COSA 2015* There is nothing rare about dying! Supporting patients with rare cancers (#87)
From a palliative care perspective, the incidence of a cancer per se does not much influence care at the end of life, although this may in part depend on the phase of the illness trajectory at which specialist palliative care (SPC) assistance is sought. Using the goals of care framework, in the curative and palliative phases, any SPC advice or input will need to be informed by knowledge of the natural history of the disease. In particular it is important to collaborate with an oncological team that knows the rare tumour spread pattern, prognostic trajectory, response to treatments, and any known complications or associated syndromes. Patients will often be strongly attached to such teams, with good reason. Tumour behaviour that may predispose to complications such as bleeding, or endocrine and non-metastatic effects, for example, will need to be identified and planned for. In the terminal phase, experience and evidence suggests that diagnostic category is less important and there is a tighter range of final common pathway symptoms and clinical course as death approaches. The patient’s life journey, social and personal history often becomes more influential and the cumulative effects of advanced disease, especially inflammation, on a failing body gradually wear down life forces, will and energy.
