The experiences of cancer patients

To assess the needs of cancer patients for information about their condition and to understand the psychological impact of their illness.

The discussion of prognosis and treatment options in the palliative setting is an important and difficult part of oncology practice. To evaluate this, we examined the experiences of cancer patients of the physical and psychological impact of their disease on their life, and their opinions on the communication of end-of-life decisions and treatment options.

A patient questionnaire was designed that encompassed communication regarding treatment and prognosis, quality-of-life attitudes subsequent to cancer diagnosis, end-of-life care and cancer drug funding. One hundred and twenty-five patients with a diagnosis of cancer were asked to participate and 96 questionnaires were completed and available for analysis. The questionnaire consisted of 63 questions and was completed in both an inpatient and outpatient setting.

This survey brought to light a number of controversial issues in cancer service provision, highlighting the emotional and psychological changes brought about by a cancer diagnosis. Major concerns of our patients include fear of death and pain, changes in interpersonal relationships and financial constraints. Only 66% of the patients wanted to be given a prognosis by their clinicians and just 70% of the patients recalled being given a detailed prognosis. 11% of the patients were not prepared to undergo palliative treatment. In all, 7% were not prepared to accept treatment for 1 year and 2% for 5 years of life in exchange for the potential side effects of cytotoxic chemotherapy. 12% of the patients would not want to be in possession of the information that they were in the terminal phase of the illness with a short time to live and 16% would not want this discussed with their next of kin.

This study informs medical professionals about the importance of tailoring information to the needs of the individual patient, and we feel it provides insights into the successes and failures of our communication with cancer patients. It is important that difficult discussions are personalized to the individual patients' wishes. These can vary dramatically both in the area of disclosure of bad news in prognosis and in end-of-life decision making. This study provides compelling evidence for good advanced care planning at an early stage in the management of patients with terminal cancers.