BACKGROUND: 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. METHODS: 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. FINDINGS: 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%. INTERPRETATION: 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.
BACKGROUND: 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. METHODS: 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. FINDINGS: 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%. INTERPRETATION: 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.
Authors: J A F Koekkoek; L Dirven; E M Sizoo; H R W Pasman; J J Heimans; T J Postma; L Deliens; R Grant; S McNamara; G Stockhammer; E Medicus; M J B Taphoorn; J C Reijneveld Journal: J Neurooncol Date: 2014-08-24 Impact factor: 4.130
Authors: Eefje M Sizoo; Linda Dirven; Jaap C Reijneveld; Tjeerd J Postma; Jan J Heimans; Luc Deliens; H Roeline W Pasman; Martin J B Taphoorn Journal: J Neurooncol Date: 2013-10-29 Impact factor: 4.130
Authors: Akanksha Sharma; Briant Fruth; Celina Barrera; Hannah N Farfour; Maciej M Mrugala; Mark K Edwin; Jeff A Sloan; Alyx B Porter Journal: J Neurooncol Date: 2021-01-23 Impact factor: 4.130
Authors: Rifaquat Rahman; Paul J Catalano; David A Reardon; Andrew D Norden; Patrick Y Wen; Eudocia Q Lee; Lakshmi Nayak; Rameen Beroukhim; Ian F Dunn; Alexandra J Golby; Mark D Johnson; E Antonio Chiocca; Elizabeth B Claus; Brian M Alexander; Nils D Arvold Journal: J Neurooncol Date: 2015-06-02 Impact factor: 4.130