Nurses’ experiences of compassionate care in the palliative pathway

Abstract Aims and objectives The aim was to explore how nurses experience compassionate care for patients with cancer and family caregivers in different phases of the palliative pathway. Background Compassion is fundamental to palliative care and viewed as a cornerstone of high‐quality care provision. Healthcare authorities emphasize that patients should have the opportunity to stay at home for as long as possible. There are, however, care deficiencies in the palliative pathway. Design This study employed a qualitative design using focus groups and a hermeneutic approach. Methods Four focus groups with three to seven female nurses in each group were conducted in Mid‐Norway in 2018. Nurses’ ages ranged from 28–60 years (mean age = 45 years), and they were recruited through purposive sampling (N = 21). Compassionate care was chosen as the theoretical framework. Reporting followed the COREQ guidelines. Results Three themes expressing compassionate care related to different phases of the pathway were identified: (a) information and dialogue, (b) creating a space for dying and (c) family caregivers’ acceptance of death. Conclusions This study showed that it was crucial to create a space for dying, characterized by trust, collaboration, good relationships, empathy, attention, silence, caution, slowness, symptom relief and the absence of noise and conflict. Relevance to clinical practice The quality of compassion possessed by individual practitioners, as well as the overall design of the healthcare system, must be considered when creating compassionate care for patients and their family caregivers. Nursing educators and health authorities should pay attention to the development of compassion in education and practice. Further research should highlight patients’ and family caregivers’ experiences of compassionate care and determine how healthcare systems can support compassionate care.


| INTRODUC TI ON
Compassion is fundamental to palliative care and can create an environment of safety for patients and family caregivers. Compassionate care is built on trust and good relationships between the patient, the family and healthcare personnel (Brito-Pons & Librada-Flores, 2018;Larkin, 2016).
There are various definitions of compassionate care (Crawford et al., 2014;Feo et al., 2018;Strauss et al., 2016). In this study, we followed a broad description of compassion as involving an awareness of, or a sensitivity to, the pain or suffering of others that results in taking verbal, nonverbal or physical action to remove, reduce or alleviate the impact of such affliction (Gilbert, 2013). This description is relevant because research has shown that patients and their family caregivers experience deficiencies in palliative care provision (McEwen et al., 2018;Røen et al., 2018;Tarberg et al., 2019). A Norwegian study found that family caregivers experienced limited involvement, a lack of preparation for the dying phase, and unsystematic follow-up after death (Tarberg et al., 2019). An Australian study showed a gap between guidelines and family caregivers' experiences of emotional and psychological support in palliative care (Aoun et al., 2017).
The integration of palliative care with oncology is recommended; however, this has been insufficiently addressed in healthcare systems . Six main elements of patient-centred care are highlighted: (1) respect for patients' values, preferences, and expressed needs; (2) coordination and integration of care; (3) information, communication, and education; (4) physical comfort-relief of bothersome symptoms; (5) emotional support-relief of fear and anxiety; and (6) involvement of family and friends .
Nurses can play a key role in integrating palliative care and oncology by providing compassionate care (Brito-Pons & Librada-Flores, 2018).
In this study, we explore nurses' experiences of compassionate care for patients and family caregivers in the palliative pathway.
Nurses work closely with patients and family caregivers and are therefore a relevant population in which to explore compassion.

| BACKG ROU N D
One recent study, which included participants from 15 countries, Compassion requires action (Larkin, 2016). True compassion is expressed through the highest level of clinical practice, which addresses the totality of symptom burden and complex needs.
Compassion implies a sense of coherence, nurses being able to communicate a compassionate essence, based on knowledge, proactivity and interconnectedness in the delivery of nursing. Compassion is not just about individual responses, but rather about how nurses are enabled by the system to sustain and support themselves in the complexity of palliative care (Larkin, 2016).
To support the patient in the process of dying, previous researchers have identified some key elements deemed important by community nurses: symptom control, patient choice, honesty, spirituality, interprofessional relationships, organization and the provision of seamless care (Griggs, 2010). Building trust and knowledge with patients and their families is valuable during end-of-life care. Building trust depends on nurses' availability (Stajduhar et al., 2011). Compassionate care facilitation includes the personal and relational characteristics of the primary care nurse, the organizational framework and an individually tailored care system. Barriers to compassion include personal challenges, relational challenges, system challenges and maladaptive responses (Singh et al., 2018).
Nurses have a coordinating role between patients, families and other health professionals, which is also challenging (Sekse et al., 2018). Wilson et al. (2014) reported that primary care nurses have noted that family dynamics impact on complex and difficult situations. The family, patient and nurses may all be at different stages in the acceptance of death. Further, conflict may arise when patients conceal information about their medication or misunderstand and feel suspicious around its use (Lund et al., 2015;Wilson et al., 2014 • It provides insight into nurses' role in compassionate care in different phases of the palliative pathway.
• It highlights the importance of early engagement with family caregiver as a key element of compassionate care.
• Nurses play a crucial role in creating a space for dying which is important for patients' and their family members' preparation for death.
research that captured the experiences of palliative care in hospitals from the perspectives of bereaved families (Dewar & Nolan, 2013;Durie, 1985;Gott et al., 2019). The researchers extended the framework to encompass Māori values of compassion during end-of-life care.
This model differs from others by noting how compassion should be integrated into nursing practice by referring explicitly to compassion as a verb. The model considers patients' cultural background in care provision and the family members involved, which may be used to support the implementation of the relational component of 'Fundamentals of Care' . Knowing enough about patients and developing trust is an important element in this framework. Conceptualizing compassion as an action may be used as a platform on which to develop meaningful relationships .
This framework outlines four values, which optimize compassionate nursing in the palliative pathway: (1) relationships that express care, (2) the process of establishing good relationships, (3) the use of contextualized knowledge and (4) a reciprocal process of mutual respect between people. This model refers to a Māori concept that relates to the process of establishing relationships and nurturing ongoing connections through effective inter-relational caring.
This understanding of compassion brings the nurse and the patient closer together and provides a better understanding of the patient as a person .
In our study, we explored compassionate care in the Norwegian is necessary to enable nurses to fulfil these aims .
In this study, we understand compassionate care as consisting of three dimensions: noticing, feeling and responding. In addition, we consider compassionate care as an overall design of healthcare organizations (Blomberg et al., 2016;Crawford et al., 2014;Gilbert, 2013;Kanov et al., 2004;Larkin, 2016). We have divided the palliative pathway in three different parts: the first phase is defined as the first days following the diagnosis of an incurable disease, the second phase is the middle part of the incurable disease, and the third phase, also termed as the terminal phase, constitutes the last weeks and days before death (Tarberg et al., 2019). The aim was to explore how nurses experience compassionate care for patients with cancer and family caregivers in different phases of the palliative pathway.

| Design
The study employed a qualitative design with a hermeneutic approach (Gadamer, 1989;Patton, 2015). Focus groups were chosen to explore nurses' experiences through discussions with other participants with whom they had something in common -in order to promote self-disclosure (Brinkmann & Kvale, 2015;Krueger & Casey, 2015;Malpas & Gannder, 2017). The Consolidated Criteria for Reporting Qualitative Checklist were followed, see File S1 (Tong et al., 2007).

| Sampling
Informants were chosen by means of purposive sampling (N = 21) (Brinkmann & Kvale, 2015;Krueger & Casey, 2015). Four focus groups with three to seven female nurses in each group participated in the study. Nurses' ages ranged from 28-60 years (mean age = 45 years). Nurses from primary care facilities and from nursing homes were recruited because they had experiences in different phases of palliative care. Nurses from urban and rural areas were also included to increase data variation. Participants worked in different municipalities in Mid-Norway with 2000 to 43,000 inhabitants. Inclusion criteria were nurses who had worked in palliative care for more than three years and who could speak fluent Norwegian.
Administrative nurses were excluded. Participants' demographic characteristics are shown in Table 1.

| Data collection
Nurses were recruited face-to-face by contact persons in the mu- Experience in a community institution 9 Experience in home care and community institution 5 Female 21 Male 0

51-60 years 9
Nurses from urban areas 10 Nurses from rural areas 11 different phases of the palliative pathway: namely the first, the second and the third phase. The question route was as follows: Data were collected in 2018, until no substantially new information was obtained from the last group. We considered that the data were saturated regarding all the preliminary themes. Saturation was discussed between the researchers after the interviews. Data collection and analysis went hand-in-hand (Patton, 2015). The moderator let the discussion flow naturally between participants, that is they were given the opportunity to speak openly and to participate in the focused discussion. (Krueger & Casey, 2015).

| Data analyses
We used compassionate care as a theoretical framework when interviewing the nurses. All the authors read the interviews to gain a holistic impression of the data (Brinkmann & Kvale, 2015). The first author coded the interviews related to compassionate care in the first, second and third palliative phase. The first author has worked as an oncology nurse in primary care for 10 years. Leaning on a hermeneutic approach, we were aware that her preunderstanding influenced data interpretation (Gadamer, 1989); therefore, all authors engaged in discussing the analyses and a new understanding was developed from group discussions (Brinkmann & Kvale, 2015). We used the hermeneutic circle, in which the meaning of the parts is determined by the global meaning. Consequently, we gained a new and deeper understanding of compassionate care in different phases of the pathway -both for patients and for their family caregivers (Gadamer, 1989). In the process of interpretation, it was important to read the interviews with empathy, that is we tried to understand the intentions behind what was said. This enriched our previous interpretations. In all our interpretations, our perceptions of the nurses' view of compassionate care were central (Alvesson & Sköldberg, 2018). Quotations, subthemes and themes are presented in Table 2.

| Ethical considerations
The project was undertaken according to research ethics guidelines (World Medical Association, 2013 All nurses were given oral and written information that they could withdraw whenever they wanted. Informed written consent was obtained by all nurses at the start of the interviews. All data were anonymized. The informants were colleagues, and we were conscious of presenting the interviews in a respectful manner (Brinkmann & Kvale, 2015).

| Rigour
Decisions were carefully described to enhance the transparency of this study (Polit & Beck, 2012) and to enable readers to evaluate the research process. Two researchers conducted the interviews, and both were experienced in performing qualitative interviews. The theoretical framework was carefully described to increase data interpretation validity (Patton, 2015). A coding tree and various stages in the analysis were described to enhance reliability in the analysis. All authors participated in discussions about data interpretation (Tong et al., 2007). Participants' quotations were presented to illustrate the themes (Table 2).

| RE SULTS
Twenty-one nurses working in palliative care shared their experi-

| Creating a space for dying
The second phase needed to be a quiet period in which patients and family caregivers were provided with security, predictability

Quotes Subthemes Theme
Theme (a) 'When we manage to establish early contact, it becomes easier to work together at the end.'

Early involvement of primary care nurses
'We need to help them create a palliative plan and clarify important aspects, try to avoid situations where decisions must be made quickly, and where patients and family caregivers may not be prepared.' Advance care planning Information and dialogue 'It was a good process because we cooperated: palliative team, general practitioner, the nursing home and family caregivers.' The family caregivers as a part of the team 'We have the opportunity to create a space, where patients and families can prepare for death.' Trust 'Family caregivers sometime express: 'You must get the patient to the nursing home, but please don`t tell him/her that the words come from us.''

To balance conflict of interest
Creating a space for dying 'There was a mother with small children who said she hoped to recover. The nurse then replied: 'Yes, I hope so too, but we must have an alternate plan.''

Emotional reciprocity
Theme ( Communication skills were also an essential competence with regard to providing compassionate care. Nurses described how they tried to prepare patients and families for the last days and death.
They indicated that certain patients could not relate to their impending death: 'There was a mother with small children who said she hoped to recover. The nurse then replied, "yes, I hope so too; but we must have an alternate plan."' This way of responding to the patient illustrates that the nurse is listening to the patient in a way that conveys both hope and realism. Communicating in an empathic way is an important part of compassionate care.
Another recurrent topic was the importance of nurses having expertise in symptom relief. Nurses experienced that there was a lack of collaboration between physicians and nurses. This could result in patients not receiving adequate medication in time. The nurses argued for the importance of interprofessional collaboration with regard to the provision of symptom-relieving medication in the third phase. This allowed for combined planning and the anticipation of possible difficulties, at a system level. It also required that professionals find new ways of collaborating with each other.

| Family caregivers' acceptance of death
The nurses experienced the last phase as difficult. Dilemmas arose when healthcare professionals and family caregivers had a different understanding of treatment choices; for instance, if family caregivers wanted health personnel to provide treatment and the patient did not want it. The need for information to family caregivers about palliative treatment was highlighted, especially relating to fluid and nutrition: 'Family caregivers require explanations about the death process, and how to meet the needs of a dying patient'. Nurses had experienced that family caregivers could become despairing and angry when the patient could not eat and drink in the third phase. They had often experienced that treatment limits had not been made clear in advance. Hence, a common understanding between healthcare personnel and family caregivers was important.
After a patient's death, nurses had bereavement routines to follow, in which contact was offered to grieving family members: 'We offer bereavement counseling, four to six weeks after the death'. Nurses in the focus groups vehemently discussed communication with the bereaved. The routines seemed, however, to differ both between municipalities and within municipalities. In some municipalities, nurses offered calls only to the bereaved family of patients who had died of cancer.
Nurses experienced that the bereaved had different needs, and some nurses expressed that it was especially important for the be-

| DISCUSS ION
The focus groups provided rich data and gave a new understanding of the meaning of compassionate care in different phases in the palliative pathway. The analyses have revealed that compassionate care is contextual. Information and dialogue with patients and family caregivers was crucial in the first phase. In the second phase, the nurses highlighted the importance of creating a space for dying. In the third phase, family caregivers' acceptance of patients' death was important.
Information and dialogue with patients and family caregivers early in the pathway was an important finding in this study. Earlier research has indicated that building trust, knowledge and good relationships are important in end-of-life care Stajduhar et al., 2011). This is in accordance with the results presented in this study. The nurses advised that family caregivers should be seen as part of the team around the patient.
Our study show the significance of advance care planning, which involves patients and family caregivers in the process. The goal of advance care planning is to ensure that medical care is consistent with patients' and family caregivers' values, goals and preferences . Nurses experienced that advance care planning gave patients and family caregivers a sense of security and prepared them for future challenges. In this, they mirror the findings of Pfaff and Markaki (2017), who, in an integrative review, highlighted the significance of collaborative and patient-and family-centred care.
Nurses expressed that creating a space for dying was crucial for patients and family caregivers. The significance of creating this space has not been highlighted in previous research about compassionate care in the palliative pathway. Based on the findings in this study, it is urged that the provision of primary health care for the dying, whether at home or a nursing home, is provided with facilities, and a philosophy, which facilitates a compassionate culture for both patient and family caregiver. Larkin (2016) has argued that compassion is not just about individual responses, but rather about how practitioners are able to sustain and support themselves in the complex field of palliative care.
The importance of creating a space for dying demands that nursing managers and policymakers prioritize resources for healthcare personnel to assist them in shaping a compassionate culture (Crawford et al., 2014;Martinsen & Kjerland, 2006). Our findings support the understanding that the organization and design of services are important in compassionate care.
Family conflicts, different stages of accepting death within the family and denying families a role in decision-making are obstacles to creating compassionate care (Lund et al., 2015;Wilson et al., 2014).
In this study, nurses experienced that they played a significant role by being active in creating a space for dying. We consider this space as important for patients and families in accepting and preparing for death.
Further, a lack of interdisciplinary collaboration, specifically, physicians' failure to prescribe sufficient pain relief medication were problematic. This may be an obstacle to patients receiving symptom relief in the third and terminal phase. Griggs (2010) describes symptom control as a key element in supporting patients' process of dying. International recommendations  have also highlighted the importance of physical comfort-relief of bothersome symptoms. Nurses experienced that they play a crucial role in collaboration with physicians to ensure that a patient receives effective pain relief. The supply of care and medication needs to be well-organized, so that dying patients get symptom relief also in weekends and holidays.

| Strengths and Limitations
This study illustrated compassionate care in the palliative pathway from the perspective of nurses and not from the experiences of patients and family caregivers. The study provided rich data, which we believe offers new insight into compassionate care in various phases of the palliative pathway. In the future, it is suggested that compassionate care in the palliative pathway be studied from the perspectives of patients, family caregivers and physicians, to enable us to develop a more holistic understanding.
Compassionate care was chosen as the theoretical framework (Blomberg et al., 2016;Brito-Pons & Librada-Flores, 2018;Crawford et al., 2014;Robinson et al., 2019). This framework had an impact on how the data were collected and interpreted. A hermeneutic approach assumes that the findings are an interpretation based on a theoretical framework and should be interpreted in a cultural and historical context (Patton, 2015). This background is import- in the community of practice in Norway.
Although this study was conducted in Norway, the findings may be generalized to other countries with similar health services (Polit & Beck, 2012). The theoretical framework (Blomberg et al., 2016;Crawford et al., 2014;Gilbert, 2013;Kanov et al., 2004;Larkin, 2016) was important in revealing key elements of compassionate care at various stages of the pathway. In the interviews, we used Norwegian terms that corresponded with terms and concepts in the English theoretical framework of compassionate care. The study provides new insights of international relevance because the findings reveal existential and general challenges related to caring in the palliative pathway.
The first author has been working as an oncology nurse in primary health care for many years, and she has experience in the concepts discussed in this study. However, all the authors collaborated in the data interpretation to develop a new understanding and to ensure a holistic perspective (Gadamer, 1989;Patton, 2015).

| CON CLUS ION
Compassionate care is different in the three phases of the pathway, and the nurses should take an active role in creating compassionate care throughout the pathway. It is crucial to create a space for dying. Trust, collaboration, good relationships, empathy, attention, silence, caution, slowness, symptom relief and absence of noise and conflicts characterize compassionate care when crating a space for dying. It is likely that the findings can provide insight into caring in the palliative pathway for patient groups with other chronic diseases.