Decision-making in the end-of-life phase of high-grade glioma patients
Cette étude de cohorte incluant 155 participants analyse les modalités de la prise de décision relative aux soins de fin de vie de patients atteints de gliome de haut grade
During the disease course of high-grade glioma (HGG) patients, the goal of therapy eventually shifts from primarily life-prolongation to primarily sustaining the quality of life as good as possible. End-of-life care is aimed at prolongation of life with good quality, but inevitably also may require medical decisions for prevention and relief of suffering with a potential life shortening effect. Few data are available on this end-of-life decision (ELD) making process in HGG patients, with decreased consciousness, confusion or cognitive deficits preventing them to participate. In this study the ELD-making process in HGG patients is described. Physicians and relatives of a cohort of 155 deceased HGG patients were identified to fill in a questionnaire regarding the end-of-life conditions (patients’ ELD preferences, patients’ competence) and ELD-making (forgoing treatment and the administration of drugs with a potential life-shortening effect) for their patient or relative. Data were analysed with descriptive statistics. Of 101 patients, physicians completed surveys including questions about ELDs (62% response rate). More than half of the patients relatively early became incompetent to make decisions due to delirium, cognitive deficits and/or decreasing consciousness. In 40% of patients the physician did not discuss ELD preferences with his/her patient. At least one ELD was made in 72% of patients, most often this comprised the withdrawal of dexamethasone. Palliative sedation was performed in 30% of patients and physician assisted death in 7%. ELDs are common practises amongst HGG patients, although their preferences towards ELDs are frequently unknown to the physician. Because the majority of patients become incompetent towards death, participation in ELD-making is only possible with advanced care planning. Hence, timely discussion of ELD preferences is encouraged.