General discussion 195 and providing support. This is in line with the Netherlands Quality Framework on palliative care, which states that shared decision-making in palliative care is “the continual process in which care is tailored to the personal situation and achievable values, wishes and needs of the patient and family”.19 A power shift in the patient-clinician relationship towards patients and family is therefore desirable and warranted. Patient empowerment is defined in various ways.38 One of the definitions is that patient empowerment is “an approach to health promotion involving patient autonomy, ensuring the patient is actively involved in their care, relying on an achievement of self-efficacy or having a sense of control in one’s life.”34 Empowering a patient can mean that the patient had been disempowered in the first place. Disempowerment may hinder their participation in decision making about the palliative phase. This experience of disempowerment corresponds with Rolland’s ‘crisis phase’ of the ‘Time Phases of Illness’ in his integrative treatment model.39 In this model, patients and family go through steps aimed at socialization to the new palliative diagnosis, which includes seven developmental tasks patient and family need to go through. Examples of these tasks are developing a meaning of the illness so that patients and family can stay in control; accepting that the illness is permanent; and learning to live with the life-limiting illness and problems associated with the illness. Patients and family are vulnerable during these developmental tasks and need advice from the clinicians to complete them. Effective communication which effectively enhances empowerment has several benefits for patients.40 It is demonstrated that patients found they were better able to adapt to losses, including preparing for deterioration, management of personal issues and changing of priorities in life. They felt they were better capable of continuing their lives.41 The study in Chapter 7 demonstrates that patients lost empowerment at the moment they found out they were in the palliative phase of their disease and that they felt more in control by using the question prompt list. They knew which issues were on their minds and which questions they wanted to ask. They felt they were better able to manage their lives because they could ask purposeful questions. As a result, the clinician’s role shifts from discussing what they think are preferences of patients and family, to helping patients and family discovering their own preferences for care. Chapter 6 shows that a question prompt list is a valuable addition to assessing symptoms, because it allows patients and family to not only indicate their current problems, but also their worries. These results show that our question prompt list enhances patient and family empowerment. Non-specialist clinicians indicated in Chapter 7 that using a question prompt list provides them with an overview of the information needs of patients and family and may help deepening their consultations. In this way, clinicians can give them tailored advise, so 8
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