Caregivers' insights on the dying trajectory in hematology oncology

It is increasingly acknowledged in the research literature that palliative care is not offered to patients with a hematologic malignancy. The evidence indicates that patients are not dying at home or in the comfort of the hospice setting but are more likely to end up in the high-tech care of an intensive care unit. The holistic, compassionate care of the hospice/palliative care philosophy is not routinely made available to either these patients or the families who care for them. However, little is known about what the end-of-life experience is for such patients and their families and how they are managing to negotiate their dying experience in a system that is designed to cure not to palliate. In particular, there is a dearth of information on what happens to the caregivers during what is characteristically a prolonged and difficult period of sustained caring within the high-tech system. This discussion presents findings from recent research that is beginning to document the experience of the dying trajectory for patients from these diagnostic groups and their families. The hope and expectation from such research is that the information will make a contribution to building multidisciplinary plans of care for hematologic malignancies during the dying trajectory, to ensure that patients and their families are appropriately referred to the palliative system or, at least, are given sensitive palliative care within the curative system.