Hello Barbara, I have a question that has been bothering me a lot. I take care of kids battling cancer, most of them being on palliative care. Is it okay to share some of the things the children tell me with their parents? One of my kids once told me that he kept seeing death, he said it repeatedly but I didn’t share and two weeks after, he got his angel wings. Another child whispered that he was sorry for letting me down, he said he was tired of treatment and wanted to go home (heavenly home) and two days after he was gone. Previously, one of the kids about twelve years old told me that she was going home and it was a different home because she had to use white stairs and again, just like that, she was gone a few days after she told me that. All these cases have left me feeling so guilty. I think I should have told someone or even the parents. My question is how would they respond, positively or negatively? Please advise me what is the right thing to do?
Before I start answering your question of "Should we tell parents that their child is talking about death?" I need to say I am not an expert on children as they approach the end of their life. My experience has been with adults and very few children. What I offer you is my opinion but not necessarily the truth with a capital "T."
Each situation is unique. Some parents would want to hear what their child is saying, thinking and experiencing, others may not. For some, knowing will be comforting, for others upsetting ---- which puts you in a no win situation. BUT, really, our work is a no win situation. We are the bearer of sad, generally bad news. That is what we do.
My guess is there will be as many answers to your question as there are people you ask and I'm not sure there is a right or wrong to any of the responses.
Here are my personal thoughts: as a parent I would want to know what my child is experiencing, so I would want you to tell me my child is seeing angels. I would want to talk with them about their angels. They could teach me what the Other World is like. It would be very comforting for me (for others, however, it may not be).
As a professional, I would tell the family about their child's seeing and talking to, whatever the child is saying and describing, but I would not add that in other, similar cases the child has died shortly thereafter.
Part of our job in working with end of life situations is to prepare the family for approaching death. I would tell the family if I thought the child's condition was deteriorating, if they were showing signs of approaching death (conveying that information is part of our job), but seeing angels would not be the only sign of approaching death I would look for or use as an assessment tool.
I would use seeing angels as a sign that death is on the horizon just as I use adults talking about angels (and many do) that death is coming closer. For adults it is in the weeks before death that the angels and loved ones that have died before begin to appear. I am not familiar enough with children at the end of life to know their timeline.
We, as a people, are never truly prepared for death but with guidance, honestly, and gentleness we, as caregivers for those people, can ease the fear and uncertainty most bring to the bedside. Preparing the family and significant others for the eventual expected death is what we do, that includes talking about angels.
Something more about... “Should we tell parents what their dying child is saying?”
Our booklets, The Tree of Life and I Am Standing Upon the Seashore, were created to help children—and the child in all of us—make sense of what’s happening when someone we love is dying. Through simple poems, gentle metaphors, and coloring pages, these booklets open the door to talk about the final goodbye.
Here is a review of how one hospice uses these booklets:
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I've given these away as a hospice nurse. When little kids are losing someone close, this helps them feel included, and offers an opportunity for them to ask questions about what is happening. Patients often ask for a copy to give to a kiddo, giving the opening for a conversation about the impending death. It isn't easy to figure out how to open this conversation with kids. Using this book, I have had an easy time facilitating the start of that conversation. Kids usually DO have questions, and given this opportunity, will benefit from the opportunity to ask away.
7 comments
Rhonda DeBough
As a mother of a child who has died, I will add this to the conversation.
1. I am surprised at all of the euphemisms for death this professional has. I don’t think it’s helpful to skirt around death.
2. If possible, ask the child if they want you to share this with their parents. Respect their preference.
3. Ask the parents if they want to know. Respect their preference.
No reason to guess on any of this.
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BK Books replied:
Rhonda, Having walked in those shoes thank you for sharing. Blessings! Barbara
As a mother of a child who has died, I will add this to the conversation.
1. I am surprised at all of the euphemisms for death this professional has. I don’t think it’s helpful to skirt around death.
2. If possible, ask the child if they want you to share this with their parents. Respect their preference.
3. Ask the parents if they want to know. Respect their preference.
No reason to guess on any of this.
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BK Books replied:
Rhonda, Having walked in those shoes thank you for sharing. Blessings! Barbara
Meredith Graff
I was 11 years in 1965 when my 12 years old cousin died of Leukemia. She was a “downwinder” who grew up in Southern UT not far from where the nuclear testing took place in the late 1950’s. She was very smart – she had been bumped ahead to 8th grade – and she played several musical instruments. After the funeral, my mother’s family gathered at my aunt and uncle’s home in Cedar City, UT. The living room was crowded so I was sitting on the floor behind my uncle’s chair. I am almost 72 years old now but I can distinctly remember him retelling that my cousin asked hm a couple of weeks before she died if she was dying. He said he lied to her and told her “no,” that she was going to recover. This was while she was fighting monstrous chicken pox that took advantage of her failed immune system. On our car trip back to Southern California, I told my parents that if something ever happened to me like that, to please tell me what was going on, and give me the opportunity to come to grips with my certain death. Every person has a right to know they are dying. Every person has a right to talk about what they are seeing, feeling, intuiting as they near death. My cousin was very smart. I am sure she knew. It had to be so hard for her to not be able to talk about what was happening and what would happen. Instead, her parents lied to her because they were too afraid to be there for her. They were religious people but they were incapable of this last gift to their daughter – to give her peace as the end of her life neared.
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BK Books replied:
Meredith, thank you so much for sharing your experience with your cousin. Hopefully your personal experience will give others something to think about. Blessings to you. Barbara
I was 11 years in 1965 when my 12 years old cousin died of Leukemia. She was a “downwinder” who grew up in Southern UT not far from where the nuclear testing took place in the late 1950’s. She was very smart – she had been bumped ahead to 8th grade – and she played several musical instruments. After the funeral, my mother’s family gathered at my aunt and uncle’s home in Cedar City, UT. The living room was crowded so I was sitting on the floor behind my uncle’s chair. I am almost 72 years old now but I can distinctly remember him retelling that my cousin asked hm a couple of weeks before she died if she was dying. He said he lied to her and told her “no,” that she was going to recover. This was while she was fighting monstrous chicken pox that took advantage of her failed immune system. On our car trip back to Southern California, I told my parents that if something ever happened to me like that, to please tell me what was going on, and give me the opportunity to come to grips with my certain death. Every person has a right to know they are dying. Every person has a right to talk about what they are seeing, feeling, intuiting as they near death. My cousin was very smart. I am sure she knew. It had to be so hard for her to not be able to talk about what was happening and what would happen. Instead, her parents lied to her because they were too afraid to be there for her. They were religious people but they were incapable of this last gift to their daughter – to give her peace as the end of her life neared.
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BK Books replied:
Meredith, thank you so much for sharing your experience with your cousin. Hopefully your personal experience will give others something to think about. Blessings to you. Barbara
Cinda McDonald
This is a big topic with many layers. I’m a certified child life specialist and I’ve worked with dying children and their siblings, in pediatric hospice as well as with children loved by a dying adult patient, in adult hospice. I currently lead a team of certified child life specialists who exclusively support children loved by adult patients with serious and/or terminal conditions, with an adult Supportive Palliative Care team, in a hospital. We provide psychosocial support as early as at the time of diagnosis or admission following injury, throughout the medical journey and when a cure isn’t possible, our support continues up to, during, and after death. We include children in the dying process because it is part of life. We always have in-depth conversations with the parents before meeting with the children. We seek their permission for the layers of conversation. And we always stay within the lines of what the parents have asked of us—even if we feel there is more that is needed, for the child.
We are not counselors so we are not bound by an ethical boundary to not discuss anything outside of our 1:1, but we want to have a trusting relationship with the child so we ask them for their opinion. If there is a safety concern, i.e., suicidal ideation, self-harm, thoughts/actions to harm others, drug or alcohol use, etc, then we always tell the parent. But if a child were to tell me that she has been seeing angels, I would ask if she would like for her parents to know. If she was good with that, I would ask if she wanted me to tell them or if she wanted to do it. If she asked for me to tell them, then I would ask if she wants to be present, or not, when I tell them.
The most important thing is keeping the open, honest communication going and keep the children involved to the degree they want to be involved. Let them lead whenever possible and understand the need to override their choice of confidentiality, if safety is at risk.
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BK Books replied:
Cinda, thank you so much for sharing your expertise with us. I applaud the hospital that supports the kind of comprehensive care you are giving. If only all areas of our medical system would do the same. Blessings to you and your hospital for the important work you are doing. Barbara
This is a big topic with many layers. I’m a certified child life specialist and I’ve worked with dying children and their siblings, in pediatric hospice as well as with children loved by a dying adult patient, in adult hospice. I currently lead a team of certified child life specialists who exclusively support children loved by adult patients with serious and/or terminal conditions, with an adult Supportive Palliative Care team, in a hospital. We provide psychosocial support as early as at the time of diagnosis or admission following injury, throughout the medical journey and when a cure isn’t possible, our support continues up to, during, and after death. We include children in the dying process because it is part of life. We always have in-depth conversations with the parents before meeting with the children. We seek their permission for the layers of conversation. And we always stay within the lines of what the parents have asked of us—even if we feel there is more that is needed, for the child.
We are not counselors so we are not bound by an ethical boundary to not discuss anything outside of our 1:1, but we want to have a trusting relationship with the child so we ask them for their opinion. If there is a safety concern, i.e., suicidal ideation, self-harm, thoughts/actions to harm others, drug or alcohol use, etc, then we always tell the parent. But if a child were to tell me that she has been seeing angels, I would ask if she would like for her parents to know. If she was good with that, I would ask if she wanted me to tell them or if she wanted to do it. If she asked for me to tell them, then I would ask if she wants to be present, or not, when I tell them.
The most important thing is keeping the open, honest communication going and keep the children involved to the degree they want to be involved. Let them lead whenever possible and understand the need to override their choice of confidentiality, if safety is at risk.
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BK Books replied:
Cinda, thank you so much for sharing your expertise with us. I applaud the hospital that supports the kind of comprehensive care you are giving. If only all areas of our medical system would do the same. Blessings to you and your hospital for the important work you are doing. Barbara
Misty, RN CHPN
In my experience as a hospice nurse I have found that asking the family and patients up front what kind and how detailed of information they would like better prepares me to recognize the things I should and should not share. Like Barbara said, some may not want to know all of the details but others may. I always ask this at the start of my admissions and care conferences and check in to see if they have changed their minds as end of life gets closer.
In my experience as a hospice nurse I have found that asking the family and patients up front what kind and how detailed of information they would like better prepares me to recognize the things I should and should not share. Like Barbara said, some may not want to know all of the details but others may. I always ask this at the start of my admissions and care conferences and check in to see if they have changed their minds as end of life gets closer.
Diane
Not a nurse but a healthcare chaplain…if this was said to me in a confidential session, especially if the patient was a teen, not sure I would share with parent out of a desire to respect the patient’s privacy. Might ask if they had said this to parents but wouldn’t necessarily encourage them to unless they felt like it was a conversation they needed to have to be at peace…
Just a thought…
Not a nurse but a healthcare chaplain…if this was said to me in a confidential session, especially if the patient was a teen, not sure I would share with parent out of a desire to respect the patient’s privacy. Might ask if they had said this to parents but wouldn’t necessarily encourage them to unless they felt like it was a conversation they needed to have to be at peace…
Just a thought…
Sandra Stedinger
Thank you for sharing your insight into this delicate topic. My elderly father had dreams of spaceships and aliens coming to take him away, in the weeks before he left us. We never verified these reports, but I wouldn’t doubt him. He was a very smart guy, and a detailed observer.
Thank you for sharing your insight into this delicate topic. My elderly father had dreams of spaceships and aliens coming to take him away, in the weeks before he left us. We never verified these reports, but I wouldn’t doubt him. He was a very smart guy, and a detailed observer.
Robin, RN CHPN
That is heavy stuff!! I have been a hospice nurse for over 9 years. My experience with dying children is minimal. I am a mom of a child with an immunodeficiency who had a near death experience. Again, that is a very heavy question! As a hospice nurse I would say that information should be shared with parents. As a parent, I’m not sure I would be prepared nor know how to process that information.
Those deep, incredible conversations we have the privilege of sharing with our patients is so very moving. It is so challenging for us to always know how to share what our patients have confided in us.
Certainly not an answer to the question, please take what is shared with you as a gift and use it to continue comfort the patients we are privileged to help.
That is heavy stuff!! I have been a hospice nurse for over 9 years. My experience with dying children is minimal. I am a mom of a child with an immunodeficiency who had a near death experience. Again, that is a very heavy question! As a hospice nurse I would say that information should be shared with parents. As a parent, I’m not sure I would be prepared nor know how to process that information.
Those deep, incredible conversations we have the privilege of sharing with our patients is so very moving. It is so challenging for us to always know how to share what our patients have confided in us.
Certainly not an answer to the question, please take what is shared with you as a gift and use it to continue comfort the patients we are privileged to help.