General discussion 197 In Chapter 4, the causes of death of patients with a haematological malignancy were disease progression (46%), treatment toxicity (40%), or both (9%), illustrating this particular endof-life trajectory. These illness trajectories are often unpredictable with a sudden decline while patients are undergoing intensive treatment with curative intent. Because of the typical illness trajectory, one may wonder whether the common indicators of Earle et al. are appropriate for measuring the quality of end-of-life care in patients with a haematological malignancy.55 Haematologists do not necessarily believe hospice admission early in the illness trajectory is an indicator of good quality of end-of-life care, because hospices or hospice care often cannot provide blood transfusions in cases of severe symptoms of anaemia, such as exhaustion, dyspnoea and bleeding.56 More often, patients with a haematological malignancy will choose the possibility of blood transfusions over hospice care, risking of hospitalisations and admission to the ICU.56 A study by Odejide et al. showed that haematologists found that the following quality indicators were considered acceptable by haematologists: • Hospice admission > 7 days before death; • No chemotherapy ≤ 14 days before death; • No intubation in the last 30 days of life; • No cardiopulmonary resuscitation in the last 30 days of life.57 These indicators for quality of care represent events that should be prevented, but do not explain what quality palliative care looks like. A two-track approach can support a proactive palliative care approach in haematology. Figure 1 in Chapter 4 illustrates that curative care and palliative care should be concurrent because patients can have needs fromboth tracks. The curative track focusses on cure, whilst the palliative track focusses on the quality of life. Button et al. suggested an alternative disease trajectory model for haematological malignancies.58 This model assumes that all patients with a haematological malignancy, no matter if the treatment is of curative or palliative intent, need a palliative care approach. 484 Palliative Medicine 33(5) and takes into account the vastly different illness trajectories experienced by people with a haematological malignancy. A simple and practical conceptual approach to explaining palliative care is required to facilitate understanding, acceptance and active participation with early palliative care integration for people who may also have a chance of cure or long-term remission. A conceptual model developed by Bruera and Hui7 for care model (displayed in Figure 1) and Bruera and Hui’s conceptual model to palliative care integration may help to address these issues by providing approaches that are well-suited to the unique illness trajectory of people with a haematological malignancy. The Bruera and Hui’s7 model shares a similar concept to ‘rainy day thinking’ or the ‘hope for the best … prepare for the rest’ approach where identifying people at risk of Diagnosis Death or completion of treatment Survivorship care Bereavement care Intent of care - as per clinical scenario and patient/family need/preference Palliative care Curative care Figure 1. Modified model of palliative care for people with a haematological malignancy. Fig. 1. Modified model of palliative care for pe ple with a haematological malignancy. From Button E, Bolton M, Chan RJ, Chambers S, Butler J, Yates P. A palliative care model and conceptual approach suited to clinical malignant haematology. Palliative Medicine. 2019;33(5):483-485. doi:10.1177/026921631882448958 8
RkJQdWJsaXNoZXIy MTk4NDMw