Table 6.
Sub-theme no. 4: artificial nutrition and hydration ≠ patient’s best interest—brief summary and selected quotes from the interviews.
| Home hospice units (HHUs) | Home care units (HCUs) | |
|---|---|---|
| Professional staff members (PSMs) | Briefly: significant differences were found between two groups: no HHU PSMs considered ANH to be in the patient’s best interest. However, around 40% thought it was the family caregivers’ decision. In the HCU, around half of the PSMs considered ANH to be in the patient’s best interest and only 30% thought it was the family caregivers’ decision. | |
| What strengthened us with the “do no feed” attitude was the
American Geriatric Association’s Guidelines that had state
that it is ok to not feed at this stage, and even if the
patient eats only three teaspoons of ice cream a day, that’s
great! Because what matters is the comforting element of
food, the interpersonal touch and not calorie intake. (Male,
physician) I told the son, I will insert the NGT in you, and if you think it’s ok, then we will do it to your father. (Female, nurse) Families, especially orthodox, that will do everything for feeding, they have NGTs or PEG, they will use hand restraints…but if I want to make a change, it is a long process, and if I do it after the first few meetings, they will throw me out of their house. (Female, nurse) |
It’s hard for me. I don’t think people should starve. We
live in a developed country. On one hand, I can understand
them (the families). It means prolonging suffering. It’s a
lot of internal ups and downs. Would I do it to my
grandfather? Probably not. But as a professional, as a
nurse, I do recommend artificial feeding. I have a lot of
conflicts. I’m aware of that and it is not easy. (Female,
nurse) If someone refuses to eat, it depends on the case. Usually we will give guidance and support, because maybe it may be temporary. But if there is consistent refusal, there is no other choice but to insert an NGT for feeding. (Male, nurse) |
|
| Family caregivers | Briefly: two groups had similarities regarding ANH for their loved one. In both groups of family caregivers’, around one-third considered ANH to be in patient’s best interest and around one-third did not. The rest never considered or discussed this matter. | |
| We sat down with the social worker who was very helpful, and
my brother agreed to let go. We stood there hugging each
other when they took the tube out…It was six months ago…she
is still with us. (Jewish, secular, daughter) She must eat. She has all these pressure sores. But everything is fine now, I don’t know about later, I don’t want to think about it. It scares me, why would she stop eating? No way. (Muslim, religious, daughter) |
I am not going to connect him to any feeding tube, PEG or
NG. I have consulted about this with some doctors who said
it leads to infections, to a couple of months of life
extending, and eventually they die anyway, without any
quality of life. So, for me, as a complete heretic (agnostic
to the Jewish religion), I do not see any point in living
without any quality of life. He doesn’t understand where he
is, he doesn’t enjoy anything. (Jewish, secular,
daughter) I don’t want to force her to eat, but the question needs to be asked—is it possible? I don’t want to extend her life, I know that for sure, but I don’t know anything. You ask about swallowing problems, but I don’t know anything about that (crying). (Jewish, secular, daughter) |
|
ANH: artificial nutrition and hydration; NGT: nasogastric tube; PEG: percutaneous endoscopic gastrostomy.