This study shows that early integration of palliative home care in oncology treatment is feasible and accepted for the most part by patients, family caregivers and professional caregivers. Most of the participating patients, family caregivers and professional caregivers valued the visits of the PHC team. Patients experienced feelings of empowerment, safety and control and reported to have received support to optimize their quality of life. However, important challenges were found with some of the study components that had an influence on the feasibility and acceptability of the intervention. Telephone-based contact appeared to be insufficient to support collaboration between disciplines and settings. Furthermore, the GP was not involved more in the care trajectories than before the EPHECT intervention and in most cases he or she had difficulties with practicing the role of coordinator of care.
Discussion of the main findings
The majority of patients wants to be cared for and die at home11,21. Whilst previous studies focused on integrating palliative care early in a hospital context, the EPHECT intervention aims to introduce palliative care early in the home context increasing the chances of dying at home22. Another important added value compared with some of the previous early palliative care interventions4,9,10 is that we performed a phase 2 study focusing on feasibility and acceptability of the intervention components, taking into account the experiences of patients, family caregivers as well as those of professional caregivers involved in the intervention. Performing a phase 2 study is more cost-effective than immediately carrying out a large-scale phase 3 RCT because now we can refine the intervention model based on the experiences of the participants of the phase 2 study14.
The drop-out of patients due to death during the intervention period is striking given the inclusion criterium of having an estimated life expectancy of 6 to 24 months. All participating oncologists reported that it was possible to estimate a life expectancy of 6 months, but they found a life expectancy of 24 months more difficult to predict. Previous research also shows that it can be difficult for oncologists to estimate survival and that oncologists might have the tendency to be overly optimistic23–25. Another possible explanation is that oncologists might have deliberately included patients with a shorter life expectancy out of fear to deprive the hope of patients with a longer estimated survival time, which has been reported as a barrier for early integration of palliative home care in several previous studies26–32.
The protocol of the EPHECT intervention included monthly consultations with a nurse of the palliative home care (PHC) team. However, two thirds of the participants received fewer consultations; the nurse of the PHC team visited the patients on average four times in the 6-month intervention period. According to patients and family caregivers as well as according to the PHC team, systematic visits are important at the beginning of the trajectory because these visits allow to build a relationship of trust. Once the relationship is built, monthly consultations are acceptable to patients but not necessary as long as the patient’s situation is stable. In our intervention protocol, we recommended to plan monthly visits to patients based on previous interventions showing a positive effect of systematic and early integration of palliative care on patient-reported outcomes.3–5, 7,9,10,33 However, it remains unclear if continuing systematic consultations at home is more effective than follow-up consultations by telephone as used in the ENABLE interventions wherein structured telephone sessions were organized by a PC nurse3,4. Future research is needed to investigate the optimal frequency, structure and implementation of palliative care consultations to improve the quality of life of patients with advanced cancer.
The home visits by the nurse of the PHC team were mainly focused on symptom management and illness understanding, but also psychosocial and existential issues were addressed, which confirms findings of previous intervention studies on early palliative care.34–36 As expected by the focus groups with PHC team in our previous research37, psychological issues are more prominent earlier in the disease trajectory. At the beginning of the intervention period the nurses of the PHC team feared that they would not be able to manage these issues because their previous experience was mainly focused on acute symptom management37. However, their self-efficacy increased during the intervention. In the information sessions for nurses of the PHC team we did not focus on communication but to be prepared for and feeling safe in having these conversations, we would recommend to take this into account in future trainings for palliative care teams.
This study also found that some family caregivers had the feeling that the visits of the nurses of the PHC team were mainly focused on the patient and that sometimes little attention was given to how family caregivers were coping with the disease of their beloved one. Furthermore, analyses of the HADS questionnaire for family caregivers show that initial scores on anxiety were high and remained high during the intervention period. Looking at previous existing interventions, explicit advise and guidelines on involving the family caregiver were rarely made. In the EPHECT intervention coping of the family caregiver was integrated in the semi-structured conversation guide as a topic needed to be discussed. However, analyses of the logbooks of the team confirm that this topic was the least discussed one during the conversations.
Family caregivers are often defined as unpaid, informal providers of care who have a personal connection to the patient and provide – especially when patients want to be cared for at home – one or more physical, social, practical and emotional tasks. By doing this, they are important actors in providing holistic palliative care38. However, taking up these tasks can cause anxiety and other several needs that are often undertreated or not addressed39–41. Palliative care teams need to focus more on supporting the family caregiver in caring for their beloved one, as well as taking care of their own needs.
Our intervention results shows that telephone-based contacts mostly failed to improve interdisciplinary and transmural collaboration. A recent influential Commission paper states that a multidisciplinary team approach, with systematic collaboration among team members from different professions within and across levels of care, is needed to strive for optimized integrated palliative care.42 A systematic review on interventions focusing on integration and oncology care reveals that of the seven included only one advised to routinely involve palliative care teams in multidisciplinary tumor conferences and in only three of them communication and collaboration between the palliative and the oncological service was established43–44. There needs to be a shift from coordinated care in which different teams are linked but working in separate structures to integrated care, in which professionals from different disciplines and settings are gathered together to discuss future care goals. To strive for optimized integrated care, the EPHECT intervention needs to be adapted on interprofessional collaboration.
Strengths and limitations
Performing a phase 2 study is more cost-effective than immediately carrying out a large-scale phase 3 RCT. Based on the results of this phase 2 study necessary adaptations can be made on the intervention model before testing it in a trial with a larger study population. Furthermore, conducting interviews with patients, family caregivers and professional caregivers provided clear insights on the feasibility and acceptability of the EPHECT intervention. However, several limitations exist with regards to the design of this intervention. First, by conducting a pre post design, we had no control group. This makes it difficult to make assumptions about the trends seen in patient and family caregiver outcomes. Second, because of the complex nature of the intervention, it is not possible to make conclusions about the effectiveness of individual components.