Information giving and decision-making in patients with advanced cancer: A systematic review

Abstract

Patients with advanced, non-curable cancer face difficult decisions on further treatment, where a small increase in survival time must be balanced against the toxicity of the treatment. If patients want to be involved in these decisions, in keeping with current notions of autonomy and empowerment, they also require to be adequately informed both on the treatments proposed and on their own disease status and prognosis.

A systematic review was performed on decision-making and information provision in patients with advanced cancer. Studies of interventions to improve information giving and encourage participation in decision-making were reviewed, including both randomised controlled trials and uncontrolled studies. Almost all patients expressed a desire for full information, but only about two-thirds wished to participate actively in decision-making. Higher educational level, younger age and female sex were predictive of a desire to participate in decision-making. Active decision-making was more common in patients with certain cancers (e.g. breast) than others (e.g. prostate). A number of simple interventions including question prompt sheets, audio-taping of consultations and patient decision aids have been shown to facilitate such involvement.

Introduction

The past 40 years have witnessed a change from seeing the patient as a passive recipient of health-care to a consumer who demands autonomy. It is expected that patients will at least give true informed consent to their treatment, if not actually making such treatment decisions themselves.

Theoretical benefits of involving patients in health care decisions include better compliance with treatment and increased satisfaction from the encounter, in both patient and health care professional. Possible disadvantages include the extra time and therefore cost involved, inducing patient anxiety and a sense of regret if an adverse outcome ensues as a result of a patient driven decision.

The process of information sharing and decision-making has been investigated in a number of health-care situations, including cancer. Selection of initial treatment, particularly in breast and prostate cancer, is often used as an example. There has been far less study of the harder decisions to be made when the cancer has progressed beyond cure, and becomes a disease relentlessly progressing to death, sometimes over years. Further treatment may prolong life or relieve symptoms, but will not eradicate the disease. A trade off must be made between possible benefits and likely side effects. Patients with late-stage cancer are obviously not easy to study, not least because of their physical frailty and the limited opportunity for follow-up. Their capacity to participate in decision-making may be limited by frailty and cognitive clouding. To what extent are these patients involved in treatment decisions, and do they want to be more involved? Are they sufficiently well informed to participate in decision-making? What measures have been tried to facilitate this process? How can these be further tested and developed?