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Table 2 Selected illustrated quotations by participant number.

From: “A good death but there was all this tension around”- perspectives of residential managers on the experience of delivering end of life care for people living with dementia

Themes and subthemes Illustrative quotations
Laying the ground work: establishing what families understand about dementia
Appraising family insight to tailor supportive conversations “Dementia is a terminal illness, but lots of people out there don’t know that. If people understood better, I think there would be a roll-on effect … and the ability to talk about it would become easier because people know that it’s coming.” (56, interview)
“Often the person [family] will say I don’t want to talk about that now, I will talk to the doctor in the hospital about that.” (14, focus group 2).
Helping families make decisions amongst uncertainty “Sometimes the family does not have any idea about what palliative care is, we have to educate them from the beginning” (9, focus group 1)
“I don’t think we have a consistent approach to advance care planning. We don’t even have a form that’s a consensus across the company.” (14, focus group 2)
Playing the peacemaker in the face of unrealistic family demands and expectations
Families who want to fight and fix “The daughter wants full active treatment, and wants them force fed, and wants full CPR [cardiopulmonary resuscitation] on a 90-year-old man who weighs 48 kg, and is not really aware of his surroundings because he’s got advanced dementia. That’s a huge ethical dilemma for me because I don’t think we should be intervening” (6, focus group 1)
“They [a family] think if their loved one is not eating or drinking towards the end of life that we’re starving them to death. We have to explain to them that at this stage of life the person doesn’t actually feel like anything to eat or drink.” (10, interview)
Walking the tightrope between appeasing families and prioritising dignified care “They’re unconscious, in a coma, and near death. Then you’ll have a friend or a family member walk in, who hasn’t been there throughout that journey, and say, oh you’re giving them morphine, that’s why they’re like that” (4, focus group 1).
“Everything went completely pear-shaped. The family were sure that because we’d given the most miniscule of comfort medications to this lady, who really needed them, they felt we should put euthanasia on the death certificate. That was heart breaking - we spent hours talking to them [the family] but we still failed. There was this balance between distressing them and distressing her” (14, focus group 2).
Chipping away at denial and cultivating a path towards acceptance of death
Guiding families towards the inevitable is an unpredictable and daunting process “It’s about relationship-building and making the family comfortable enough to be able to release their loved ones into our care, to safely send them on their journey” (17, focus group 2).
“The sheer unknown can be daunting at times when you’re not quite sure how family or a GP or a resident or a staff member are going to respond [to end of life discussions]” (18, focus group 2).
Promoting confidence in comfort care as an alternative to futile medical intervention “I talk about all the things that we do to stay out of hospital and I leave it at that. Sometimes you’ll get pushback [from families] and that’s something you need to slowly chip away “(18, focus group 2).
“So all those complaints, those emails, the meetings, all that stuff is irrelevant. To see him [the son] acknowledge that this is her home, and that we need to care for her here -- was really quite a nice experience” (6, focus group 1).
Recruiting GPs as allies
The relief that comes with experienced and confident general practitioners “Then you get an after-hours doctor that doesn’t turn up, or doesn’t want to come, or refuses to assist you because they don’t want to get involved, because it’s end of life” (6, focus group 1).
“We’ve got some amazing GPs, and half your battle is working with the GPs” (16, focus group 2).
The unique position of general practitioners to effect end of life care “They (GPs) want to help people, they want to send people for tests, they want to make people better. Palliative care is not a concept that sits comfortably for them” (6, focus group 1).
“I had a GP who wasn’t sure what to do, so I gave him the palliative book. He read that, was happy, took a copy home for himself and prescribed accordingly” (18, focus group 2).
Supporting and strengthening the front line
Staff can be uncomfortable with death “It depends on your staff and their education, how comfortable they are at recognising and delivering end of life care, as well as communicating it. Because if you’re not comfortable giving it, then you’re not comfortable communicating it to families and friends “(16, focus group 2).
Front line staff are out of their depth because talking to families is precarious “Care staff indicate they want to do a course on difficult conversations. I’m still yet to understand what that means, but essentially what they’re saying is they’re not comfortable and they believe that there’s a course or some sort of definitive way to manage all these scenarios.” (18, focus group 2).
“They [care staff] don’t seem to have the skill to be malleable with their communication style ... they don’t pick up cues from the families” (10, interview).
Managing death is hard-to-teach; experience and exposure is irreplaceable “Theory is one thing, but actually putting it into clinical practice and being exposed to it teaches you ten times what the textbook can” (10, interview).
“The more times you experience end of life care adds to your abilities and each death is so different, you take something away from each person” (5, interview).
Dedication to optimal care is relentless but rewarding
The diversity of residents, families, nurses, care staff and general practitioners demands continuous personalisation of care and communication “It’s about knowing the individual resident and tailoring care to them, knowing your staff individually, and their strengths and weaknesses, and competency with palliative care. Knowing the families individually and where they’re up to in the journey. There’s a very difficult intersection between all of these things, that we just try to manage.” (3, focus group 1)
Dignity, peace and gratitude make end of life care fulfilling “Supporting someone to die well is just the most amazing experience. It’s scary the first time, but I think it’s the most amazing experience because it’s the ultimate in caring and supporting.” (55, interview)
“I think most of the time the vast majority of people that we support through palliative care do end up having good deaths and it’s not a traumatic experience for anyone.” (56, interview)