Physicians' perceptions of patient participation and the involvement of family caregivers in the palliative care pathway

Abstract Introduction Patient participation is essential for quality palliative care, and physicians play a crucial role in promoting participation. This study explores physicians' perceptions of patients and family caregivers' involvement in the different phases of the palliative pathway and employs a qualitative design with thematic analysis and a hermeneutic approach. Methods A purposive sampling included physicians who worked in different phases of the palliative pathway. In‐depth, semi‐structured interviews were conducted with 13 physicians in Norway between May and June 2020. Results Three main themes illustrate physicians' perceptions of patients' and family caregivers' involvement: (1) beneficence for the patient and the family caregivers in the early phase, (2) autonomy and shared decision‐making in the middle phase, and (3) family involvement in the terminal phase. Conclusion The physicians perceived bereavement conversations as essential, particularly if the pathway had been challenging. They also perceived patient participation and family caregivers' involvement as contextual. The results reveal that participation differs across the different phases of the palliative pathway. This type of knowledge should be included in the education of health‐care professionals. Future research should explore elements vital to successful patient participation and family involvement in the different phases of care. Patient or Public Contributions Family caregivers were involved in a previous study through individual interviews. The same interview guide used for the family caregivers was used when interviewing the physicians. The family caregivers' contribution led to nuanced questions in the interviews with the physicians, questions leaning on their stories told.


| INTRODUCTION
Patient participation is a core element of patient-centred palliative care, [1][2][3][4] and patients are encouraged to participate in decisions about their health care. [5][6][7] Patient participation and involvement are key elements of good palliative care and follow-up. 3,[8][9][10] However, unmet needs related to patient participation and family caregivers' involvement have been reported. 3,11,12 Patient participation begins with health-care professionals' understanding their patients' preferences and needs for care, creating good relationships and exploring each patient's ability to participate, regardless of their illness and resources. [13][14][15] Thus, physicians should encourage patients to communicate their values and preferences and allow shared decision-making to increase their awareness and understanding of treatment options and possible outcomes. 16,17 However, primary care physicians may face challenges in end-of-life care, especially in communication and pain relief 18 because their roles are not well defined and may vary widely depending on the cases. 19 This study examined physicians' perspectives on patient participation and family caregivers' involvement in palliative cancer care. The palliative care pathway was divided into three phases. The first phase comprised the initial days following the diagnosis of an incurable disease and began at the point where subsequent treatment was determined to be palliative. The middle phase constituted the time between the early phase and the terminal phase, and the terminal phase comprised the last weeks and days before death. 20

| Background
Life-threatening illness is difficult for patients. [21][22][23][24] A focus on symptom relief as well as psychosocial and spiritual aspects are essential elements of palliative care. 7 Patient-centred care also strengthens patients' autonomy. 10 Shared decision-making can improve patient and family involvement; however, physicians and health-care personnel may not be aware that participation in decision-making could be hindered or encouraged based on how they promote options or roles. 8,25 Physicians must offer patients and family caregivers an opportunity to discuss end-of-life issues. 5 Health-care providers often do not ask patients whether they want to participate, and patients do not express the kind of roles they want to play in the decision-making process. 8,25 According to Tamrisa et al., 26 most physicians prefer honest and open communication when discussing patients' concerns and expectations, whereas others choose to adhere to treatment protocols, without explaining the alternatives in the belief that they are giving patients false hope. 27 Patients who want to be involved and play an active role in the decision-making process may find it challenging when decisions are delayed and alternative treatment options are not discussed. 1,26 Several communication gaps have been identified in cancer care, including shared decision-making, unmet needs, open communication 28 and the opportunity to be heard without being judged. 29 Inadequate information provision, lack of practical guidance and insufficient support from health-care professionals are other challenges. 30 Essential competencies for patient and family satisfaction include prognostication, conflict mediation, empathic communication and family-centred care. 9 Family caregivers play a critical role in the decision-making process, with patients often taking the final decisions after consulting with their family caregivers. 31 While patients, their families and health-care professionals may have different views on prioritizing the different palliative care dimensions, 32 they need to cooperate to contribute to the patient's wishes and needs. 3 It is also essential to initiate end-of-life care early because delayed communication may lead to missed opportunities. 33,34 Advance care planning (ACP) and general practitioners' (GPs) involvement have improved palliative care. GPs are central in introducing ACP; simultaneously, GPs have also reported difficulties in introducing ACP when patients are receiving treatment in a hospital. 35 Introducing ACP can be an autonomous decision, as some patients may not be willing to have that conversation. 36 Furthermore, family caregivers report a lack of involvement in and preparation for the dying process. 12 Thus, there is a gap between the guidelines and the emotional and psychological support received in palliative care. 12,33,37 In all the three phases of palliative care, the patients are primarily at home, which is recommended. 38,39 In home-based care, patients and family caregivers rely on GPs and nurses' medical proficiency, availability, person-focused approach and proactiveness. 13,40,41 The home-based care provided by physicians and contracted professionals outside the family could also effectively support home deaths. 42,43 We believe that greater insight into palliative care participation will be useful in improving care. As physicians play a key role in ensuring quality palliative care and promoting patient and family involvement, we examined how physicians perceived patient participation and family involvement in the different phases of the palliative care pathway.

| Ethical principles and theoretical framework
We applied the four principles of biomedical ethics 44 and the approach of Thompson et al. 45 to explore patient participation. These ethical principles and the theoretical framework of patient participation were appropriate and were used as theoretical lenses in the analysis.
Four principles of health care that form a moral framework are Therefore, the health legislation's provision on consent competence might be necessary to practice autonomy. This principle obliges disclosing information to probe for and ensure understanding and voluntariness, and to provide adequate decision-making; (2) Nonmaleficence: refers to protecting against unnecessary harm. Assessment and treatment are burdensome and can involve a health risk. Therefore, the risk of injury should be less than the expected benefit of examinations, treatment, and other healthcare; (3) Beneficence: refers to providing benefits and balancing benefits, burdens and risks.
One ought to prevent and remove evil or harm. One ought to perform and promote good. In addition, beneficence balances the utility value and benefits of treatment choices against the risk and strain to which the person is exposed; and (4) Justice: refers to fairness in the distribution of benefits and risks. It is about the management and distribution of opportunities, health benefits and resources. Costs and resources should be distributed in a fair way and managed with the intention to treat cases equally. 44 We used five levels of involvement that ranged from noninvolvement to full autonomy, based on the framework of Thompson et al. 45

| Design
The study employed a qualitative design using thematic analysis 46,47 and a hermeneutic approach. 48,49 Interviews were based on open-ended questions, 50 and the consolidated criteria for reporting qualitative research checklist was used to complete the reporting. 51

| Participants
Thirteen Norwegian physicians treating palliative care patients were recruited through purposive sampling. 50

| Data collection
The interviews took place from April to May 2020 and were conducted by the first author. Owing to the COVID-19 pandemic, all the interviews were performed individually through video meetings.
An interview guide with open-ended questions ( Table 2) was developed based on the study's aim and previous research. 12,20,50 The questions focused on how physicians perceived patient participation and family caregivers' involvement in the palliative pathway. The interviews lasted between 35 and 60 min. What is important about the nature of the care offered in different phases of the palliative pathway?
What challenges and ethical dilemmas did you experience?
Do you want to add something else?
When the interviews produced no new information, the authors discussed the possibility of saturation, and found the data to be rich and dense, and saturated with preliminary themes. 52,53

| Data analysis
The interviews were audio-recorded and transcribed verbatim by the first author. All the authors read the interview transcriptions to gain a holistic impression of the data. 50 A thematic analysis and the six steps of Braun and Clark 46,47 were used to analyse the data. First, all the authors read and reread the transcribed interviews and noted their initial ideas. We also discussed their overall understanding of the data set's coding phases.
The first author coded the interviews related to participation in the early, middle and terminal palliative care phases. Second, the authors constructed a coding tree guided by the four ethical principles (i.e., autonomy, nonmaleficence, beneficence and justice) 44 and the involvement perspective of Thompson et al. 45 Third, the authors identified key quotations. In the fourth step, the authors discussed subthemes and themes. The analysis was inductive as well as deductive. We worked back and forth between the subthemes and themes until we had established a comprehensive set of themes.
Then deductively, we looked back at the data from the themes to determine if more evidence could support each theme. Then the subthemes were abstracted into three main themes, which illustrate physicians' perceptions of participation in the different phases of the palliative pathway. In the fifth step, the authors validated the naming of the themes through communicative validity. 50 In the last step, the first author wrote down the results, based on feedback from the other authors.
The analyses employed a hermeneutic approach, recognizing the influence of preunderstanding on data interpretation. 49 We developed a new understanding through group discussions in which all the authors were engaged. 50 The first author has worked as an oncology nurse in primary care for 10 years. Leaning on a hermeneutic approach, her preunderstanding influenced data interpretation. 49 The hermeneutic circle conveys the meaning that the parts depend on the whole and the whole depends on the parts. 48

| Ethical considerations
The project adhered to the guidelines for research ethics laid down by the Declaration of Helsinki. The study was considered by the ethics committee and did not need approval.
All the physicians were given oral and written information on the study and could withdraw at any stage. The first author obtained written informed consent from participants before the interviews. All data were anonymized.

| FINDINGS
Thirteen physicians were interviewed (Table 1). Three themes related to the different phases in the palliative pathway were identified: (1) beneficence for the patient and the family caregivers in the early phase, (2) autonomy and shared decision-making in the middle phase and (3)

| Creating security for patients and family caregivers
The physicians conveyed that it is important for patients and family caregivers to know who was responsible for the treatment, the

| Patient and family caregivers' involvement
According to the physicians, the middle phase could be a comparatively calmer period in which the patient and family caregivers prepare for the death. Patient autonomy was considered particularly important: 'It is the patients who own this process' (8).
The physicians considered that ACP was a good tool.

| Continuity of care
The physicians emphasized that building trust was important. One GP explained how he actively worked to create trust and security by having routine consultations with patients: 'I think being assigned appointments regularly makes it easier for the patient, and they do not feel that they are taking my time. I am the one who gives the time. If they do not want the consultation, they actively cancel' (8).
The physicians felt it would be easier to outline responsibilities and create security if patients did not constantly have to deal with new health-care personnel in the hospital and the municipality.
Information could be overlooked if there was not enough confidentiality around crucial conversations.
The physicians working in palliative teams emphasized the importance of working in multidisciplinary teams. They highlighted that the nurses often had an important role in coordinating the care and the treatment.

| Family caregivers as resources
The physicians highlighted family caregivers as a crucial resource in palliative care and emphasized the need to spend time with them.
The closer the patient was to the terminal phase, the greater the need to cooperate with family caregivers. Close cooperation was also crucial when death at home was planned: 'Family caregivers must be in place. It is so easy and so difficult at the same time' (7).

| Early involvement of family caregivers
The physicians highlighted how, in the terminal phase, they tried to support family caregivers emotionally and identify common perspectives and solutions. Family caregivers' involvement in the palliative pathway was akin to living the grieving process: 'The most important thing we can do to help them cope with their grief is what we do along the way. If we did a bad job, a bereavement conversation will not save the grieving process' (9). Family caregivers should feel validated, heard and respected throughout. In this process of

| Autonomy maintained by family
In the terminal phase, the family often maintains the patient's autonomy. The physicians depend on the information provided by family caregivers to consider the patient's interests. Physicians said it was essential to clarify with the patient, early in the pathway, that the physicians would contact family caregivers when the patient was tired or otherwise indisposed.
Family caregivers were described as a link between the patient and the physicians; thus, a good relationship with family caregivers was vital: 'We used to support the family caregivers and help them understand. Sometimes the symptoms bother the family caregivers more than they do the patient' (2). Additionally, regular follow-ups and a continuous flow of information provision were necessary to satisfy family caregivers' concerns. Some patients may find relief in letting family caregivers play a more prominent role. Physicians also noted family caregivers' fear of not being able to adapt to progressive disease symptoms and not being able to cope with a worsening situation. The terminal phase could be challenging regarding symptom relief and the level of care required from family caregivers.

| Bereavement conversations
The We found differences among physicians in how they viewed the decision-making process. Sometimes they prioritized autonomy and encouraged a high degree of patient involvement, while at times, they had a mildly paternalistic attitude. Thompson et al. 45 demonstrated how involvement differs in terms of context, levels and components.
In our findings, physicians made some treatment choices to avoid unnecessary risks to the patient. This is consistent with previous findings. 16,44 The physicians in our study highlighted patient autonomy, especially in the middle phase, although this could conflict with the ethical perspective of beneficence to the family caregivers. 44 Extant studies found that patient-centred care could be at the expense of family caregivers, who tend to be neglected. 12,32,37 We found that physicians are aware of the significance of involving the patients and family caregivers. In contrast, prior studies have shown that physicians do not meet the patient's and family caregivers' information needs. 1,26,28,29 The physicians in our study also discussed a shift in autonomy from the patient to the family caregivers, in which they played an active role in helping patients hand over the authority to make choices to the family caregiversdoing good to the patient was the reason for this initiative. 44 Previous research has also indicated limited involvement of family caregivers and a lack of preparation for the terminal phase. 12 The physicians noted that involving family caregivers early in the palliative care pathway and ensuring that they closely monitored the process led to better grief processing. Many believed that the need for bereavement conversations had diminished, reflecting an increase in family caregivers' involvement and adaptation.

| Strengths and limitations
One of the strengths of this study is the physicians' long-term experience in palliative care. The physicians were both men and women of various ages, worked in primary and specialist care, and were from both rural communities and larger cities, and from local and regional hospitals. Gender analyses were not in focus in the study. Men and women participated in the study because we wanted variation and, our theoretical perspectives do not focus on gender. Although this study was conducted in Norway, the findings may be transferable to other countries with similar health-care environments. 54 A limitation might be that the first author has worked as an oncological nurse in primary care for 10 years, and has a preunderstanding. However, all the authors collaborated in the interpretation and development of a shared understanding of the data, ensuring a holistic perspective. 49,50,54 Additionally, the theoretical framework 44,45 strengthened the transparency of the interpretation. 54 Observations in addition to interviews could have been applied to collect data. 45 Method triangulation in further research might be valuable to develop a more comprehensive, consistent and coherent understanding of how patient participation and family involvement occurs in practice.

| Implications
This study provides insight into the complex concept of participation and the four ethical principles: autonomy, beneficence, nonmalefi-

| CONCLUSION
The physicians perceived that patients' participation and family caregivers' involvement differ across the various phases of the palliative pathway. The ethical principle of beneficence for patient and family caregivers is seen as most important in the first phase. In the second phase, the physicians saw autonomy and shared decisionmaking as crucial. In the terminal phase, the physicians perceived family involvement as essential. The physicians were concerned with patient participation and family involvement throughout the palliative pathway. The study showed that the physicians perceived patient participation and family caregivers' involvement as contextual and that participation differs across the different phases of the palliative pathway. All authors agreed to be accountable for all aspects of the work.