Table 4. Theme1 Views on balancing the benefits and burdens of TIV for ALS patients.

Category	Subcategory	Quote
1-a Therapeutic applicability of TIV for ALS patients	TIV for ALS as a standard treatment	TIV does not stop disease progression, so I would not explain it as a standard treatment. (JP6)
		I’ve got much less experience of people with tracheostomy ventilation in MND and you know what strikes me is that of course the ventilation doesn’t stop the other things happening which can end the person’s life. (UK4)
	Survival expectation for ALS patients requiring TIV	I think that these people very, very clear, they have ALS, are not going to live for 7 to 10 years. They’re going to live for six months.(UKI)
		I say that with a ventilator we can extend that to a decade or more depending on how things are going with your health and other comorbid conditions. (US3)
	Disease stage assessments for ALS patients requiring TIV	I think ALS patients requiring TIV are not at the end stage of life. (JP2) I would describe it as this young man is now dying of ventilatory failure caused by amyotrophic lateral sclerosis and up until now the ventilation has succeeded in delaying that but that’s what’s happening. (UK4)
	QOL of ALS patients with TIV	TIV will help the respiratory function for the patients, but they will be suffering from other symptom. (JP1)
	Family burden for ALS patients with TIV	I am worried about the family, because they will be exhausted to care the patient with TIV. Sometimes, I had the patient family relationship broken. (JP5) And so when families provide that care themselves, it’s very high intensity hybrid and their whole lives become about providing this ventilator care and when they hire someone else to do it, it becomes really financially burdensome. (US3)
1-b TIV as a part of scarce medical resources	Availability of TIV for ALS Restriction of TIV use due to lack of medical resources	Japanese patients have feasible options for TIV (JP4) One of the major ethical issues we have is when sometimes people want to have things like tracheostomy and ventilation, but we don’t have the resources. (UK3) I would say that there are some patients who can go home in a patient like this. But they are the patients that are more affluent who have the means to pay for home nursing at home. (US2)
	The responsibility for the society to decide how to allocate medical resources	This is a very complex and troublesome project. It’s not simply, “Let’s find some treatments and cure ALS,” which is the way patients think about it and the way that funding bodies think about it and the way society thinks about it. The reality is we are entering on a journey where we will make more people disabled for longer. That may sound negative, but that’s the reality. This is, it’s not my opinion. It is a fact. We have to deal with that fact. (UK1)