Table 4.

Sub-theme no.2: Complexity of clarifying patients’ wishes—brief summary and selected quotes from the interviews.

	Home hospice units (HHUs)	Home care units (HCUs)
Professional staff members (PSMs)	Briefly: the majority PSMs, in both HHUs and HCUs, considered the family caregivers’ wishes as equal to that of PWESD. In the HCU, PSMs expressed less effort to clarify patients’ wishes than in the HHU.
	What matters is that our loved one will receive the best care, emphasizing that he chose it for himself. So, they (family caregiver) don’t put the patient’s needs first and they worry about what others will say: in the neighborhood, in the synagogue, in the town, in the extended family…. When you deal with that nonsense instead of with the person in front of you, then it is very disappointing. (Male, physician)	I don’t know what this lady wants because I have known her in the same condition for the last three years, and now she is getting worse, and she was unconscious. Her daughters are not her guardians, they don’t have an advanced written directive, but they say that she (their mother with end-stage dementia) always wanted to stay at home instead of being hospitalized. They have no right to decide not to take her to the hospital…. When the ambulance came, I went into the bathroom, so I wouldn’t yell at them. I told myself to relax, it’s their decision and not mine, but I was still very angry with them. (Female, nurse)
Family caregivers	Briefly: in both HHH and HCU, there was confusion and lack of knowledge, only around 50% of family caregivers considered themselves as representing the wishes of PWESD for end-of-life planning process.
	I don’t know what my mom wants for herself. We never talked about it, but before my dad passed away, the doctor asked my mom whether to give life-saving treatments and my mom (before her illness), who cared for him, said, “He’s 92, he’s sick, let him be”. (Jewish, secular, daughter) We never discussed it, except that she told us she believes in us and that we will know what to do about her. (Jewish, secular, son)	His life is not worth anything, there is no doubt about it…. and my dad didn’t think it was worth anything…I think it would be a great relief for him to die. It’s like he’s dead and not dead…. (Jewish, secular, son) I know my dad wants to live. My dad counted on me to do everything to keep him alive…I know him best. (Jewish, religious, daughter)

PWESD: patient with end-stage dementia.