Introduction
Specialist palliative care for people with advanced cancer involves healthcare professionals working across inpatient, outpatient, and community-based settings, focused on treating complex symptoms to optimize quality of life for patients and caregivers (Gouldthorpe et al. Reference Gouldthorpe, Power and Taylor2023). Treatment decision-making for cancer patients and their caregivers in palliative care is challenging, particularly in cases of advanced cancer (Back Reference Back2020). Whilst some patients with advanced cancer make decisions about care with healthcare professionals without their caregivers, many patients also make decisions with their caregivers (Dionne-Odom et al. Reference Dionne-Odom, Ejem and Wells2019; Laryionava and Winkler Reference Laryionava and Winkler2021). Patients with advanced cancer, their caregivers, and healthcare professionals often differ in their preferences for patient symptom management and end-of-life care (Mulcahy Symmons et al. Reference Mulcahy Symmons, Ryan and Aoun2023; Levine et al. Reference Levine, Bainbridge and Pond2024). Discordance between the patient with advanced cancer and their caregiver in decision-making about patient treatment and care can be influenced by preexisting conflict between the patient and caregiver or result in new conflict between them (Fagan et al. Reference Fagan, Davies and Foley2024; Foley et al. Reference Foley, McCauley and McQuillan2025).
Healthcare professionals in palliative care operate within ethical frameworks that directly impact how they facilitate patient decision-making (Lombard Reference Lombard2018). Differences between patients’ and caregivers’ preferences for palliative care mean that healthcare professionals need to be sensitive to the viewpoint of both the patient and caregiver and, in tandem, facilitate patient autonomy in decision-making (Gomez-Virseda et al. Reference Gomez-Virseda, de Maeseneer and Gastmans2019; Houska and Loučka Reference Houska and Loučka2019). However, how healthcare professionals in specialist palliative care facilitate both the patient with advanced cancer and the caregiver when the patient and caregiver differ in their preferences for and/or decisions they make about care, is not well understood (Mulcahy Symmons et al. Reference Mulcahy Symmons, Ryan and Aoun2023). The primary objective of this study was to explore specialist palliative care healthcare professionals’ perspectives on discordance between patients with advanced cancer and their caregivers in the decision-making process for patient treatment and care. We sought to identify what healthcare professionals in specialist palliative care feel aids or challenges patients with advanced cancer and their caregivers manage their discordance, and what is helpful or challenging for health professionals themselves to manage discordance between patients with advanced cancer and their caregivers.
Methods
Study design
We conducted a qualitative study comprising focus groups with healthcare professionals in specialist palliative care to achieve our aims. We used a qualitative approach because we sought to be primarily inductive in our approach to better understand the phenomenon under study and to elicit responses that we could sufficiently probe into to capture the meanings and understandings that participants attached to their experiences (Green and Thorogood Reference Green and Thorogood2018). We worked from a framework in qualitative research that emphasizes the importance of relationality to ensure credibility and relevance (Timonen et al. Reference Timonen, Foley and Conlon2024). We referred to the Standards for Reporting Qualitative Research (O’Brien et al. Reference O’Brien, Harris and Beckman2014) in conducting the research. Ethical approval to conduct the study was received from the School of Medicine Research Ethics Committee at Trinity College Dublin in October 2024 (ref 3581).
Participant recruitment and sampling
Inclusion criteria for participants were that they were healthcare professionals working in specialist palliative care, had a minimum of 1 year of experience working in specialist palliative care, and had experience of engaging with patients with advanced cancer in specialist palliative care and their caregivers in the decision-making process for patient care. We sought to capture variation in participants’ experiences, and so we did not limit recruitment to specific specialist palliative care sites. We compiled a detailed project flyer (including eligibility criteria and contact details for the research team), which was circulated by a national clinical program for palliative care and by palliative care and hospice support organizations in Ireland. The project flyer was also posted by the research team on social media platforms LinkedIn (an online platform that connects professionals) and X (formerly Twitter). Healthcare professionals who were interested in participating contacted the research team.
The majority of people who contacted the research team upon hearing about the study (70%) participated in the study. Of the people who contacted the research team and who did not participate, three of them consented to participate, but their availability did not align with the scheduling of focus groups despite multiple attempts to organize a time to facilitate their participation. Three others did not reply to the research team after their initial expression of interest and the provision of a participant information leaflet to them. The final two people who expressed interest in the study and who did not participate did not meet the inclusion criteria for the study. Sampling was primarily purposive (Hennink et al. Reference Hennink, Hutter and Bailey2020) because we intentionally sought participants based on characteristics and experiences as detailed in the eligibility criteria, to yield information for the topic at hand. Sampling procedures also comprised snowball sampling, whereby a minority of the sample (n = 3) were recruited by a participant of the study. Participants who were snowball sampled met the inclusion criteria. A detailed participant information leaflet was provided to each person who contacted the research team and who was eligible to participate. Each person who participated in the study gave informed consent to participate by signing a consent form before participating in the study. Recruitment was carried out by the first author (JH) between February 2025 and May 2025.
Description of participants
The sample comprised 19 participants (17 women and 2 men) from different professions (nursing, medicine, occupational therapy, physiotherapy, speech and language therapy, medical social work, and nutrition and dietetics). Participants’ time working in specialist palliative care ranged between 3 years and 22 years, and the average time of participants working in specialist palliative care was 10 years. Most participants had worked in a variety of specialist palliative care settings, including hospital and hospice services. Hospice-based experience included a mix of inpatient hospice, day and outpatient hospice, and community-based hospice care. All participants had reached at least a senior and/or specialist grade in their profession. Participants worked in different regions across Ireland. The majority of participants worked in the Dublin region. Table 1 details the characteristics of the participants in full.
Table 1. Summary of participants
SPC = specialist palliative care.
Gender: women n = 17, men n = 2.
Regions (Ireland): Northeast (n = 1), Midlands (n = 1), West (n = 1), Northwest (n = 1), Midwest (n = 2), Dublin North (n = 7), Dublin South (n = 2), Dublin South and surrounding counties (n = 3), Dublin West (n = 1).
Data collection
Data collection consisted of 5 focus groups, and each participant participated in one focus group. We chose focus groups as a method for data collection because focus groups allowed participants not only to communicate their viewpoint, but also to understand and clarify their experiences in relation to one another (Tritter and Landstad Reference Tritter, Landstad, Pope and Mays2020). A focus group schedule containing open-ended questions was developed by the research team. Questions were formulated to meet the aims of the study. The questions were directly informed by a systematic review on concordance and discordance in decision-making between patients and caregivers in palliative care led by the last author (Mulcahy Symmons et al. Reference Mulcahy Symmons, Ryan and Aoun2023), our prior work on healthcare professionals’ perceived role in specialist palliative care in terms of supporting patients and caregivers in end-of-life care decision-making (Featherstone et al. Reference Featherstone, McQuillan and Foley2025), relational frameworks proposed for end-of-life care (Borgstrom Reference Borgstrom2015; Gomez-Virseda et al. Reference Gomez-Virseda, de Maeseneer and Gastmans2019), and by a systematic review conducted on shared decision-making in cancer palliative care (Rabben et al. Reference Rabben, Vivat and Fossum2024). The schedule was shared with participants prior to their focus group. Table 2 details the questions in the focus group schedule.
Table 2. Focus group schedule
The focus groups were organized by the first author (JH), and each focus group was conducted by the last author (GF) as moderator. The first author compiled field notes during and after each focus group to help contextualize the data for analysis. All focus groups took place online using the video conferencing platform Zoom. Online focus groups were chosen given the different geographical settings of participants and to make it more feasible to schedule a focus group at a time that was suitable for all participants of a focus group (Shelton and Jones Reference Shelton and Jones2022). Member checking of the data was done by the last author via confirming participants’ perspectives and seeking clarifications from them as appropriate during their focus group. All focus groups were recorded via Zoom and then transcribed by the first author. The focus groups were conducted between March 2025 and May 2025. The duration of focus groups ranged between 53 minutes and 71 minutes, and the average duration of the focus groups was 64 minutes.
Data analysis
The data were analyzed using thematic analysis (Braun and Clarke Reference Braun and Clarke2021). In the initial stage of the analysis, the focus group transcripts were read multiple times to ensure familiarization with the data. This was followed by the generation of initial codes, which entailed labelling salient data with a name that best reflected the data being coded. As coding proceeded, similar codes were aggregated to form tentative themes that explained participants’ perspectives on discordance between patients with advanced cancer and caregivers in the decision-making process, including barriers and facilitators for patients, caregivers, and participants themselves in terms of managing patient and caregiver discordance. We then refocused the analysis at the theme level by closely reviewing the themes to ensure that all data relevant to them were accounted for. The final stage of analysis comprised a full delineation and naming of the themes. The first author (JH) led the analysis and was supported by the last author (GF) at all stages of the analysis. Coding was cross-checked between the first and last authors to promote trustworthiness (i.e., rigor) in the analysis. The software program NVivo 14 (Lumivero 2023) was used as a tool to code the data.
Findings
Here, we report key themes that depict participants’ perspectives. The first section of the results details what participants felt aided or challenged patients with advanced cancer and their caregivers to manage their discordance in decision-making. The second section details what participants perceived as helpful or challenging for themselves to manage patient and caregiver discordance in decision-making. All participant quotations below have been pseudonymized and are tagged with a participant ID code (i.e., P1, P2) as shown in Table 1.
Section 1
Trust between patient, caregiver, and healthcare professional
Participants reported that trust between the patient, caregiver, and healthcare professional was key to patients’ and caregivers’ own ability to manage their discordance in decision-making:
I think it makes it better in the long run if people feel that they can trust each other and that we all can have those conversations … so that you can get to a point where they can agree (P6, focus group 2).
Central to trust between the patient, caregiver, and healthcare professional was a shared openness between the patient, caregiver, and healthcare professional. For example, in relation to making decisions about cancer treatments, P8 (focus group 3) commented:
The key point is that it [decision] is informed … that everyone is hearing that information, and everyone is hearing about the side effects, and everyone is hearing the benefits as well, and that it is an informed decision by all.
Consistent communication between patient, caregiver, and healthcare professional
Participants expressed that consistent communication between the patient, caregiver, and healthcare professional was also necessary for patients and caregivers to manage their discordance in decision-making:
A lot of decisions can be made on the back of information that probably hasn’t been dissected enough by the two individuals [patient and caregiver] … [but] I think to decipher the actual information to the two people and bring them together is needed. It is not just the patient that we are interacting with. It is all the family, and we are trying to manage expectations and differences (P2, focus group 1).
From the perspective of participants, key to dependable communication between the patient and caregiver, and healthcare professionals, was a genuine attempt to be respectful of each other’s wishes for care. For example, when explaining how patients and caregivers can best navigate discordance about patient place of death, P6 (focus group 2) shared:
Sometimes people [patients] will very strongly say at the start, I want to die at home. But the families are unsure that they can keep the person at home … You can’t whitewash things or say ‘that’s absolutely what we can do that for you’ because you might not be able to do anything of the sort. And it might not be the case that they can die at home because they have symptom issues that can’t be managed within the home, or the caregiver can’t manage the care … So these conversations need to be smart and respectful between all from the start.
Emotional and cognitive burden for both patient and caregiver
Participants perceived that emotional and psychological burden for both the patient and caregiver were significant barriers for patients and caregivers to accommodate each other’s preferences. For example, participants felt that patients’ decisions to opt against treatments that might otherwise prolong the psychological burden of living with metastatic cancer could inadvertently result in psychological distress for their caregivers and make it difficult for patients and caregivers to resolve their differences:
I think there is the potential for differences that cannot be resolved … When somebody [patient] has persistently declined treatment, but the family really feel that that’s something they should have done. That has the potential to create long-standing burden for the family … maybe a guilt of why they didn’t encourage them to have more treatment … I think sometimes their differences remain unresolved (P11, focus group 3).
Preexisting conflict between patient and caregiver
Preexisting conflict between the patient and caregiver was also perceived by participants to be a key barrier for patients and caregivers in terms of navigating and/or resolving their differences in decision-making:
I think that it is a most stressful time in their lives, all with different opinions, ways of coping … [Yet] sometimes they have grown apart … had disagreements … [and] I think the minuity of any disagreement is then sometimes magnified (P18, focus group 5).
In cases of preexisting conflict, participants indicated that the forced transition for a significant other into a caregiver role could make it more difficult for both the patient and caregiver to accommodate each other’s differences. P3 (focus group 1) explained:
I have been in several situations where the patient, for example, wanted to stop everything, stop all treatment but the family caregiver did not agree. Situations where the patient was like ‘Oh, can you stop my husband coming in today, I don’t have the energy for us, I don’t have the energy to fight him as well.’ A case I am recalling specifically is a husband who managed her [patient’s] cancer, her treatment and any trials. But to actually have to be her caregiver, was very, very challenging for him.
Section 2
Knowledge and professional experience
All participants agreed that the knowledge and experience gained from engaging directly with patients and caregivers in the decision-making process were instrumental when seeking to help the patient and caregiver manage their discordance in decision-making. Indeed, many participants indicated that experiential learning was equally or in some cases more useful to them than formal training or continued professional development they might otherwise undertake. For example, P1 and P14 disclosed:
I think that education is obviously important for half of it, but I think if you don’t have the foundation and the experience to build on, I don’t think the education on its own is sufficient (P1, focus group 1).
I definitely find the more that I do this, the more comfortable that I feel doing it … Every situation is so nuanced. I don’t think there is any kind of formal communication training that would be better than experience (P14, focus group 4).
Nonetheless, participants still recognized the value of research and evidence to manage patient and caregiver discordance. As P10 (focus group 3) commented:
I find that if there is maybe indecision or conflict … if I can bring them back to the rationale for my recommendation, that I can back it up with evidence, I feel people will respond to research and to what other outcomes have been. I don’t think I can ever just give a statement or an opinion without a backup.
Resilience and peer support
Having resilience to help the patient and caregiver navigate their differences in decision-making was important for participants. Professional resilience was centered on their ability to accept the potential limitations in their role:
Compared to other settings [services], you can’t just fix a piece of equipment. In palliative care, there isn’t that fixing so much. It’s helping people on their journey … which I think is a massive thing in palliative care (P16, focus group 5).
Participants frequently stated the importance of receiving support from colleagues in a multidisciplinary care setting and they strongly agreed that such peer support was essential to decipher how best to address patient and caregiver discordance in decision-making. P7 (focus group 2) explained:
I think good MDT collaboration is really key. If we are supporting each other and working together, and sharing the same message with people, just even having the support to debrief around things. I think that all really helps.
Ethical and legal uncertainties
Participants disclosed that they were sometimes conflicted about the ethical connotations of assisting patients and caregivers resolve their differences concerning patient treatment and care. For example, some participants felt that helping the patient and caregiver manage discordance could potentially undermine patient autonomy in decision-making. For example, P13 (focus group 4) voiced:
I think at the end of the day we are very much focused on patient autonomy and what is the most important thing to the patient. If they have been aligned with their caregiver all the way along and their caregiver has been their person who has been representing their wishes, that is fine. But I think that’s a different scenario where from the very get go, there is discordance, then that poses ethical issues.
Uncertainty with respect to decision-making legislation was also perceived by participants as a barrier to helping patients and caregivers manage discordance. Participants reported, for the most part, a lack of familiarity with assisted decision-making legislation in Ireland (i.e., Assisted Decision-Making [Capacity] Act) and an insufficient understanding of its impact or potential impact on decision-making in palliative care:
Obviously, I have done reading around the Act but I still don’t know if I feel comfortable applying it in a clinical scenario … I think if I had to see a consult this morning where that was involved, I would be worried that I wasn’t doing it properly … I am still not comfortable with the Act (P14, focus group 4).
Conflict in relations between patient and caregiver
Overall, participants felt that conflict in relations between the patient and caregiver hindered their own ability to help the patient and caregiver manage their discordance in decision-making. Assisting the patient and caregiver to manage any disagreement required careful deliberation on the part of participants. However, relational conflict between the patient and their caregivers could, in some cases, nullify their efforts to deliberate. For example, P17 and P14 disclosed:
[With conflict] I am unsure at what point do we ask people “How do you want to make decisions? Who would you like to be involved? … I am not sure (P17, focus group 5).
I think as time goes on and I have more experience, I see sometimes there’s maybe about 5% of the really complex cases where you just will not get the patient and the family caregiver on the same page (P14, focus group 4).
Discussion
To our knowledge, this study is the first to investigate specialist palliative care healthcare professionals’ perspectives on what facilitates or hinders patients’ (with advanced cancer) and caregivers’ ability to deal with their differences concerning patient treatment and care. In our study, from the perspective of healthcare professionals, open and trusting relationships between all (i.e., patient, caregiver, and healthcare professional) helped the patient and caregiver manage their discordance. Our findings pertaining to the importance of trust and of open and consistent communication between patients, caregivers, and healthcare professionals in the decision-making process for patients and caregivers resonate with other palliative care studies (McCauley et al. Reference McCauley, Ryan and McQuillan2023; Fagan et al. Reference Fagan, Davies and Foley2024; Featherstone et al. Reference Featherstone, McQuillan and Foley2025), including cancer-specific studies in palliative care (Ribi et al. Reference Ribi, Kalbermatten and Eicher2022; Rosa et al. Reference Rosa, McDarby and Buller2023).
Emotional and psychological burden for patients and caregivers in palliative care is well documented (Diaz-Frutos et al. Reference Diaz-Frutos, Baca-Garcia and García-Foncillas2016; Oechsle et al. Reference Oechsle, Ullrich and Marx2019). Our findings pertaining to emotional burden are novel in the context that discordance in decision-making between patients and caregivers can (from the perspective of healthcare professionals) exacerbate emotional distress for both patients and caregivers and make it more difficult for them to resolve their differences. Moreover, we identified that relational conflict (including preexisting conflict) and associated distress between patients and caregivers can make it challenging not only for patients and caregivers but also for healthcare professionals to manage patient and caregiver discordance in decision-making.
We found that healthcare professionals in specialist palliative care felt it necessary to be resilient when helping patients with advanced cancer and their caregivers manage their differences in the decision-making process for patient treatment and care. A scoping review on resilience building in palliative care professionals (Yongpraderm et al. Reference Yongpraderm, Inpithuk and Wongprom2025) identified that peer and organizational support were found to be supporting elements of resilience-building programs. We identified that, in addition to support from others, healthcare professionals’ resilience centered primarily on their ability to accept the potential limitations of their role in patient and caregiver decision-making.
As reported, participants placed significant weight on experiential learning when assisting patients and caregivers in managing their discordance in decision-making. These findings are consistent with other studies in palliative care, which have focused on the role of healthcare professionals in the decision-making process for patients with advanced cancer. Luna-Meza et al. (Reference Luna-Meza, Godoy-Casasbuena and Calvache2021) identified that healthcare professionals relied primarily on their professional experience when they approached end-of-life decision-making with patients who had advanced cancer. Rabben et al. (Reference Rabben, Fossum and Vivat2025) found that healthcare professionals needed to connect their formal education with experiential knowledge when guiding patients and caregivers in decision-making for advanced cancer treatments and palliative care. Our findings support the significance of experiential knowledge for healthcare professionals tasked with managing discordance in decision-making between patients with advanced cancer in palliative care and their caregivers. End-of-life communication interventions in advanced cancer that fully incorporate healthcare professionals’ experiential learning could serve to be effective for managing patient and caregiver discordance in decision-making.
Participants were conflicted by the possibility that helping the patient with advanced cancer and the caregiver negotiate or resolve their differences in the decision-making process could potentially constrain patient autonomy. There is already much debate as to what constitutes patient autonomy in palliative care (Wilson et al. Reference Wilson, Ingleton and Gott2014; Houska and Loučka Reference Houska and Loučka2019). Einstein et al. (Reference Einstein, Einstein and Mathew2015) reported that healthcare professionals’ conflicting feelings about autonomy for patients with advanced cancer impeded their ability to make recommendations about patient do-not-resuscitate status. The findings of our study point to the importance of deciphering in more depth how healthcare professionals in specialist palliative care construct patient autonomy. It is possible that formal training for healthcare professionals in specialist palliative care on legislation concerning patient decision-making could alleviate healthcare professionals’ concerns about patient autonomy when assisting patients and caregivers resolve differences in their preferences for and/or decision-making about patient treatment and care.
Strengths and limitations
We have identified from the perspective of healthcare professionals in specialist palliative care, key factors that aid or challenge patients with advanced cancer, caregivers, and healthcare professionals themselves, in managing patient and caregiver discordance in decision-making for patient treatment and care. The sample size was not large enough to ensure robust representation across each profession, and we did not manage to capture some other key professions in palliative care (e.g., psychology and pharmacy). A larger sample size to allow for robust representation across each profession, combined with recruitment of participants from professions that we did not capture, would have served to expand and further interrogate our findings. However, we managed to recruit healthcare professionals with sufficient variation to enable transferability of our findings to both similar and different contexts in specialist palliative care.
Conclusions
Our study provides valuable insights into healthcare professionals’ perspectives on discordance between patients with advanced cancer in receipt of specialist palliative care and their caregivers. Participants valued patient autonomy, but also the need to engage fully with caregivers when present in the decision-making process. Different perspectives exist in palliative care with respect to the degree to which caregivers should be involved in the decision-making process for patient treatment and care (Payne and Grande Reference Payne and Grande2013; Blackler Reference Blackler2016). Our findings suggest that healthcare professionals who specialize in the delivery of palliative care to patients with advanced cancer need to communicate as effectively with caregivers as they do with patients when helping the patient and caregiver resolve their differences pertaining to patient treatment and care. Healthcare professionals’ preference to consult with caregivers can run contrary to patients’ preference not to involve caregivers directly in decision-making about the patient’s treatments and supportive care. Further exploratory research is needed to decipher how healthcare professionals who provide specialist palliative care to patients with advanced cancer can effectively acknowledge and support the caregiver role and still deliver care that is respectful of the patient’s preferences.
The findings point to the importance of healthcare professionals being cognizant of the emotional burden shared between patients with advanced cancer in palliative care and their caregivers. We know that deterioration in the emotional health of people with cancer and who have palliative care needs can exacerbate emotional burden for their caregiver (Krug et al. Reference Krug, Miksch and Peters-Klimm2016). In our study, participants felt that discordance between the patient and caregiver in decision-making exacerbated distress for both the patient and caregiver. It is possible that interventions focused on assisting patients with advanced cancer and their caregivers in managing their differences in decision-making could serve to alleviate emotional burden for both the patient and caregiver.
Acknowledgments
The authors thank the All-Ireland Institute of Hospice and Palliative Care, the Irish Hospice Foundation, the National Clinical Programme for Palliative Care in Ireland, St. Francis Hospice, Ireland, Marymount University Hospital and Hospice, Ireland, and Trinity St. James’s Cancer Institute, Ireland, who assisted with distributing information about the study.
Author contributions
GF conceived and designed the study. NO’L contributed to the design. JH scheduled the focus groups, and GF conducted the focus groups with the assistance of JH. JH transcribed the focus groups and analyzed the data. Data analysis was supported by GF. GF wrote the manuscript, and JH, JL, SG, HF, and NO’L made contributions to the manuscript. All authors agreed on the final version of the manuscript.
Funding
This research was supported by a Trinity St. James’s Cancer Institute Cancer Research Stimulus (CREST) Award.
Competing interests
The author(s) declare none.
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