Taking dying patient home with children - what are your thoughts?

[tokebi]

I was reading a SW's note on a patient recently and read about the family's refusal to take patient home because they have little children. I am encountering more and more people these days who want to shield their children from seeing death/dying.

I am a huge proponent of providing hospice care at home, allowing people to die in their own bed, surrounded by their family. Not in a hospital. Not in a nursing facility. And so, I am saddened by this situation.

When I was little, I remember my aunts taking care of my dying grandmother at home. I remember her vacant stare, a tube from her nose, the deep, gasping breaths. It was strange to me, but I was not scared or anything. I feel like we underestimate children a lot. I think kids can take it. Even learn an important lesson about life that way.

What do you think? Would you feel comfortable letting your children see a family member dying, or do you think dying person should be kept away from children?

[KelRN215, BSN, RN]

Pedi nurse here. I have not encountered the situation of an adult dying and the family deciding to keep him in the hospital because there are children at home because, well, I am a pedi nurse. I HAVE experienced a child dying and the parents deciding that they didn't want to bring him/her home to die because of the other children in the home. I have experienced that more than once. I have also worked with bereaved families for years and the children- once they are older- do not speak of being haunted by being present for their siblings' deaths. Actually, I have not heard one child (teenagers by this point) say "I wish I wasn't there when my brother or sister died." When they speak of things they wish they had done differently, the overwhelming theme is that they wish their parents had been more honest with them. The ones who weren't present for their siblings death will tell stories of waking up, going to school, coming home and then having Grandma or Auntie tell them that their little brother died while they were at school. I remember one sibling telling a story of what happened the day her brother died. From her perspective, her parents knew he was going to die that day and they therefore sent her off to some relative's or friend's house. She came home and her brother was dead. And THAT makes them angry. One of my favorite patients died a couple years ago- she died within 9 months of diagnosis. Her siblings were young-ish - 6 and 7 or 7 and 8- but not so young that they had no concept of death and they would most certainly have memories of their sister. The child ended up dying in the hospital but, when she was home, they had moved her bedroom into the basement so the siblings would not see her. The siblings were not permitted to attend the services when she died. I foresee more issues from this in the future than there would have been if they had been there when she died or when she was laid to rest.

That said, in the OP's situation, it may be (as others have said) that the family cannot handle bringing their relative home and the easiest answer for them to come up with as to why was the children. If they can't do it, that's fine. If they really are trying to shield the children, it would be beneficial for a Child Life Specialist, Social Worker, Nurse, Doctor, whomever to speak to the children. Children often know more than you think they do and they are more than willing to talk if given the opportunity. One of the families I worked with who didn't want to bring their son home to die because of their daughter didn't specifically tell her that her brother was dying for some time. When the father actually went home and discussed it with her, he said she asked when her brother was coming home. He told her that they weren't sure and that it was possible that he might not come home and would go to Heaven. At that point, the child's response was "I know that." She was 9 or 10 and understood all along that her brother- who had been sick for many, many years- might not be coming home this time. She was a smart kid. She understood that this hospitalization was different than all the times he'd been in the hospital before. Both parents were gone every night. It had been a long time. And she figured it out. She didn't tell her parents she knew because she was trying to protect them.

[cinlou, BSN, MSN, RN]

I think addressing it up front and making those decisions for life and death are important so that the decision is not being made at the last minute, whatever it may be. My Mother-in-Law said she would rather go in to a nursing home than live with us because she would be arguing with her son. But now her oldest is living with her so you never know if she will change her mind, we will support whatever decision she makes.