Poster Presentation COSA-IPOS Joint Scientific Meeting 2012

Ovarian cancer patients’ expectations of palliative chemotherapy: the fine line between hope and misunderstanding (#475)

Rebecca L Mercieca-Bebber 1 2 , Phyllis N Butow 1 2 3 , Michael Friedlander 4 5 6 , Madeleine T King 1 2
  1. University of Sydney, The University of Sydney, NSW, Australia
  2. Psycho-oncology Co-operative Research Group, University of Sydney, NSW, Australia
  3. Centre for Medical Psychology and Evidence-Based Decision-Making, University of Sydney, NSW, Australia
  4. University of New South Wales, Kensington, NSW, Australia
  5. Prince of Wales Hospital, Randwick, NSW, Australia
  6. Royal Hospital for Women, Randwick, NSW, Australia

This qualitative study assessed expected benefit from palliative chemotherapy in women with resistant/refractory ovarian cancer, as part of Stage 1 of the Gynaecologic Cancer Inter-group Symptom Benefit Study.

Eligible patients were symptomatic at baseline and had completed ≥3 cycles of chemotherapy. We sampled purposively to obtain a balanced mix of patients whose symptoms improved, persisted or worsened. Data saturation was achieved at twenty telephone interviews. Three researchers coded transcribed interviews, and thematic analysis was conducted using NVivo.

Three major themes emerged. The first was ‘hope’ that the chemotherapy would extend survival. Hope motivated patients to begin and remain on chemotherapy, despite knowing that their disease was incurable. Hope made treatment easier to bear and could only be maintained by continued treatment. Any biological or symptomatic improvement inflated this hope.

The second major theme, ‘perseverance and stoicism’, included three sub-themes: 1) prioritising life and independence; 2) avoidance; and 3) blind trust. Patients were prepared to endure severe treatment side-effects as long as their independence and physical QOL were maintained. Patients’ stoicism enabled them to avoid acknowledging their suffering or mortality. Patients also had blind trust that chemotherapy would extend their life, leading them to persevere with chemotherapy despite its side-effects.

‘Tipping point’, the third major theme, is the point at which the side-effects of chemotherapy will inevitably become unbearable for the patient, leading to the decision to end treatment. Patients admitted they would rather pass away than become a burden to their families.

Patients expected chemotherapy would prolong their survival rather than improve their symptoms and persisted with chemotherapy despite side-effects. Patients had difficulty accepting the palliative intent of their treatment despite having been informed of this by their clinicians. The line between hope and misunderstanding can be hard to draw for both patients and clinicians.