Haematological nurses' experiences about palliative care trajectories of patients with life‐threatening haematological malignancies: A qualitative study

Abstract Aims To explore haematological nurses' experiences about the palliative care trajectories of patients with life‐threatening haematological malignancies. Design A qualitative study with a descriptive and explorative design. Methods Data were collected through 12 individual semi‐structured interviews of nurses who work with patients with haematological malignancies from four hospitals in Norway. The data were analysed using systematic text condensation. The study was reported according to the Consolidated Criteria for Reporting Qualitative Research checklist. Results Three categories emerged from the data analysis: focus on a cure delays integration of palliative care, dialogue with patients facilitates palliative care and the need for enhanced interdisciplinary understanding. Patient or public contribution No patient or public contribution since nurses' experiences were explored.


| INTRODUC TI ON
There have been important advances in the treatment of patients with haematological malignancies over the past few decades.
However, many patients still die from their diseases or treatment complications (Wedding, 2021). Haematological malignancies are a group of blood cancers with heterogenous disease trajectories that can be broadly categorized into four subgroups: Hodgkin's lymphoma, non-Hodgkin's lymphoma, multiple myeloma and leukaemia (Krok-Schoen et al., 2018;Wedding, 2021). Haematological malignancies caused approximately 7% of all global cancer deaths in 2020 (Sung et al., 2021). This number is expected to keep increasing as the world's population continues to age as haematological malignancies have a higher prevalence and mortality rate in those over 65 years of age (Krok-Schoen et al., 2018). The increasing prevalence of haematological malignancies indicates that a large proportion of these patients could have an extensive need for palliative care (Wedding, 2021). In a recent consensus-based definition, palliative care has been defined as the active, holistic care of individuals with serious health-related suffering because of severe illness, and it aims to improve the quality of life of patients, their families and their caregivers. Palliative care is applicable throughout the course of an illness in conjunction with treatment (Radbruch et al., 2020).
Studies have shown that combining palliative care and oncological treatment has several advantages, such as improved survival and symptom control, less anxiety and depression, reduced use of futile chemotherapy at the end of life, a better quality of life for the patient and improved family satisfaction (Dowling et al., 2020;Elliott et al., 2021;Kaasa et al., 2018). However, research shows that patients with haematological malignancies are less likely to be referred to palliative care. For those who are, this tends to occur later in the illness trajectory when compared to patients with other types of cancer (Hui et al., 2014;Vanbutsele et al., 2019;Wedding, 2021).
Patients with haematological malignancies also have a higher risk of dying in the hospital due to complications from aggressive treatments. As a result, palliative care is often provided in the haematology oncology unit instead of a palliative care unit or hospice unit (Elliott et al., 2021;Hui et al., 2014;Manitta et al., 2010).

| BACKG ROU N D
Due to the many advantages of early palliative care in oncological treatment, both patients and healthcare services would undoubtedly benefit from this integration (Kaasa et al., 2018). There are several barriers to integrating palliative care into the overall care plan of patients with haematological malignancies. These include the patient's uncertain prognosis and unpredictable illness trajectory, clinical optimism due to new therapies and clinical trials and lack of awareness of palliative care services (Manitta et al., 2010;Wedding, 2021). However, there is little research available on palliative care for patients with haematological malignancies, and even less on their palliative care trajectories (Moreno-Alonso et al., 2018;Wedding, 2021).
Previous studies have investigated haematology nurses' experiences with and perspectives on end-of-life care (Grech et al., 2018;McCaughan et al., 2019;McGrath & Holewa, 2006, 2007a, 2007b (McGrath & Holewa, 2006, 2007a, 2007b. Studies also suggest that the lack of integration of palliative care in the medical treatment of patients with haematological malignancies, prevents a dignified end-of-life and leads to nurses reporting high levels of emotional distress and powerlessness (Grech et al., 2018;McGrath & Holewa, 2006).
To the best of our knowledge, no studies have investigated nurses' experiences with the palliative care trajectories of patients with haematological malignancies from the early stages of the illness. Consequently, the aim of this study was to explore haematological nurses' experiences about the palliative care trajectories of patients with life-threatening haematological malignancies.

| Design
This study employed a descriptive and exploratory qualitative design, which allows for flexibility when investigating and developing new knowledge on clinical nursing research topics with limited coverage (Hunter et al., 2019). The data were collected through individual, semi-structured interviews. This approach could give nurses time to reflect and express their experiences in their own words, and make it possible to study and understand the nurses' insight on palliative care trajectories about patients with life-threatening haematological malignancies (Polit & Beck, 2021).

| Participants and recruitment
Participants were recruited using purposeful sampling from the haematological wards of four hospitals at national, regional and local levels in the eastern and western regions of Norway. Purposeful sampling was chosen to gain varied and rich data about nurses' experiences (Polit & Beck, 2021). To be included in the study, the participants had to be Registered Nurses with a minimum of 2 years' work experience caring for patients with life-threatening haematological malignancies.
A total of 12 nurses working in inpatient wards agreed to participate in the study: three from a local hospital, four from two regional hospitals and five from a hospital with both regional and national functions. The scope of patients treated at these inpatient wards ranged from those undergoing milder chemotherapy to those receiving stem cell transplantation. One nurse had postgraduate training in palliative care whereas eight nurses had some palliative care training during their postgraduate education (five in cancer care) or master's degree (three in advanced practice nursing). The sample is further described in Table 1.

| Data collection
The interviews took place between November 2021 and January 2022 and lasted between 28-56 min (average of 39 min). They were conducted at the participants' workplaces and were audiotaped.
A semi-structured interview guide was used to facilitate reflection and dialogue with the participants. The guide covered multiple aspects of nurses' experiences with palliative care trajectories with a focus on competency, initiative, decision-making, communication and cooperation. The participants were encouraged to talk about their encounters with both dignified and undignified illness trajectories and how working with this group of patients affected them (Appendix S1). A pilot interview was conducted with an experienced nurse from the first authors' workplace to ensure that the questions in the interview guide were adequately relevant and understandable. After the pilot interview, an additional question was included about how the nurses experienced working with patients with lifethreatening illnesses.
Each interview was conducted by two first authors (SM, AKM or IS) who had professional relationships through work with five of the participants. One author interviewed the participants while the other took notes and ensured that the topics in the interview guide were sufficiently covered. To build trust, the first authors introduced themselves and explained their role in the interview setting. They employed an open and curious attitude to encourage the informants to share their experiences (Brinkmann & Kvale, 2015). Probing questions such as "Could you tell us a little more?" "Can you give an example?" and "How did you experience that?" were asked to prompt the participants to elaborate upon their answers (Polit & Beck, 2021).
During the interviews, the first authors restated or summarized their interpretations of the nurses' answers and then further questioned them to determine the validity of the interpretations. At the end of the interview, the nurses were given an opportunity to speak freely, reflect on the topics and state any last thoughts or additions they might have. Immediately after each interview, the first authors wrote down their primary impressions from the interview to grasp what was perceived as the most important themes.

| Data analysis
The interviews were transcribed verbatim by the first authors and inductively analysed using systematic text condensation (STC) (Malterud, 2012). STC is a descriptive and explorative method consisting of an iterative four-step process to decontextualize and analyse interview data to gain accurate, recontextualized essences of participants' experiences as they were narrated (Malterud, 2012).
The transcripts were first read several times to get an overview of the material and identify the preliminary themes guided by the aim of the study. Each first author identified six to eight preliminary themes. Through discussion, three preliminary themes from these were agreed upon: a curative focus downgrades palliative care, the need for increased patient involvement and early integration of palliative care. The transcripts were re-read to identify meaning units that were then organized into three code groups. The first authors maintained flexibility in code labelling and continuously assessed if meaning units should be reallocated to other groups. The meaning units in each code group were further analysed and organized into two or three subgroups. Each subgroup was abstracted into a summarising text by condensing the associated meaning units. These summaries formed the basis of the development of an analytical text that resulted in three categories of data. The categories were reviewed for consistency and accuracy by comparing them with the original transcripts. The authors agreed on category headings that represented the core results of the study and served to highlight its key findings. An example of the process of analysis is shown in Table 2.
The transcripts and analysis were not returned to the participants for comments or corrections.

| Trustworthiness
The first authors are Registered Nurses with experience in palliative care in haematology. They agree with the observation that the strong focus on curative treatment in haematology leads to palliative care only being considered late in the disease trajectory. By identifying and discussing both individual and shared preconceptions on the matter, the first authors maintained a conscious, critical and reflective approach to data collection and interpretation (Polit & Beck, 2021).
Development of the interview guide, data collection process and data analysis was discussed with co-authors with experience in palliative care and haematology to further improve credibility (Graneheim & Lundman, 2004). The first authors and co-authors had regular discussions on the results of each step of the analysis process and shared their different perspectives on the interpretation and relevance of the data (Malterud, 2012). A shared consensus on the final analysis and categories was reached, and a logbook of important decisions was maintained for reflexivity (Polit & Beck, 2021).
The variation in the level of treatment administered to the patients in the respective hospital wards contributed to diverse experiences about palliative care trajectories and enhanced the credibility of the findings.
The transferability of the study was strengthened by describing the sample, data collection and analysis process. Descriptions of the findings were supplemented with key quotations to allow the reader sufficient insight to evaluate the relevance of the answers and insights to other healthcare contexts (Graneheim & Lundman, 2004;Polit & Beck, 2021). To ensure clarity in the reporting of the study, the Consolidated Criteria for Reporting Qualitative Research checklist was followed (Tong et al., 2007).

| Ethical considerations
The study was approved by the Norwegian Centre for Research Data (NSD) (reference number: 151084) and the data protection officer at each hospital prior to data collection. To ensure that the nurses did not feel pressured to participate in the study, they were recruited by the ward nurse manager of the individual units who then conveyed the participants' contact details to the first authors.
All participants provided signed consent for their involvement in the study after receiving written information about the project.
This included an assurance that all their information would remain confidential, their participation was voluntary and they could withdraw their consent at any time without consequences (Beauchamp & Childress, 2019). Prior to beginning the interview, the first authors repeated the information about voluntary participation in the study. The data collected was stored securely in accordance with the guidelines by NSD.

| FINDING S
Three categories emerged from the data analysis: focus on a cure delays integration of palliative care, dialogue with patients facilitates palliative care and the need for enhanced interdisciplinary understanding. Categories and subgroups are described in Table 3.

| Focus on a cure delays integration of palliative care
Several of the nurses had worked with both oncological and haematological patients and reflected on the differences in the way palliative care trajectories were integrated for the two groups.
In their experience, oncologists were more familiar with palliative care principles, and palliative care was introduced earlier in oncological patients' illness trajectories. Haematologists, on the TA B L E 2 Example of stepwise analysis from the unit of meaning to category using STC.

Meaning units Subgroup Category
We give input based on our observations, we also have a dialogue with the patients beyond the very limited timeframe the doctors are present for a visit, sometimes the patients express their fatigue, that they have had enough, and we have to communicate that to the doctors. (nurse 7) We spend a lot of time with the patient, discuss a lot with the patient and his or her relatives, and we can often get an impression of where they stand and what they want. (nurse 10) We see the patients many more hours than the doctors do.
The patients may look ok during the visit of the doctor, but they are not. I believe the doctors are sometimes a bit surprised that we bring up palliative care, but it starts a process and after a while they agree with us. (nurse 9) waited too long before discussing the patient's prognosis, and that they should give the patient and their family realistic information about the situation at a much earlier stage. These nurses were concerned that the patients were not sufficiently informed about the possible risks and complications of treatment, and therefore did not have enough knowledge to comprehend how sick they could become. As one nurse described: After a while we understand that they haven't un-

| The need for enhanced interdisciplinary understanding
The nurses perceived that they were a step ahead of the doctors in identifying patients who might be eligible for palliative care. They said that they have a unique insight into the patients' physical and mental state and individual preferences because they care for them at all hours and in various situations. Many nurses pointed out that while having a specialization or degree was an advantage, experience was just as important to be able to identify those patients in need of palliative care. The nurses often attempted to share their observations with the doctors and described advocating the patient's case as an important part of their work. As one nurse described: We try to put forward our points of view, and kind of, speak on behalf of the patient and his or her family. We try to suggest that it might be, purposeful is maybe not the right word, but important for the pa-  Our participants experienced the doctors' decisions on whether to continue treatment as ethically difficult and that some treatments continued for too long or were futile. The impression that patients were treated more aggressively than the participants believed should be the case could be a source of moral distress for the participants. Sanderson et al. (2019) define moral distress as "ethical unease or disquiet resulting from a situation where a clinician believes they have contributed to avoidable patient or community harm through their involvement in an action, inaction or decision that conflicts with their own values." A quantitative literature review found that nurses experienced moral distress more frequently when they acted in a way that they felt was not in the patients' best interest such as providing futile care (Oh & Gastmans, 2015). According to Benner et al. (2011), the decision to continue or terminate treatment needs to be based on both ethical and clinical reasoning, as it is unethical to either give futile care or not offer patients the best available treat-

ment. Reports from the Lancet Oncology Commission and Lancet
Commission on Value of Death indicate that patients and doctors tend to focus on treatment in uncertain situations due to their hope for prolonged survival (Kaasa et al., 2018;Sallnow et al., 2022).
Furthermore, offering curative therapies seems to have become synonymous with caring for patients (Benner et al., 2011). Our participants felt that the treatment sometimes continued for too long and questioned its aggressive nature especially when administered to frail patients. The option of not treating certain patients should be actively considered (Benner et al., 2011) as new treatments often extend life only marginally, and end-of-life chemotherapy produces more harm than good in patients over 80 years of age (Krok-Schoen et al., 2018;Sallnow et al., 2022).
Our participants had different experiences with how well patients were informed, and some believed that a lack of timely and honest information hindered open dialogue with patients. Honest discussions, even when the prognosis is poor, could enhance the relationship between patients and the medical team. However, avoiding prognostic discussions could lead to mistrust, anxiety, reduced quality of life and family distress (Kaasa et al., 2018). to predict, and it can be challenging for patients to decide whether undergoing aggressive treatment is worth the suffering involved (Wedding, 2021). A lack of understanding of their prognosis could make patients overestimate the chance of a cure and is associated with an increased willingness to accept chemotherapy (El-Jawahri et al., 2020). Even if patients have received adequate information about their disease and prognosis, they may not be able to understand the intention of the treatment (Sallnow et al., 2022) or remember the information later (Wedding, 2021). Kaasa et al. (2018) underlined the importance of assessing what patients already know and the level of detail that they want and using non-technical language when explaining the prognosis, encouraging questions, verifying their understanding and tailoring communication to meet the patient's needs.
Our study suggests that the nurses regard themselves as competent in discussing palliative care with patients, however, in line with the study by McCaughan et al. (2019), they hesitated to discuss death and found it challenging to find the right time for these conversations. According to our participants, this could prevent patients from expressing their end-of-life wishes. Each patient has individual beliefs, values and needs that should be reflected in their care (Österlind & Henoch, 2021). Through open, two-way dialogue, nurses can enhance patients' ability to express how they view and experience their situation and preferences and enable them to be co-creators of their palliative care trajectory. This person-centred care approach allows the nurses to help patients live as good a life as possible during their palliative care trajectory (Österlind & Henoch, 2021). Such discussions are essential and should be seen as a professional responsibility throughout the illness trajectory (Sallnow et al., 2022). Nurses sometimes experience human and nursing failure in care when patients do not have time to prepare for death. Therefore, it is important that nurses work towards bridging this gap by discussing human aspects of illness and hospitalization, such as the patient's concerns, fears and hopes (Benner et al., 2011).
To meet the complex needs of patients with life-threatening diseases, palliative care is often provided by multidisciplinary teams with professionals from different disciplines (Leclerc et al., 2014;World Health Organization, 2016). In contrast, patients with haematological malignancies primarily receive palliative care from their haematology team (Wedding, 2021). Our participants believed that an enhanced interdisciplinary approach, where doctors and nurses discuss patients and share their assessments, can lead to a common understanding and more holistic palliative care trajectories.
Interdisciplinary cooperation entails that professional groups share knowledge and plan patient care together (Klarare et al., 2013;Leclerc et al., 2014

| Limitations
The ward managers of the different wards had sole hands in recruiting the participants and may have done so in a manner to represent their own or the ward's views about palliative care trajectories.
Additionally, they could have chosen participants who they knew would represent the ward in a favourable manner.
A sample of 12 nurses might be considered small. However, the participants had diverse experiences and provided rich data related to our study's aim. We perceived that during the interviews, the nurses shared their reflections and experiences openly and honestly.
The sample size was therefore considered to have sufficient information power (Malterud et al., 2016 , 2002). However, these interviews were conducted by the first authors who were least acquainted with the respective participants to encourage the participants to express their thoughts more freely. When reviewing the interviews of the nurses in question, they were found to share experiences that were both critical and supportive of current practices.
The interviews were conducted by two first authors, which may have affected the participants' ability to relax and feel comfortable providing candid, genuine answers since they were in the minority during the interview (Polit & Beck, 2021).

| CON CLUS ION
The nurses experienced that the integration of palliative care was hindered by a medical focus aiming to cure or prolong life, which could lead to patients being overtreated. The nurses described a lack of openness about the oppourtunity of palliative care and death.
They believed that enhanced dialogue with patients would allow them to better understand their prognosis, include them in treatment decisions, and give them time to prepare for death. The nurses also believed that enhanced interdisciplinary cooperation could improve long-term planning and, subsequently, patients' palliative care trajectories. However, they experienced a lack of arenas where they could share their assessments and discuss their patients with the doctors. Nurses' insights on patients' needs and concerns could contribute to more holistic palliative care trajectories and ensure a person-centred approach to care. Future research should therefore focus on ways to improve collaboration between nurses and doctors working in haematology wards. Based on our findings, we would also recommend further research into the development of palliative care guidelines, which incorporates knowledge from both haematologists and haematological nurses. Involving patients and relatives in the development of these guidelines can further improve patients' illness trajectories.

AUTH O R CO NTR I B UTI O N S
Design: SM, AKM and IS; data collection and drafting of the manuscript: SM, AKM and IS; data analysis: SM, AKM, IS, MEK and SAS and critical reviewing of the manuscript: MEK and SAS. All authors approved the final version of the manuscript.

ACK N OWLED G EM ENT
The authors would like to thank all the participants for their contribution and time to help with this research.

FU N D I N G I N FO R M ATI O N
SM, AKM and IS wrote this article as part of their master's degree which was funded by the Department of Haematology, Oslo University Hospital, Oslo, Norway.

CO N FLI C T O F I NTE R E S T
The authors declare no conflict of interest.

DATA AVA I L A B I L I T Y S TAT E M E N T
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.