Mary Joanne Verhoef

Chapter 8 210 Core principles of proactive palliative care • Promoting knowledge and self-initiation in clinicians, patients, and family • Intention to produce good results and avoid (future) problems • Thinking ahead to be able to act before things happen This thesis only included studies relevant to individual palliative care consultations. To really improve proactivity in the triad patients, family and clinicians, community-based interventions should be initiated. When this thesis was being written, the SIRE (Stichting Ideële Reclame) initiated nation-wide advertisements about talking about death on television, radio, and the internet. References to websites and other sources supporting people to get more knowledgeable about palliative care are essential nowadays to reach people. Indeed, first knowledge should be promoted before self-initiation, intention to produce good results and avoid (future) problems, and thinking ahead to be able to act before things happen, can be achieved. 8.5.2 Intention to produce good results and avoid (future) problems 1. Quality indicators for palliative care in patients with a haematological malignancy The concept of palliative care is often explained using the model of Lynn and Adams and the model of Murray (Chapter 1). These models assume that the palliative phase includes a phase with disease-modifying treatment and/or symptom-directed treatment, terminal phase, and bereavement care. There are in general three illness trajectories, namely advanced cancer, organ failure and frailty, and the multidimensional needs of patients and family can change along the illness trajectory. The illness trajectory of patients with a haematological malignancy does not fit these models. The model proposed by Button et al. is more appropriate for patients with a haematological malignancy (paragraph 8.3.3.1).58 This model can be applicable not only for patients with a haematological malignancy, but also for patients with an unpredictable illness trajectory with a substantial risk of death because of either the illness or the treatment. The Button model should be part of generalist palliative care education since it raises awareness for a concurrent palliative care track while undergoing curative treatment. In quality improvement projects, haematology specific quality indicators should be used. In 8.4.2 is discussed how a list of validated haematology quality indicators can be derived. In addition, in aiming at a proactive and person-centred care, the outcome of a quality improvement project can be the goal concordance of treatments with the wishes of patients and family.

RkJQdWJsaXNoZXIy MTk4NDMw