Background
Methods
Design
Participants
Relatives interviewed | Professional caregivers interviewed | |
---|---|---|
Case 1: female, died from dementia, moderate intellectual disability | 1 mentor | 1 nurse |
(a friend) | 1 ID physician | |
1 psychologist | ||
Case 2: female, died from metabolic disease, severe/profound intellectual disability | 1 mother | 2 social workers1 |
1 nurse | ||
1 GP | ||
Case 3: female, died from kidney failure and heart failure, mild intellectual disability | 1 sister | 1 social worker |
1 brother-in-law | 1 GP | |
Case 4: male, died from cancer, mild intellectual disability | 1 sister | 1 social worker |
1 brother-in-law | 1 nurse specialized in palliative care | |
1 GP | ||
Case 5: female, died from cancer, mild intellectual disability | 1 social worker | |
1 nurse | ||
Case 6: male, died from cancer, severe/profound intellectual disability | 1 sister | 1 social worker |
1 ID physician | ||
Case 7: male, died from metabolic disease, severe/profound intellectual disability | 1 mother | 1 social worker |
1 nurse | ||
1 ID physician | ||
Case 8: male, died from cancer, mild/moderate intellectual disability | 1 sister | 2 social workers |
1 ID physician | ||
Case 9: male, died from cancer, mild intellectual disability | 2 sisters | 1 social worker |
1 hospice coordinator | ||
Case 10: female, died from dementia, moderate intellectual disability | 1 brother | 1 nurse |
1 ID physician | ||
Case 11: male, died from frailty in old age, severe/profound intellectual disability | 1 brother | 1 social worker |
1 end-of-life care consultant2 | ||
Case 12 female, died from cancer, moderate intellectual disability | 1 sister | 2 social workers |
1 ID physician | ||
Total | 16 | 29 |
Data collection
Opening question | What made the strongest impression on the interviewee during the period of end-of-life care? |
---|---|
Topic 1 | Marking the start of palliative phase, communication about the diagnosis |
Topic 2 | Primary care process (e.g. pain, other physical symptoms, physical care, psychosocial well-being and spiritual well-being) |
Topic 3 | Decisions at the end of life |
Topic 4 | Communication with the person with ID |
Topic 5 | Autonomy of the person with ID |
Topic 6 | Transitions (e.g. changes in place of care or caregivers) |
Topic 7 | Communication and cooperation with relatives |
Topic 8 | Care for relatives (e.g. dealing with loss) |
Topic 9 | Fellow residents |
Topic 10 | The funeral |
Topic 11 | Aftercare |
Topic 12 | Care for carers (e.g. dealing with loss) |
Analysis
Ethical consideration
Results
Josh was a man aged 58, with moderate intellectual disability (Down syndrome). He died from dementia. Josh lived in a group home in the community. |
Eleanor was a frail woman aged 74, with Parkinson’s disease and heart failure. Eleanor was in a wheelchair and had a severe intellectual disability. Eleanor lived in a group home in the community. She died in a hospital. |
Joe was a man aged 40, with a severe intellectual disability and lung cancer. Joe lived in a small-scale living facility on the residential premises of an ID care service. |
From activating towards comfort care and taking over tasks
Josh’s Nurse: ‘There are no ‘musts’ anymore. It's more about letting go, letting Josh have a fine last week. Let him snuggle in bed. He doesn’t have to sit up if he doesn’t have the power to do so. But it was very difficult to let it all go. <> I often wondered: when am I going to take it all over from him? We have learned to encourage clients in all their daily activities and even encourage them to do more activities. Now you have to let go. You should ask yourself: who do I keep offering the activities for? <> We are not doing him a favor. Josh will never be the same person. <> This awareness came slowly, but it was very hard.’
Joe’s sister: ‘Joe always liked to go outside. He had a custom-made bike and we often went out together. He could also really shake his head and say: “I don’t want to go out”. But I thought: he should go out, it’s good for his health, and he will see some different things.<> Then I heard of a woman who also had cancer and who complained that her friends would always take her out, but she had to recover for a week from these outings, and she actually did it more for them than for herself. I thought: why do I still take Joe out? Only to tell myself he is doing fine? Then I decided: if he doesn’t want to go, we won’t go. We don’t have to keep him in shape, he’s going to die. I have to look at his abilities and should not assume that shaking his head is just a gesture, it really means no.’
Interweaving of emotional and professional involvement becomes a struggle
Eleanor is in the hospital and she is expected to die soon. Her social worker and brother are visiting her as often as they can. The social worker is about to go on holiday. She is stressed about this: ‘I didn’t want Eleanor to be alone in the hospital. I found it hard to go home. <> Eleanor’s brother told me several times I could go home. Then I decided: I can only stay this long tonight, then I have to go home, I am going on holiday the next day. <> There are boundaries, I could not have stayed all night. I told myself: I need to transfer my care for Eleanor to others now. But that was very hard. I couldn’t get that act together. I was so deeply involved in her care. It was hard to decide to leave. <> So I wrote a card for Eleanor, for in her coffin and for her brother to wish him strength. And then I went home, to pack for my holiday. But I did not feel like holiday at all’.
‘We always had a special bond. I was really fond of Joe. He was really one of my special clients. <> (in tears) In the team, we decided to care for him ourselves. He wanted to be with us. It felt like family. Caring for him at the end of his life was hard, but rewarding. <> I tried to keep in mind that he was my client, to help me cope. But I didn’t let him notice that, I was very involved with him. I didn’t want him to be in any distress.
Symptom relief: stronger reliance on the joint interpretation of signals
Joe’s ID physician: ‘It took a while before we had the idea that Joe was indicating pain. <> The idea was that Joe would not have to suffer in any case. <> My role as a physician was mainly on demand. It’s the care staff who know him best, they pick up signals such as pain. Then they call me. <> But the identification of pain is largely done by the care staff and the family. I think in Joe’s case it was his sister who first said to me he’s in pain now. And over time everyone agreed that he was in pain. <> You could tell that Joe had pain by his moaning and grabbing. He used to clutch his chest or neck. And make groaning noises. And he would wince. He was also very affectionate towards his care staff and to his mother or anyone who was familiar for him at that time. Whether that expressed real pain I don’t know but I felt he was deteriorating. He sought more proximity and couldn’t be left alone.’
Magnified dependency and responsibility in medical decisions
Josh’s physician and mentor are discussing whether they should place a tube to facilitate Josh’s feeding. Josh would need to go to the hospital to have the tube placed. Josh’s mentor: ‘I said I don’t want him to go to the hospital to get the tube. If Josh is in the hospital he gets very scared by all those white coats, you wouldn’t make him happy by doing that. <> So the doctor told me they may be able to do it in the ID care center. But then again, the tube would only prolong his life a little bit. Would that be right? I wanted to know, am I doing him harm if he doesn’t get the tube? Will he starve to death and feel awful? The doctor said that that was not going to happen, he gave me the confirmation that they would relieve his suffering. That was what I needed to hear. I wanted to be able to look at myself in the mirror and tell myself that I did not do anything very burdensome to him at the end of his life.’
Growing awareness of having two ‘families’
Joe’s sister: ’I drove back from my holiday because I had received a call that Joe was rapidly becoming weaker <>. I thought, gosh, if he dies, then there will only be six of us at his funeral. Well, we all love him, not a lot of people need to be there. <> And while driving I thought: But actually his family is much bigger than our family. Joe has two families. Our family (the relatives) sees him as a man with an intellectual disability, but at his home at the ID care service he has another family who see him as Joe, as a person with a sense of humor and jokes. They (the care staff) talk in a very different way to him than we did. That was good to realize.<> After Joe died, it felt like we (the relatives and care staff) were really one family, all care was finished, and we were there for each other.’