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Palliative care facilitates the preparedness of caregivers for thoracic cancer patients

Abstract Objective Palliative care improves outcomes for patients with thoracic cancer; however, limited evidence exists for the benefits of this approach for caregivers. This study aimed to advance understanding of the experiences of palliative care described by bereaved caregivers. Methods Fifteen adult caregivers completed semi‐structured interviews following prior participation in a randomised controlled trial of early referral to palliative care versus discretionary referral to palliative care. Interviews explored caregiver experiences of palliative care delivery. Interview transcripts were thematically analysed. Results Four related themes about the experiences of palliative care were identified, each of which required sufficient time between palliative care first contact and death: ‘relationship building’; ‘clear communication and information’; ‘access to practical support’; and ‘access to psychosocial support’. The core category underpinning these themes was palliative care facilitates caregiver preparedness. Caregivers noted that palliative care played a critical role in preparing them for the future and described a sense of practical and emotional ‘relief’ associated with the support services made available to them. Conclusion Our findings emphasise that palliative care can have a positive impact on caregivers' preparedness for providing the care needed by thoracic cancer patients and that this can improve the experiences of both caregivers and patients.


| INTRODUCTION
Thoracic cancers, encompassing lung cancer and malignant pleural mesothelioma, are the leading causes of cancer death, accounting for 2.2 million new diagnoses and 1.8 million deaths worldwide (Sung et al., 2021). Despite improvements in diagnostics and treatments, prognosis for thoracic cancers remains poor and the symptom burden high (Lutz et al., 2001). This burden, which includes symptoms such as pain, fatigue, and shortness of breath, can have a considerable impact on patients' quality of life (QoL). Alongside the experiences of patients, caregivers are also adversely affected by the illness. Caregivers of patients with thoracic cancer are often faced with complex situations and may feel inadequately prepared for the responsibilities being asked of them, which can negatively influence their own wellbeing and their ability to give care (Braun et al., 2007;Hannon et al., 2013;Northouse et al., 2012). Having well-prepared caregivers and promoting their wellbeing are core elements of a palliative care approach (Levy et al., 2012).
Caregivers are a highly important group who enable patients to remain at home and provide support that is crucial to both their physical and psychological wellbeing. Although many caregivers find personal satisfaction and accomplishment from this role, it can also be challenging or even overwhelming (Braun et al., 2007;Northouse et al., 2012). Caregiving can involve multiple tasks, including but not limited to complex medical management, such as identifying and reporting side effects, administering medications, care coordination, and household tasks. This can lead to increasing stress over time, with a significant physical, psychological, and social impact for the caregiver.
A recent cross-sectional study of 43 dyads of people with lung cancer and their caregivers reported that the prevalence of anxiety and depression was 47% and 28% respectively, and in some cases, the distress of caregivers exceeded that of patients . Notably, a meta-analysis of 21 studies involving people with cancer and their caregivers found positive associations between patient and caregiver psychological outcomes (Hodges et al., 2005), suggesting that patients' wellbeing directly affects caregivers' distress and vice versa. This mutuality of risk suggests that the focus of care should include the caregiver.
Palliative care is defined as multidisciplinary care that aims to enhance QoL and improve quality of care for patients and their families, including caregivers (Ringdal et al., 2002;World Health Organization, 2020). As previous studies have indicated, thoracic cancer patients and their caregivers represent a cohort that can greatly benefit from an intervention with a palliative care strategy. Research undertaken to determine the effects of palliative care early in the course of thoracic cancer have demonstrated significant improvements in patient outcomes, including QoL, timely end of life planning, symptom control and, in some cases, survival (Bakitas et al., 2009;Temel et al., 2010;Yoong et al., 2013;Zimmermann et al., 2014). In contrast, evidence for the benefits of this approach for caregivers of patients with thoracic cancer has received limited attention to date.
In-depth understanding of the experiences of palliative care for caregivers of thoracic cancer patients has the potential to cultivate awareness of the role of this approach to care, and its possible lessening of the burden upon caregivers. The present study is part of a multi-centre phase three randomised controlled trial of early referral to palliative care versus discretionary referral (usual care) to palliative care for patients with recently (within 60 days) diagnosed, advanced thoracic cancer. Bereaved caregivers of patients from both study arms were interviewed 2-3 months following the patient's death. The aim of this qualitative study was to advance understanding of the experiences of palliative care described by bereaved caregivers of people who died from thoracic cancers.

| Design and participants
This study is a substudy of a randomised controlled clinical trial examining the effects of early referral to palliative care on outcomes for patients with advanced thoracic cancers, registered with the Australian New Zealand Clinical Trials Registry (ACTRN12617000166370). The methods and results of this trial are reported elsewhere (Mileshkin et al., 2018).
Eligible patients were adults aged ≥18 years with a diagnosis within the last 60 days of either (i) advanced non-smell lung cancer (NSCLC), including de novo stage IV disease, recurrent NSCLC, and locally advanced disease not planned for curative treatment, or (ii) extensive stage small cell lung cancer (SCLC), or (iii) advanced malignant pleural mesothelioma (MPM) not planned for extrapleural pneumonectomy or pleurectomy decortication, a Karnofsky performance status of 50 to 100 at the time of randomisation, and had sufficient English literacy to provide written and informed consent.
Patients who required immediate referral to palliative care had already been referred to palliative care or had a life expectancy of less than 3 months were excluded. Recruited patients were asked to nominate their primary caregiver, who was approached with the patient's consent for trial-specific caregiver participation in the research. This study was approved by the institutional Human Research and Ethics Committee (HREC/16/RPAH/467). Consolidated criteria for reporting qualitative research were used to guide the reporting of this research (Tong et al., 2007).

| Intervention and control
The palliative care intervention in this trial consisted of standard oncological care plus early referral (within 60 days of diagnosis) to a palliative care service. The intervention included (i) an initial palliative care consultation with a hospital-based palliative care service, (ii) a case conference between the hospital-based palliative care service and the patient's general practitioner within 28 days of the initial palliative care consultation, and (iii) a regular follow-up with the hospitalbased palliative care service after the initial consultation according to the patient's needs every 3-4 weeks. The content of the consultations was based on the National Comprehensive Cancer Network guidelines for palliative care (Levy et al., 2012). Consultations consisted of an assessment of patients' physical, psychological, social, and spiritual needs. The control arm received standard oncological care and referral to a hospital-based palliative care service at the treating clinician's discretion.

| Qualitative caregiver study
At 2-3 months following the patient's death, a subset of caregivers in each trial arm was identified to participate in a qualitative semistructured telephone interview. Consecutive sampling of caregivers was utilised and supplemented by purposive sampling to ensure representation across age, gender, diagnoses, and regionality. Caregivers were initially contacted by a trials nurse or site coordinator and invited to participate in an interview. Author SP then contacted interested caregivers by telephone to schedule an interview.  (Table 1). Prompts were used to elicit further detail, follow-up experiences, and viewpoints emerging dependent on participants' responses. Telephone interviews were an average 44 min duration (range 28 to 71 min).

| Data analysis
Interviews were audio-recorded, transcribed verbatim, transcriptions checked for accuracy by authors NZ and SP, and deidentified. Analysis involved immersion in the data with repeated listening of recordings and reading of interview transcriptions using Braun and Clarke's sixstage reflexive thematic analysis method (Braun et al., 2018;Braun & Clarke, 2006). During the analysis, the authors employed an inductive approach to thematic analysis and worked within a realist epistemology. That is, the authors were not committed to any pre-existing coding frameworks or preconceptions and instead sought to report experiences, meanings, and the reality of caregivers, which aligns clearly with the exploratory nature of the present study. Familiarisation and initial coding of a subset of the transcripts were conducted independently by authors NZ, JP and SP. Coding of remaining transcripts was performed by NZ, and codes were refined into themes.
The themes were formally defined and subsequently summarised with extracts from the transcripts. Codes and themes were reviewed and verified by co-authors.

| Participant characteristics
A total of 15 caregivers (9 intervention and 6 control), with a median age of 63 years (range 40-85), completed interviews between April 2018 and July 2021. Most caregivers were women and acted as the T A B L E 1 Interview guide

Topic Questions
Perceived patient issues or concerns Can you tell me about the few weeks leading up to <patient's> death?
What were the biggest issues or concerns for <patient> in the last few weeks?
Caregiver issues or concerns What were the biggest issues/concerns for you in the last few weeks?
What things were helpful for you at this time?
What things did you think were not helpful?
Timeliness and usefulness of palliative care What are your reflections on the care/palliative care that <patient> received?

Suggestions for improvement
Are there other things that you want to tell us about this time for <patient> and for you?
Things we should know, suggestions for doing things better? caregiver for their spouse (73% respectively) ( Table 2). Caregivers were interviewed an average of 2 months after the patient's death (range = 2-4 months).

| Overview of themes
Analysis of the qualitative data resulted in the overarching theme that palliative care facilitates caregiver preparedness. This sense of preparedness was seen as a core task of palliative care and was achieved

| DISCUSSION
This study provides an in-depth qualitative account of caregiver experiences, highlighting that a core task of palliative care for caregivers of people with thoracic cancer is to facilitate a sense of preparedness.
While clinical practice guidelines clearly state that the needs of caregivers should be responded to with relevant psychosocial and practical supports and information provision (Howell et al., 2012;Hudson et al., 2012;National Comprehensive Cancer Network, 2022), there is evidence that their implementation into routine clinical care is limited and that the support needs of caregivers are often unmet (Dilworth et al., 2014;Wang et al., 2018). This may be because psychosocial aspects of care are not seen as central to the scope of practice for busy clinicians and lack of confidence about addressing psychosocial concerns (Dilworth et al., 2014). However, our results suggest that preparing caregivers through providing information and access to practical and psychosocial supports is meaningfully realised in clinical practice by palliative care.
In addition, palliative care served an important role in helping caregivers to cope with their loved one's deteriorating health status and death. These perceptions indicate that palliative care recognised the critical role of caregivers in helping patients cope with the effects of thoracic cancer and their need for preparation. This need for preparation is particularly salient for caregivers of advanced thoracic cancer patients, who have complex clinical and care needs that differ from those with earlier stage cancer or curable disease (Hart et al., 2022). This requires intensive and prolonged home-based caregiving, which can become physically and emotionally overwhelming and negatively impact caregiver QoL . Thus, having well-prepared caregivers and promoting their wellbeing is critical. Our findings suggest that palliative care plays a critical role in facilitating preparedness and builds on previous literature that attests to the benefits of quality palliative care for patients (Bakitas et al., 2009;Ringdal et al., 2002;Temel et al., 2010;Yoong et al., 2013;Zimmermann et al., 2014).

This study revealed that building a relationship with caregivers
was key for achieving caregiver preparedness. Understanding the needs and preferences of caregivers early in the disease trajectory Our findings demonstrate that relationship building is equally important for caregivers and suggest that important outcomes, such as caregiver experiences, engagement in decision-making, and transitions of care, may be influenced by relationships with caregivers in the early phases of illness. This suggests that palliative care is applicable already early after the diagnosis of advanced cancer and contradicts studies and common perceptions that this approach may be physically and/or psychologically harmful (Collins et al., 2017;Haun et al., 2017;Shen & Wellman, 2019;Touzet et al., 2019). This knowledge should reassure members of the healthcare team who have concerns about the timing for introducing palliative care services (Schofield et al., 2006).
Our findings also suggest that provision of clear prognostic information facilitates caregivers' preparedness for death, which strongly impacts caregiver experiences both pre-and post-death. Avoidance of false optimism and setting realistic expectations allowed caregivers to be prepared for the future, to make plans for spending meaningful time with their loved one leading up to the death and, in turn, facilitated their adjustment to bereavement, as evidenced by their acceptance of the patient's death. Lack of preparedness for death is a risk factor for complicated grief (Wen et al., 2021). Complicated grief is associated with many physical and mental health problems including increased rates of depression, anxiety, suicide, and substance abuse (Latham & Prigerson, 2004;Sung et al., 2011). As such, timely palliative care, which facilitates preparation, is also a public health matter. Our results demonstrate that clear information about what to expect in the future is a vital task accomplished by palliative care that may serve to prevent complicated grief. However, results also indicate that there can be a discord between patient and caregiver priorities for information and desire to discuss the prognosis. These information priorities can remain unspoken in the presence of patients who experience difficulties coming to terms with their changing health status and avoid discussions about end of life. Such discussions, however, are essential for achieving caregiver preparedness and need to be sensitively handled (Schofield et al., 2006;Steinhauser et al., 2015). Fourth, an eligibility requirement that participants have sufficient English language skills is likely to have prevented the participation of individuals from culturally and linguistically diverse backgrounds, which may have affected the themes that were identified. Last, the views of those other than spouses of the patients who may take on the role of caregiver were underrepresented in our sample. As the population continues to age, a growing number of children, parents, and siblings will find themselves in the position of taking on this role.
Further, consideration of these subgroups of caregivers is important as they juggle other social roles while providing care to a family member with cancer.

| CONCLUSION
This study demonstrated that palliative care can increase caregivers' sense of preparedness for providing the complex care needed by patients with thoracic cancer and that this can improve the experiences of both caregivers and patients. This underscores the importance for future research to extend its focus to identify possible positive aspects of palliative care for both patients and their care- givers. Finally, our findings underline the importance of integrating palliative care in routine clinical care for patients with advanced thoracic cancer, with the core goal of improving outcomes for both patients and their caregivers.