Living with advanced cancer and an uncertain disease trajectory: an emerging patient population in palliative care?
- Elizabeth A Lobb1,2,3,
- Judith Lacey1,
- John Kearsley4,
- Winston Liauw4,5,
- Lesley White1 and
- Annmarie Hosie1
- 1Department of Palliative Care, Calvary Health Care Sydney, Kogarah, New South Wales, Australia
- 2Cunningham Centre for Palliative Care, Darlinghurst, New South Wales, Australia
- 3School of Medicine, University of Notre Dame Sydney, Darlinghurst, New South Wales, Australia
- 4St. George Cancer Care Centre, St. George Hospital, Kogarah, New South Wales, Australia
- 5Faculty of Medicine, University of New South Wales, Kensington, New South Wales, Australia
- Correspondence to Professor Elizabeth A Lobb, Department of Palliative Care, Calvary Health Care Sydney, Kogarah, NSW 2217, Australia;
Objective This study explored how patients diagnosed with advanced cancer cope with an uncertain disease trajectory.
Subjects 27 patients with advanced cancer and with a prognosis of 12 months or more were recruited from the medical/radiation oncology and palliative care service at three metropolitan hospitals.
Methods A semistructured face-to-face interview was conducted. Interviews were audio-taped and transcribed verbatim. Data analysis was based on Grounded Theory using the constant comparison method.
Results Results indicate that patients cope by avoidance, remaining positive, maintaining as normal a life as possible, minimising the impact of the disease on their daily lives, comparing themselves favourably with others in a similar situation and focusing on the outcome of treatment to control disease progression. Most did not wish to discuss prognosis or have detailed information on disease progression.
Conclusions Participants in this study represent an emerging cancer patient population who are receiving palliative therapies. While they have incurable cancer, they self-report as clinically well, they describe a good quality of life and the trajectory of their disease, while unpredictable, may extend over many months to years. Our study suggests that a flexible model of care is needed to support the needs of people who may still be receiving some form of chemotherapy and/or radiotherapy, and remain well. This model may need to take more of an intermittent approach, that is, as required for specific symptom management, rather than patients being linked continuously to a palliative care service for long periods of time.
- Received 2 October 2012.
- Revision received 4 December 2012.
- Accepted 16 December 2012.
- Published Online First 28 January 2013
- Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions