This pilot study explored the feasibility of a study improving follow-up by PCPs of advanced cancer patients, including early palliative care and involvement in the definition of treatment care plan and advance directives.
The project as such failed, as there were very few patients recruited; suggesting that it is very difficult for PCPs to recruit patients suffering from advanced cancer.
However, the two half-day workshops were much appreciated and had a positive effect on PCPs’ attitudes and actions towards their advanced cancer patients. The qualitative analysis of the focus groups showed that PCPs felt empowered to take an active role in the follow-up of their patients during oncologic treatment. As described in the literature, PCPs felt responsible to initiate end-of-life discussions, arising from their role and expertise, and these conversations’ benefits (23, 24). PCPs felt better equipped in communication skills, and picked up cues more easily to address advance directives or end-of-life discussions, having practiced in role plays and made their own experience with patients. Training and coaching of non-palliative care clinicians such as PCPs can increase the practice of palliative care for the patients. Trained PCPs identify more palliative patients than do untrained PCPs and the non-palliative care clinicians report increased comfort and skill at conducting goals of care conversations (25).
For patients and PCPs alike, palliative care has a negative image as it is related to death. In the literature, PCPs’ barriers to communicating on these subjects were described as: concerns about patients’ readiness for end-of-life discussions or their potential psychological impact (17); family conflict (26); cultural factors (27–29); prognostic uncertainty (14, 30); and inexperience (23, 26). This prevents PCPs from addressing these difficult subjects, and in our study, probably contributed to their difficulties recruiting patients. Very interestingly, the definition of palliative care changed during the study for the participating PCPs: they reported investing their role as facilitator for a better definition of patients’ care preferences instead of having to address issues related to death. They felt able to avoid unnecessary treatments, and to allow respect of patients’ choices regarding their plan and place of care. Early palliative care has effectively been shown to be a new paradigm of oncologic treatment and palliative care, improving QOL, depression, prognostic understanding, and health service use in patients with advanced cancer (31).
PCPs also reported having experienced the specificities of interprofessional teams in palliative care. The interprofessional nature of palliative care teamwork with a view to whole person care has been described before. This teamwork differs from traditional models where the team is led by physicians, which are primarily focused on a disease process (32).
Regarding the advance directives and advance care planning, PCPs reflected how the study made them conscious of their role in actively helping patients define their preferences. The study led them to shift from the “after you” position in which PCPs expect patients to address the subject, while patients expect PCPs to address it first (33).
PCPs expressed how these rich discussions with their patients helped them to know them better, empowering them to become the patient’s advocate while facing specialists or hospital caregivers. Again, it underlined the new experienced paradigm for participating PCPs, shifting from helping patients to better die to a new paradigm in which they improve the quality of end-of-life.
When coming to the analysis of the difficult patient recruitment with the participating PCPs, it showed that addressing end-of-life discussions remained difficult. The simple words “palliative care” were difficult to express to patients and some participants suggested to rename palliative care as “patient support” or “support treatment” so as to smoothen the discussion; as previously described (23). Similarly, as described in the literature, the participating PCPs expressed their fear of stealing patients’ hope (regarding their treatment and life expectancy) when trying to address end-of-life issues. It made them feel uncomfortable in the role of “announcer of bad news” (33). The fear of adding the load for their already frail and very sick patients of confronting a stranger asking a range of questions also contributed to caution while recruiting patients.
As suggested by participating PCPs, further research could concentrate on the PCPs attitudes and change of roles as indicators for the impact of the intervention, as well as the completion of advance directives or advance care planning. This would encourage more training of PCPs and allow further action research that could facilitate early palliative care and PCPs involvement for advanced cancer patients.
Strengths of our study include the qualitative approach of PCPs feedback that gives a very rich view of their thoughts, attitudes and roles. In addition to the low participation rate, another limitation is the possible selection of PCPs interested in palliative care, that may limit the generalisability of the intervention’s impact.