End-of-life trajectories of patients with haematological malignancies and advanced solid tumours 73 INTRODUCTION The disease trajectories of patients with a haematological malignancy (HM) are diverse; from diseases with an acute manifestation and poor survival, to those with a chronic nature. Treatments for HMs, even in patients with a poor clinical condition, are often intensive and are associated with a high risk of severe toxicity (such as graft versus host disease), infection and even death.1 Because disease trajectories of HM-patients are unpredictable and life-threatening, recognition of those who could benefit from a palliative care approach is complicated.2-6 As a consequence, HM-patients are seldom referred to palliative care consultation teams (PCCTs) or hospices; and if they are referred, they often die within days or weeks.2,7,8 It is known that palliative care needs of HMpatients are often unmet.9 According to the definition of the World Health Organization, the aim of a palliative care approach is to improve quality of life of both patients and family; in addition, it can concur with curative systemic treatment along the disease trajectory.10 This approach includes conversations about the end of life, supportive care, symptommanagement and psychosocial support.9 Insight into the end-of-life trajectory of HM-patients may help identifying cues for initiation of a palliative care approach. With the occurrence of disease progression or metastases, the palliative phase in patients with a solid tumour (ST) is easier to identify.6,7,11 According to Murray, their physical decline is stable and predictable until a steep and short period of decline before death. During the stable phase health care providers can proactively assess and support palliative care needs and the end of life.12 A palliative care approach has been shown effective in a various populations of ST-patients in improving quality of life, symptom burden and even survival.13-15 In HM-patients, palliative care can improve the quality of life after hematopoietic stem cell transplantation already after two weeks, as a randomized controlled study by El-Jawahri et al. showed.16 However, literature indicates that HMpatients need a different proactive approach for early palliative care than the disease trajectory of advanced ST-patients. Conceptual models of integrated palliative care for HM-patients depict palliative care as concurrent with curative care to aim for both cure and care.17-19 So-called trigger-events can help identifying HM-patients with palliative care needs to arrange appropriate care.20 An ED-visit is shown to be a potential trigger.21 Many HM-patients are urged to visit the emergency department (ED) with uncontrollable symptoms or a high symptom burden at home. Consecutively, they are often admitted to the hospital or even to an intensive care unit (ICU), where many of them die.2,22,23 These situations can diminish the quality of the end of life of HM-patients and their families.24 To measure the quality of end-of-life care provided to patients with incurable diseases, Earle et al. constructed the following indicators: receiving chemotherapy in the last 14 days 4
RkJQdWJsaXNoZXIy MTk4NDMw