Table 1 Treatment uncertainty

Treatment uncertainty refers to recognising whether someone was actively dying, to decision-making about treatments, referrals to hospital, and how the goals of care were informed by residents’, staff, family’ different definitions of quality of life.

Care home manager talking about the difficulties of knowing if a resident is approaching the end of life:

“I don’t think you could say there is a usual pattern (…) Eating and drinking] can be the start of something…it can be, that’s what I mean. It doesn’t mean to say that that’s going to be Tender Loving Care it could just mean that they’re a bit unwell at that particular time” (EVIDEM EoL).

Treatment uncertainty where GP does not know at what point he should be taking lead in decision making:

“In an ideal world it would be a GP [deciding that an older person with dementia requires EOL care]. Everybody making that decision ….. because it’s undefined isn’t it? An undefined period of death… (EVIDEM EoL).

This resident questioned the value of advance care planning as she saw that it was impossible to know how and when she would die:

“I really don’t see that there is an obligation to foresee all the circumstances that might happen to a person, that might make it very difficult when you come to die, that everything will be ready but it isn’t now and it never will be, whatever you supply” (EPOCH).

Comment by care home staff member referring to treatment uncertainty after completing EoL training:

“…when residents are getting better we always used to think ‘that’s it, they are getting better’… but it’s not. And it must be an emotional roller-coaster for a relative to hear that their parent has gotten worse, then better, then worse….”(TTT study).