The Problems with ???Heroic Measures???

The full spectrum of ethical issues in the care of patients with ALS: a systematic qualitative review

“…This DSEI does not J Neurol say how to support relatives but aims to draw attention to the fact that relatives in many situations may need support. Examples of these situations, ranging from psychological problems and emotional support to questions regarding self-determination of the patient and surrogate decision making, can be found in the underlying literature [12][13][14]. While in many cases, there was a consensus in the literature about how to deal with specific ethical issues; for some DSEIs, we found inconsistent recommendations or references to controversies.…”

“…Keeping in mind the high prevalence and socio-economic impact of dementia compared with ALS, we expected such a difference regarding the number of publications. Second, the thematic focus of the publications we retrieved was notable: of the 41 references we included in our spectrum of ethical issues, only 5 publications dealt with a broad range of ethical issues in ALS [2,6,7,17,18] while 13 publications concentrated on end-of-life decision making and palliative care [10,12,14,15,[19][20][21][22][23][24][25][26][27]. Of these 13 publications, some explicitly dealt with end-of-life decision making or palliative care in ALS [15,21,24], while others used ALS only as an example (many times in form of a case report) to highlight general aspects of these issues [10,19,22].…”