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?

[Mom2boysRN]

At 16 my grandfather was dying of cancer. He lived in another state, but we were visiting frequently. There was a point when us grandkids were no longer allowed to see him. We were told that he didn't want us to remember him that way, he wanted us to remember him as he was when he was healthy. I hated it and I wanted every moment I could have with my grandpa. I also respect what he wanted. I wondered at that time how awful it was that us kids had to be kept away. I don't think there is a right and wrong, each family deals with the death of a loved one differently. If the adults don't handle death well then the dying person shouldn't be in the home.

I've had this discussion with my hubby. He said he would want to be put into a hospice, I would want to care for him at home. I know how and I would want to be the one to take care of him. I would want him to put me in a hospice. I know he couldn't emotionally handle taking care of me if I was dying.

As caregivers we don't know the full story of the families we are caring for. We need to try our best to be nonjudgmental and do our jobs.

[Here.I.Stand, BSN, RN]

I took my kids to see my Grandpa when we thought he was actively dying (he ended up living another week), and they weren't traumatized. That said, I can't assume that my choices are best for other families. That family is the one who will live with their decision--right, wrong, or indifferent.

[Nurse SMS, MSN, RN]

I think this is too personal a question. It may be this was just the most plausible excuse they felt they could give in hopes of not being harshly judged for not wanting to have the dying person at home. It may be the idea of death in the house itself scares them. A hundred "it maybe"s. The most important thing is to support the family and their decisions. Period.

[Emergent, RN]

I would look back to what people 100, 200 years ago or more did. They had a sick room in the home that was a sacred space. They named the bed where the dying lay 'The Deathbed'. Children were certainly not allowed willy nilly in the sick room or on the deathbed. There was a designated caregiver and there were others who made sure the children were cared for and mainly stayed out of the sickroom. They might be ushered in briefly to see the dying, but they were not expected to fully understand what was going on.

Dying was an event that was not a child-centered event. Ancient people had a better grasp of the place of children in the order of things. They didn't expect a mere child to give up his childish world and fully participate in something of such gravity as dying. The star of the drama is the dying person. The child's participation was usually limited.

I'm sure in the olden times, parents also wanted to shield their children from death and preserve their innocence of such grim realities that can cause such fear. Yet, death was close at hand and more a part of everyday life, rather than tucked away in hospitals and nursing homes, and unrealistically portrayed on TV and in movies.

[uRNmyway, ASN, RN]

I can't really speak for this from seeing it professionally.

I can definitely say how my professional experience has had an effect on my personal memories.

Years ago, my grandparents were hospitalised, at different times of course. Grandmothers for cancer, grandfather for heart disease.

I remember being so hurt that one of my grandmas did not want the grandchildren to visit at the end, saying as others, she did not want us to remember her that way. I was the oldest grandchild, in the sixth grade. As others, all I wanted at the time was to have that extra time with her. I can say now, after having the experience of seeing my other grandmother dying of cancer (I was a nursing student at the time), she was maybe right. When I think of this other grandmother, I do see her as she was at the end. Dying, confused, barely responsive and the smell typical of end stage cancer. I do have a difficult time thinking of her as she was my whole life beforehand. As a nurse, now, I do see more what my grandmother meant. I am happy that I do have the memory of her as she was when she was healthier, more, well, HER! . To think of her as she was at the end, would destroy that memory of who she was, the essence of who my grandmother was.

I don't know. I see what others mean. I really do. But using my personal experiences, as a nurse, and from seeing my relatives dying this way, I can definitely see what your patient meant.

[NotReady4PrimeTime, RN]

My grandfather died just before I turned four. He had lung cancer and was ill at home for some time before his death. I wasn't kept away from him and can remember happily playing along side him in his bed not that long before he died. I wasn't there at the end, so the parts I remember are good, happy memories for me. I don't remember being fearful of being with him and knowing that he was dying, I just remember that it was a special time for me and him together. About 10 years ago my sister gave me a picture frame for Christmas. At first I didn't really look at the photo in it, thinking it was one of those generic black-and-white ones that frames are sold with. When I realized it was a photo of me with my arms wrapped around his neck and his arms wrapped around me, I cried. It was so obvious that I adored him and he adored me right back. I like to think that is what I would be thinking of when counselling families about taking someone home to die.

[T-Bird78]

My uncle was in the CCU for 9 weeks before he finally passed. It was a roller coaster and took a toll on the whole family. When he was gone (only the BiPap and pacemaker were keeping his vitals going) my aunt made the decision to take him off the machines and turn off the pacemaker. We waited for my cousin to drive up from Florida (he's in the military and would be deployed the next week). The entire family was in the room as they turned off the BiPap and his pacemaker. We were all in tears, then my uncle coughed, sat straight up, turned gray and my aunt screamed his name out and grabbed him--and he was gone. My younger cousins (14 and 12) yelled "Oh Grandpa!" I wouldn't want any child to see that again. It haunts my family, even the adults, because it wasn't the peaceful way expected. My FIL died at home under hospice care and I wouldn't let my son see him. He was diagnosed with stage IV mesothelioma and was literally gone 10 days later. I didn't let my son see him (we live in another state so he'd gone downhill in the week since we'd seen him last) because he was so gaunt and sickly-looking that it would really trouble my 12-year-old. Parents know what their child can and can't handle emotionally.

[ceebeejay]

It's a personal matter, to be decided amongst the family. I try not to judge either way. I will never forget the ICU nurses looking at me like I was a child abuser when I brought my children in to say goodbye to the grandpa. My oldest was sad, but not traumatized, my middle child could not handle it so I removed him, and my youngest was 3 and just wanted to give her grandpa a hug. I discussed over several weeks with each according to their needs. That was our choice. But, I will NEVER forget how invasive and judgmental the nurses in that unit were. Keep it to yourself and learn to separate your personal beliefs from those of your patients.

[NicuGal, MSN, RN]

I don't think people should be judged. My father had end stage COPD and Intried to take him into my home. At the time I was working full time, had used half my FMLA, had a just turned 3 year old and was still trying to cope with my mother's death 2 years prior, oh and throw in an alcoholic sibling who was unpredictable. My father was angry and would tell and he held me responsible for taking my mom off the ventilator when all other options were futile. He fires every single caregiver I brought in. I could not do it all, I placed him in a nursing home. I still have a lot of guilt over that. He died 3 months later. Judge me if you will but sometimes you can not do it.

He scared my daughter when he was angry, you can't explain that to a young child. I was tethered, if you will, to the house with not one spare minute for her. It all depends on the situation. Older children should be talked to and part of the process if they are close to that grandparent. They would probably want their own parent close to them, depending on that individual situation. Hospice is a wonderful place and a wonderful alternative.

[imintrouble, BSN, RN]

There are so many variables to answer this question with a simple answer.

Most of those variables have been addressed here. It makes it a little easier to see how different nurses, hold different ideas, about what is correct.

An ICU nurse who witnessed an "ugly" home death as a child, might let that experience influence what advice she gives to a family considering hospice.

An ICU nurse who cherishes the last minutes she spent with a dying grandpa, would use that experience when giving her advice.

It's what we do. Our experiences shape how we think and feel.

My family has been very blessed, in that no deaths occurred when my children were little. I didn't have to make those tough choices.

Back in the 60s, my grandmother died in our home. I remember being terrified after she died. Scared of my house. Scared of that room. Scared that she was going to be a ghost that haunted our second floor.

THAT is what I remember most about the grandmother I loved.

If my parents had died when my children were small, the above would be the experience I'd call upon, to make choices about what they'd be allowed to witness.

[Bbo.W]

It seems unfair to me to make sweeping statements like "I would never......" (fill in the blank). None of us have a crystal ball, and to judge a family for their choices is unprofessional. Part of the art of nursing is to educate families and patients and to support their choices.

[ICU56]

It seems unfair to me to make sweeping statements like "I would never......" (fill in the blank). None of us have a crystal ball, and to judge a family for their choices is unprofessional. Part of the art of nursing is to educate families and patients and to support their choices.

I agree with this. This whole concept makes me think of a story about my wife who is not in medicine at all. She was in a store and witnessed a man have, from what she described, some sort of seizure activity, fall and hit his head. it cause a laceration which, per her description, sounded more superficial than anything. Maybe a few stitches from description. She, however, was horrified and it bothered her for several days even though by her own account the patient was fairly fine by the time EMS cleaned and bandaged his lac and loaded him on the stretcher for transport.

I think it is difficult for us as professionals to understand the fear that those not in this field have about medical things, particularly death. It would be pretty easy for most of us to say patient has xyz and death would be something quite capable of being done at home and without traumatizing the family, but that isn't what the family knows. For them they could be terrified of the thought. In that type of situation, the patient may benefit far more from a hospice house, or facility rather than being in a home were their last bit of time is spent with people terrified of them.

Another story this brings to mind is family friends who wanted help administering their fathers narcotics. They could not do it, even though he was terminal cancer and projected to die within days, they felt that if he died after they had given him meds that they would have "killed" him. They were smart people, understood everything I told them. But they still couldn't, it may have been irrational but it was just too much for them.

The family is our patient too, and while we always need to advocate for the patient's needs and desires, we have to temper that with the totality of the circumstances. A patient may desire to die at home, but the family may be resistant even after every bit of education and support. That is just how it is, we cannot judge them. We can only support both the patient and the family and try to provide an answer that satisfies the needs of both. We often think we know what the right answer is, but sometimes there are no right answers just answers that are amicable to both parties. The dying patient will always be our focus but the family has to live after the patient passes. They deserve support too, even when we disagree. This family in the op may grow to regret this decision but even then its not our place to say "I told you so" it is just to continue to support and care. As NicuGal wrote above, families often have a great deal of guilt over decisions that they believed were correct at the time. We shouldn't exaggerate this by pushing our POV on them, just provide them as much education and support as we can to support the best interest of the patient.

Ok, finished. Sorry, that was far longer then I intended.