YO21 - Faith, hope and reason: What to do when your 29 year old patient with recurrent medulloblastoma declines any curative attempt at treatment

Date 18 December 2016
Event ESMO Asia 2016 Congress
Session Poster lunch
Topics Cancer in Young Adults
Psychosocial Aspects of Cancer
Myeloproliferative Neoplasms
Central Nervous System Malignancies
Presenter Aaron Tan
Authors A. Tan1, I. Kerridge2, N. Pavlakis1
  • 1Medical Oncology, Royal North Shore Hospital, 2065 - St Leonards/AU
  • 2Haematology, Royal North Shore Hospital, 2065 - St Leonards/AU


Case Summary

A university educated 29 year old Caucasian man, the son of a doctor, was diagnosed 10 years prior with a cerebellar medulloblastoma. Surgical resection was followed by adjuvant chemotherapy, craniospinal radiotherapy, and ‘rainy-day’ collection of peripheral blood stem cells for potential autologous transplantation if he relapsed. He then underwent regular MRI surveillance. He was of Christian belief and married. Eight years post diagnosis, he developed asymptomatic intracranial and lumbar spinal disease and was recommended for high-dose chemotherapy and autologous stem cell rescue aiming for remission and cure. He had several discussions with the proposed treating haematologist and regular follow up with his medical oncologist. He declined active treatment, with a strong belief that prayer would heal his disease. He gradually developed progressive neurological symptoms, continued to deteriorate and died in a palliative care unit 18 months after recurrence.

This highlights the ethical problem of physician helplessness when a patient refuses active treatment. Patient autonomy is a principal tenet of modern oncology and distinguishing an expression of different attitudes and values from an irrational preference is important. Indeed what constitutes a rational choice is difficult to define. For curative treatments, physicians may have ‘goal oriented’ rationality where cure is emphasised, whereas patients may have ‘value oriented’ rationality where their value system is more important.

In Australia, legally competent patients have a right to refuse treatment, even if the decision is considered ‘not sensible, rational or well considered’ and may lead to death or serious injury. Our patient fulfilled all criteria for capacity and competence. Cases such as these trouble us – not simply from the refusal of treatment that may be life-sustaining or saving, but as they stretch the boundaries of rationality and the grounds upon which such decisions are made, are subjective, inaccessible to reason and (often) inconsistent with our own value systems. It is important to avoid imposing a physician’s own beliefs, to maintain a trusting relationship and preserve patient autonomy.