive. However, for patients with other diseases, support from the team was not possible and they had to depend on the GP in the district. Although several countries include non-malignant diagnoses in palliative care [60], these patients still account for the smallest share of palliative care [61,62]. Apart from a history grounded in cancer care, another argument seems to be the unpredictability of disease progression and the troublesome estimation of prognosis in non-malignant diseases [63].

We have mentioned the challenges from changing GPs in the rural districts. Another challenge appeared to be limited financial resources in the rural districts. The nurses in these districts were not offered any supervision even if they felt in need of this, and formalized care around the clock was not an option either. Instead, the nurses provided care as needed and made arrangements individually, the goal being to make the caregiving families and patients feel secure during the night too. Close relationships among people in rural areas [46] seem to make these arrangements viable. The question is whether these informal arrangements are sustainable in the future: all of the nurses participating in this study had been in primary care for years and had solid experience of terminal care. Although it is meaningful, they all agreed that terminal care is exhausting. Whether and how future nurses are prepared to work under conditions marked by limited financial resources in rural districts might be doubtful [64].

If we look through the lens of the Norwegian nurse Kari Martinsen, palliative care can be understood as ‘maintenance-oriented care’, where the goal not is to get well again, and the work is less specialized and prestigious in contrast to ‘result-oriented care’ where the goal is to get well again, and the work actually is specialized and prestigious [65]. The limited development of palliative care in the Faroe Islands over the past 20 years reflects a lack of priority given to maintenance-oriented care [10,40,66], and our results and discussion point to some conditions that need to be improved if terminal care as a part of palliative care in the Faroe Islands is to follow international standards [67], and the number of home deaths is to increase.

Strengths and limitations

This study is based on a limited number of participants, however having nurses from both rural and urban districts strengthened this study, as it reflects the experiences of district nurses providing terminal care across the home care system of the Faroe Islands. Although one of the inclusion criteria was that the nurses had to have at least one year of experience with terminal care, all participants had years of working experience in home care. We could have expressed a request for novices and more experienced nurses, as the nurses might think that only the experienced nurses in palliative care were applicable to participate. The study therefore includes a selected group of district nurses concerning death at home. However, the detailed description of the context, method and participants does make the transferability of this study to similar small-scale societies possible.

Reflections

From our common knowledge and experiences as researchers, teachers and nurses, the research team had some pre-understanding of the Faroese society, especially concerning the health care system, family structures and possible differences between home death in urban and rural areas. Still, we tried to explore experiences of the district nurses in an open-minded way by inviting the nurses to discuss the before mentioned broad themes of terminal care at home, in a safe and reflective manner among each other. The results may not be surprizing, but they – for the first time – document nurses’ experiences with terminal home care in the Faroe Islands.

Being a researcher in a small-scale society where everyone knows of each other, can be a challenge when recruiting participants, and conducting qualitative research. According to Kvale & Brinkmann [68] a familiarity between researcher and participant can make it difficult to maintain a professional distance. Living in a small island community, with multiple relations, where people are emplaced in family, kinship and social relations, where the public and private spheres are blended and oftentimes impossible to separate, calls for what Hayfield [46] has called relational ethics. Therefore, the first author was particularly aware that the participants read and understood the information before signing the consent.

Having participants from five of the eight districts necessitated an ongoing ethical alertness to protect their privacy. We therefore conducted a more extensive ‘data cleaning,’ to remove personal and demographic identifiers and even omitted some data [46].

Conclusion

Our findings underline the complexity of terminal care in a private home setting. The nurses expressed positive feelings such as being able to fulfil a patient’s wish to die at home, but also complained of exhaustion. Experience and intuition guided their caring practices, and they did not see the sense in using written procedures. They all emphasised the importance of good collaboration with the family, the GPs and the palliative care team. However, they underlined the need for the family to function well and have the necessary resources. With regard to collaboration with the GPs, they called for more permanently employed GPs because changes of GP often hindered adequate collaboration. Regarding the palliative care team, which did not have an outgoing function and only supported patients with cancer, the nurses called for these limitations to be removed in the future. The nurses did not discuss differences in working conditions in rural districts compared to the urban districts. However, our findings revealed differences related especially to economic capacity. The urban districts had care services around the clock, while nurses in the rural districts relied on private arrangements. Moreover, supervision was only available for nurses in the urban districts.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by the Betri Consortium, The Danish Cancer Foundation, Research Council Faroe Islands.