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

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.

Figure 1

Interview Guide.

Figure 2

Summary of Attitudes. Graph illustrating the attitudes of patients and caregivers towards the seven identified themes. Attitudes were deemed to be in favour if they received a positive score (+2 or +1) according to our coding framework. Attitudes opposed were those that received negative scores (-2 or -1). A neutral score (0) was obtained if the participant was undecided, or if a question was not asked. Legend: Uniqueness – Brain Cancer is Unique; Strength – personal strength or lessons are derived from the illness experiences; Quality of Life – quality of life is more important than prolongation of life; Euthanasia – general attitude towards euthanasia; Religion – spirituality and/or religion play a role in coping with the illness; Mental Competence – a premium is placed on cognition, memory and mental competence over motor functioning; Talking – it is helpful to talk about the illness experience, and such studies are important.

Figure 3

Recommendations for addressing illness experience issues with patients.