Table 1

Key characteristics of the 46 patients

Characteristics	Subcategory	Patients (n)
Sex	Male	37
Sex	Female	9
Type of ventilation	TV	4
Type of ventilation	NIV	42
Age group (years)	<30	0
	31–50	9
	51–70	24
	>70	12
	Unknown	1
Duration of ventilation (months)	>12	30
	6–12	7
	1–6	8
	<1	1
Ventilation dependence: how long can the patient manage without assisted ventilation before symptoms occur?	Could not manage at all	19
	A few minutes	19
	Up to an hour	5
	A few hours	3
Communication by patient, in the last days	By speech	26
	By writing/keyboard	7
	By blink	1
	By eye movements	6
	By arm/facial movement	2
	No communication	4
Place of withdrawal of assisted ventilation	Home	20
	Inpatient hospice	22
	Care home	2
	Hospital	2