Email updates

Keep up to date with the latest news and content from BMC Palliative Care and BioMed Central.

Open Access Highly Accessed Research article

The attitudes of brain cancer patients and their caregivers towards death and dying: a qualitative study

Nir Lipsman1, Abby Skanda1, Jonathan Kimmelman2 and Mark Bernstein1*

Author Affiliations

1 Division of Neurosurgery, Toronto Western Hospital, 399 Bathurst Street, 4W451, Toronto, Ontario, M5T 2S8, Canada

2 Medical Bioethics Unit, McGill University, 3647 Peel Street, Montreal, Quebec, H3A 1X1, Canada

For all author emails, please log on.

BMC Palliative Care 2007, 6:7  doi:10.1186/1472-684X-6-7

Published: 8 November 2007

Abstract

Background

Much money and energy has been spent on the study of the molecular biology of malignant brain tumours. However, little attention has been paid to the wishes of patients afflicted with these incurable tumours, and how this might influence treatment considerations.

Methods

We interviewed 29 individuals – 7 patients dying of a malignant brain tumor and 22 loved ones. One-on-one interviews were conducted according to a pre-designed interview guide. A combination of open-ended questions, as well as clinical scenarios was presented to participants in order to understand what is meaningful and valuable to them when determining treatment options and management approaches. The results were analyzed, coded, and interpreted using qualitative analytic techniques in order to arrive at several common overarching themes.

Results

Seven major themes were identified. In general, respondents were united in viewing brain cancer as unique amongst malignancies, due in large part to the premium placed on mental competence and cognitive functioning. Importantly, participants found their experiences, however difficult, led to the discovery of inner strength and resilience. Responses were usually framed within an interpersonal context, and participants were generally grateful for the opportunity to speak about their experiences. Attitudes towards religion, spirituality, and euthanasia were also probed.

Conclusion

Several important themes underlie the experiences of brain cancer patients and their caregivers. It is important to consider these when managing these patients and to respect not only their autonomy but also the complex interpersonal toll that a malignant diagnosis can have.