Chapter 4 84 Integrated care Patients with a haematological malignancy and: • Poor prognosis, or • Treatment with a high risk of (severe) toxicity, or • Uncertain response to treatment, or • Unpredictable disease trajectory Palliative care approach Focus on quality of life • Continuous assessment of patient’s values, wishes and priorities in life • Involve family • Enable patient and family to define and discuss goals and preferences for future medical treatment and care = advance care planning • Symptom management and supportive care (proactive and four-dimensional) Curative care approach Focus on cure • Informing about risks and benefits of treatment • Assessment of the physical and psychosociological capacity of the patient • Informing about possible future scenarios of the disease trajectory • Disease treatment “Hope for the best and prepare for the rest” Continuous evaluation of goals of care Shared decision-making about treatment and needed care Figure 1. A proactive integrated care approach for patients with a haematological malignancy: a curative and a supportive track. Our pragmatic study provides insight into the care for HM-patients visiting the ED in their end-of-life trajectory and compared is with the disease trajectory of ST-patients. The inclusion of only those patients who died within 3 months after the ED-visit is inherent to the mortality-follow-back design of this study, but it has introduced selection bias. Although data were collected from 2011-2013, they are still relevant since new lifeprolonging systemic treatments only further emphasize the need for an integrated care approach. Further research should be directed to identifying the specific palliative care needs of HM-patients and their families and developing interventions to address to those. CONCLUSION HM-patients who visited the ED in the last 3 months of life are more often hospitalized and die in-hospital compared to ST-patients. To improve care during the end-of-life trajectory, especially for HM-patients, palliative care should be timely integrated in standard oncological care. Authors’ Note As approved by the Medical Ethics Committee of the LUMC and according to Dutch and European law, informed consent from patients was not necessary because of the retrospective design of this study.
RkJQdWJsaXNoZXIy MTk4NDMw