"The Histology is Worrying" An autoethnography of ovarian cancer diagnosed in pregnancy

Abstract

Cancer diagnosed during pregnancy is a rare event with the incidence ranging from 0.02 to 0.1%. The management of gynaecological cancer diagnosed during pregnancy is particularly complex because it may affect not only the pregnant woman in general, but directly involve the reproductive tract and foetus. There is a small, principally observational, medical literature reporting the diagnosis and treatment of gynaecological cancer during pregnancy, but no published reports of patient experiences in this clinical context.

This thesis is based on the single case of a pregnant woman diagnosed with a rare form of ovarian cancer during pregnancy. More uniquely, the pregnant woman was also a doctor specialising in Obstetrics and Gynaecology and appreciated the very limited evidence available to support treatment decisions. Therefore, the case offered an exceptional opportunity to investigate the tensions between the patient and medical perspectives in a rare clinical presentation of gynaecological cancer diagnosed during pregnancy.

In order to obtain an in-depth appreciation of these tensions, the research utilised case study methodology. Two voices (doctor and patient) and two data sources (a medical case report and an autoethnography respectively) are juxtaposed to compare and contrast the crucial differences between the medical and the patient perspectives. Four themes were derived from the thematic analysis: Roles, Power and Vulnerability, Brutality and Compassion, and Life and Death.

There were multiple instances where the active role of the powerful doctor contrasted with the (sometimes enforced) passive role of the patient, rendering the patient physically and emotional vulnerable. For the pregnant woman, her vulnerability is increased as she makes decisions that affect her baby and herself. In cancer treatment, the pregnant patient may undergo a series of brutal investigations and therapy in the hope of a good outcome for both herself and her baby. Doctors may not realise how harsh the treatment is, but doctors can make the brutality of medicine bearable by compassionate care.

Focusing on the theme of Brutality and Compassion the discussion examined the prevailing culture of modern medicine, which is oriented to the body, and the disease (typified in the impersonal language of a distanced observer in the case report). There is much in the way doctors are trained (especially in the complex, systematised, and time-constrained clinical environment) that perpetuates their exclusive focus on physical disease. However, the autoethnography demonstrates that the physical and emotional brutality of cancer treatment can be countered by health professional compassion. Compassion, as a concept, has received remarkably little attention in medical research, and more is needed to understand if compassion can be taught (or, at least, not diminished by medical training and practice).

The research offers others an insight into what patients experience beyond their disease; beyond the histology and into the worrying. Acting compassionately, in simple ways where one human reaches out to connect with the humanity in another to relieve their distress, is practising the art of medicine.