Chapter 7 156 Patients, family, and patient/family advocates indicated that a proper introduction to palliative care and the QPL is key: both should be explained to patients and family before handing out the QPL. Additionally, they must have enough inner space, time, and energy to use it (Table 3). Effective communication about palliative care has been shown to depend on the context, disease stage, a good patient–clinician relationship, mutual understanding between patients and clinicians and ‘readiness’ of patients and family.31,33 This was confirmed by our findings: in order for the QPL to be effective, several barriers have to be overcome in clinical practice. Clinicians participating in our study provided suggestions for dealing with these barriers, which we used to develop an instruction leaflet for clinicians. In our study, a minority of patients were not yet able to identify themselves as palliative care patients, but they found the QPL no more unsettling than their current situation, which is in line with other findings.16 Fliedner et al. demonstrated that although patients with advanced cancer found early palliative care consultations emotionally challenging, a QPL allowed them to plan for the future without considering use of the QPL itself burdensome.34 Gatekeeping by clinicians may even disempower patients and family in expressing their needs. Therefore, clinicians should not hesitate to offer patients and family a QPL to prepare their consultation; patients and family can decide for themselves whether or not to use it. To date the QPL has only been used in the setting of specialised palliative care, but the diverse group of non-specialist clinicians who participated in our study indicated that the QPL could also be used by non-specialist clinicians. They indicated that they would refer to the appropriate palliative care clinician if patients and loved ones have complex questions or problems. This corresponds with the palliative care model described by Henderson et al.: most palliative care is provided by non-specialist clinicians, and palliative care specialists have the responsibility to educate and support their non-specialist colleagues.35 This model of palliative care allows a more integrated approach with current care and early discussion of the wishes, needs and values of patients and their family. To make the QPL more suitable for use by patients of non-specialist clinicians, we used their input to adapt the QPL accordingly. Strengths and weaknesses This qualitative study evaluating the use of a palliative care QPL included a triangulation of 35 semi-structured interviews with patients, family, and clinicians and 32 audiotaped consultations. Including only patients who used the QPL for individual interviews may have resulted in an overly optimistic view of the QPL. We had decided to include patients with a life expectancy of at least 3 months; earlier experiences with including patients for who had a shorter life expectancy, showed them to be often too tired to participate in a qualitative interview, which makes including them unethical. This may have led to an over-representation of perspectives of patients and family in relatively good health, and to the inclusion of relatively more patients with a diagnosis of cancer compared with
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