Pediatric Pallative & Hospice Care volunteer?

[Nave]

Hey SDN,

I am beginning to volunteer with Pediatric Hospice and wanted to hear what others peoples experiences were like. Advice, expectations, etc would be appreciated.

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[WheezyBaby]

You should be cognizant of the emotional toll it takes on you and seek "debriefing" as appropriate. There is no shame or weakness in having difficulty coping with dying children, and there are individuals who can help you learn to process your experience in a healthy manner. It certainly has the capacity to be both a personally rewarding experience and one in which you can have a meaningful impact on another's life. I assume / hope you will have a significant orientation, but the developmental stage of a child significant alters how they may/can view and process death, and parents will have their own desires regarding what information they want their children to have and how they want that information presented. Be respectful of those desires and very cautious with your words

 

[Goro]

I commend you for taking on such a demanding role. Being a parent, I wouldn't be able to last a day.

 

[Smash Williams]

I haven't done peds hospice specifically, but I have done a lot of volunteering with terminal kids in other outlets.

Every kid is different (and you will likely run into kids with developmental delays, which means age won't tell you everything). What's nice, especially about the younger ones, is they're so in the moment. They can be hooked up to every machine you've ever thought of and still want to play hot wheels or beat your butt in Uno. Depending on how long they've been sick/how medicalized they've become and their overall personality, they may be very comfortable with a large variety of new adults or very frightened. I've found that with withdrawn kiddos (as opposed to frightened), playing alongside them often draws them into play after a few minutes. They realize that you're there for fun and not there for pokes. I'm not sure what your role will be exactly, but let the kid be your guide in how to approach them.

As mentioned above, be extremely cognizant of how the family and child talk (or don't) about health situations. I've honestly found kids don't talk as much about medical situations as adults do - again with the being extremely in the moment - but it may come up. You may get more chatter about it from siblings, but again, you want to be sure you're using terms they've heard and not introducing new information that's not coming from the family.

Teenagers can run the whole gamut. I've known kids who were extremely angry and others who were more at peace with it. Some really loved making memory books for their friends and family. Some wanted nothing to do with anyone. My general persona with these guys is silly - I've found that get drawn into good humor and my willingness to act like a fool to get them to smile - but you have to go with what works for you. They can sniff out a fake immediately.

It's totally cliche, but when you're dealing with a sick kid in any role, you're really dealing with the entire family. I'm not sure what your role will be, but you may very well spend as much time with siblings, parents and other family as the kid. Siblings especially will be going through a difficult time they don't quite comprehend, so make sure you keep them included in things like crafts/play/etc, as long as it's appropriate. Depending on your volunteer role, they may get to know you quite well through the process.

Finally, be really cognizant of your attitude. Kids of all ages are wonderful at picking up on the emotions of others. If you're there to be a happy distraction, company or something else designed to be fun, make sure you can get there emotionally before going into the room. Like WheezyBaby said, that may involve debriefing before and after things, but when you're there, be as present and in the moment as the kids are. Bad things are going to happen, but you can help make that moment more fun.

I've found it to be a wonderful, painful, uplifting and at times terribly sad experience. I would not trade it for anything in the world.

 

[bee17]

I volunteered at a hospice facility for three years. We very rarely had children, but had clients in their 20s and 30s (aka young enough that their parents are around). I absolutely loved being a hospice volunteer. Yes, the families of clients are at a very painful time in their lives, and that can be difficult to witness. However, you will be in the privileged position of providing them with a tiny bit of comfort during a very vulnerable time.

In general, hospice families at our facility deeply appreciated volunteers. You cannot take away the pain of their loved one's passing, but you can offer a listening ear, a shoulder to cry on, or just a glass of water. Many people shy away from the terminally ill, and families and clients can often feel isolated. You get to be that person that says, "We'll be right here the whole time. We'll answer your questions. We are here for you." I'm sure pediatric hospice is very different in some senses, but I think you will be changed for the better by the experience. I know I was.

Some advice:

Ask the nurses lots of questions during training.
You don't have to do anything (aka assisting nurses) if you don't feel comfortable or haven't been trained.
Don't worry about "saying the right thing." There is no right thing. Just be kind and courteous.
Don't be afraid of touch. People shy away from the sick and dying. Be the person that takes their hand.
Instead of "Let me know if you need anything," say, "What can I get you?"
Don't be ashamed if the emotions get to you, but learn to control your facial expressions (or step out of the room if you can't). Don't add to their pain.

 

[girlofgrace7]

A huge difference between adult and child hospice is that children can still receive home hospice for a poor prognosis while simultaneously getting a full-court press for their medical condition. We put many children on it right after they leave the NICU if they have a lethal syndrome, even knowing that many of those kids will live about 3 years. Palliative care in general covers a lot more ground than that. Our hospital pal care team gets involved with any kid with a serious medical condition that will likely cut their life short (any kid preparing to get a trach, kids with conditions causing chronic pain, etc.).

It can be extremely sad, but hospice and pal care are also extremely rewarding. Rather than spending every moment mourning, you get to help people celebrate every moment they have left with loved ones. As doctors, it is hard on us when we have to accept that we can't "fix" a problem and cure an illness, but it's important to remember that how we help someone approach death is just as important as helping them live. There is something to be said for a peaceful and controlled death surrounded by loved ones and under the conditions that the family and patient chooses.

One of my most vivid moments over my past two years of residency was taking care of a patient as we withdrew care. Being a part of that moment, though sad, was also beautiful in its own way. There was a peace and an acceptance about it, and it was a blessing to both the mother and the medical team to get to help organize photos of the baby prior to death and mementos for the family to keep. We got to be present for a small bedside service by the family's pastor prior to the ET tube being removed, we got to watch the mom hold her baby for the first and the last time, and we were asked to be in pictures with the family because we had become their friends. It was the only patient funeral I've attended so far, and it meant the world to the family to have a couple of the doctors who took care of their daughter present. As sad as the situation, it was so much more controlled and peaceful than the way many patients die-- in pain, with little control over the situation by family or patient, and amid a flurry of activity and chaos with both family and doctors feeling they have failed.

Kudos to you for volunteering with hospice... it will serve you very well in your future career no matter what path you choose.

 

[PooshBag]

I've been a hospice volunteer for two years, but I have never had a hospice patient under the age of 60, so I can't be of much help. I will say that a simple touch of the hand or arm while speaking or listening really helps the patient's mood. Something about a simple touch makes the patient a bit more comfortable.

Hospice is one of the most meaningful activities I can think of. I commend you for the pediatric hospice volunteering.

 

[Nave]

You should be cognizant of the emotional toll it takes on you and seek "debriefing" as appropriate. There is no shame or weakness in having difficulty coping with dying children, and there are individuals who can help you learn to process your experience in a healthy manner. It certainly has the capacity to be both a personally rewarding experience and one in which you can have a meaningful impact on another's life. I assume / hope you will have a significant orientation, but the developmental stage of a child significant alters how they may/can view and process death, and parents will have their own desires regarding what information they want their children to have and how they want that information presented. Be respectful of those desires and very cautious with your words

Thank you for the advice! The hospital does offer grief counseling for its volunteers. And I will take advantage of that if neccessary. There is a four day training session as well.

I commend you for taking on such a demanding role. Being a parent, I wouldn't be able to last a day.

Goro, I appreciate the kind words.

Ive worked/volunteered hospice and also in peds. Its one thing to see someone in their 80s or 90s on hospice but its another to see a child.

To be honest I don't even know what to expect. What is your background in terms of clinical exposure and volunteering? It will be an intense and rewarding experience all around to say the least.

My clinical exposure and volunteering is sufficent enough to apply to medical school. But I agree, it will definitely be a rewarding experience!

I haven't done peds hospice specifically, but I have done a lot of volunteering with terminal kids in other outlets.

Every kid is different (and you will likely run into kids with developmental delays, which means age won't tell you everything). What's nice, especially about the younger ones, is they're so in the moment. They can be hooked up to every machine you've ever thought of and still want to play hot wheels or beat your butt in Uno. Depending on how long they've been sick/how medicalized they've become and their overall personality, they may be very comfortable with a large variety of new adults or very frightened. I've found that with withdrawn kiddos (as opposed to frightened), playing alongside them often draws them into play after a few minutes. They realize that you're there for fun and not there for pokes. I'm not sure what your role will be exactly, but let the kid be your guide in how to approach them.

As mentioned above, be extremely cognizant of how the family and child talk (or don't) about health situations. I've honestly found kids don't talk as much about medical situations as adults do - again with the being extremely in the moment - but it may come up. You may get more chatter about it from siblings, but again, you want to be sure you're using terms they've heard and not introducing new information that's not coming from the family.

Teenagers can run the whole gamut. I've known kids who were extremely angry and others who were more at peace with it. Some really loved making memory books for their friends and family. Some wanted nothing to do with anyone. My general persona with these guys is silly - I've found that get drawn into good humor and my willingness to act like a fool to get them to smile - but you have to go with what works for you. They can sniff out a fake immediately.

It's totally cliche, but when you're dealing with a sick kid in any role, you're really dealing with the entire family. I'm not sure what your role will be, but you may very well spend as much time with siblings, parents and other family as the kid. Siblings especially will be going through a difficult time they don't quite comprehend, so make sure you keep them included in things like crafts/play/etc, as long as it's appropriate. Depending on your volunteer role, they may get to know you quite well through the process.

Finally, be really cognizant of your attitude. Kids of all ages are wonderful at picking up on the emotions of others. If you're there to be a happy distraction, company or something else designed to be fun, make sure you can get there emotionally before going into the room. Like WheezyBaby said, that may involve debriefing before and after things, but when you're there, be as present and in the moment as the kids are. Bad things are going to happen, but you can help make that moment more fun.

I've found it to be a wonderful, painful, uplifting and at times terribly sad experience. I would not trade it for anything in the world.

Thank you for the advice! To answer your question about my role. The hopsital assigns me to a pediatric patient and prior to meeting the patient I meet with their social worker. The social worker talks to me about the patients situation and how I can help. This could be anything. Reading the patient stories, providing respite so the parents can leave the house, or occupying the patient's siblings time so they don't feel neglected while the parents are caring for the patient. The assignment is long term. That way you build a relationship with the patient and the family. And a majority of time it's in home hospice, not inpatient hospice at the hospital.

I volunteered at a hospice facility for three years. We very rarely had children, but had clients in their 20s and 30s (aka young enough that their parents are around). I absolutely loved being a hospice volunteer. Yes, the families of clients are at a very painful time in their lives, and that can be difficult to witness. However, you will be in the privileged position of providing them with a tiny bit of comfort during a very vulnerable time.

In general, hospice families at our facility deeply appreciated volunteers. You cannot take away the pain of their loved one's passing, but you can offer a listening ear, a shoulder to cry on, or just a glass of water. Many people shy away from the terminally ill, and families and clients can often feel isolated. You get to be that person that says, "We'll be right here the whole time. We'll answer your questions. We are here for you." I'm sure pediatric hospice is very different in some senses, but I think you will be changed for the better by the experience. I know I was.

Some advice:

Ask the nurses lots of questions during training.
You don't have to do anything (aka assisting nurses) if you don't feel comfortable or haven't been trained.
Don't worry about "saying the right thing." There is no right thing. Just be kind and courteous.
Don't be afraid of touch. People shy away from the sick and dying. Be the person that takes their hand.
Instead of "Let me know if you need anything," say, "What can I get you?"
Don't be ashamed if the emotions get to you, but learn to control your facial expressions (or step out of the room if you can't). Don't add to their pain.

Thank you for the advice! I appreciate it.

 

[WheezyBaby]

It sounds like a well designed program, enjoy your experience!

 

[Nave]

A huge difference between adult and child hospice is that children can still receive home hospice for a poor prognosis while simultaneously getting a full-court press for their medical condition. We put many children on it right after they leave the NICU if they have a lethal syndrome, even knowing that many of those kids will live about 3 years. Palliative care in general covers a lot more ground than that. Our hospital pal care team gets involved with any kid with a serious medical condition that will likely cut their life short (any kid preparing to get a trach, kids with conditions causing chronic pain, etc.).

It can be extremely sad, but hospice and pal care are also extremely rewarding. Rather than spending every moment mourning, you get to help people celebrate every moment they have left with loved ones. As doctors, it is hard on us when we have to accept that we can't "fix" a problem and cure an illness, but it's important to remember that how we help someone approach death is just as important as helping them live. There is something to be said for a peaceful and controlled death surrounded by loved ones and under the conditions that the family and patient chooses.

One of my most vivid moments over my past two years of residency was taking care of a patient as we withdrew care. Being a part of that moment, though sad, was also beautiful in its own way. There was a peace and an acceptance about it, and it was a blessing to both the mother and the medical team to get to help organize photos of the baby prior to death and mementos for the family to keep. We got to be present for a small bedside service by the family's pastor prior to the ET tube being removed, we got to watch the mom hold her baby for the first and the last time, and we were asked to be in pictures with the family because we had become their friends. It was the only patient funeral I've attended so far, and it meant the world to the family to have a couple of the doctors who took care of their daughter present. As sad as the situation, it was so much more controlled and peaceful than the way many patients die-- in pain, with little control over the situation by family or patient, and amid a flurry of activity and chaos with both family and doctors feeling they have failed.

Kudos to you for volunteering with hospice... it will serve you very well in your future career no matter what path you choose.

Wow. Thank you for sharing your experience!

I've been a hospice volunteer for two years, but I have never had a hospice patient under the age of 60, so I can't be of much help. I will say that a simple touch of the hand or arm while speaking or listening really helps the patient's mood. Something about a simple touch makes the patient a bit more comfortable.

Hospice is one of the most meaningful activities I can think of. I commend you for the pediatric hospice volunteering.

I definitely agree. Small things go a long way. Thank you for the advice!

 

[Avicenna]

Goddamn i got sad *thinking* about this. Bro you sure you up for this

 

[Nave]

Goddamn i got sad *thinking* about this. Bro you sure you up for this

I guess we will find out!

 

[Nave]

I don't mean to necrobump this thread, but I just got back from my patients funeral. I could really use some advice as I am having a bit of hard time.

 

[21Rush12]

I don't mean to necrobump this thread, but I just got back from my patients funeral. I could really use some advice as I am having a bit of hard time.

I am truly sorry to hear...I can only offer my own perspective but I hope that some of it resonates with you. I know how much it hurts to be in your shoes, and you have to know you made the best difference you could for that person while they were here, and their life was better because of it.

You are not wrong to feel pain and sadness, you lost someone too.

You are also not wrong if you don’t feel anything; you aren’t heartless, you’re just coping differently with the situation. Grief takes many forms.

Many wonderful patients I have known well have died, some whose deaths were a merciful end to suffering and others who had so much left to live for. My solace comes from acknowledging their importance to me and making sure that I don’t forget their kindness. I see the strength that they had and how hard they fought, and it reminds me that I can’t give up. I choose to remember these people and their struggles in an effort to keep my perspective on life and what drives me forward on the path I’m on.

My point is, this type of situation is something that you will encounter moving forward. Every time is different, every person is different, and each of us in turn finds a way to handle the inevitable loss of the people we try to help. Your duty to yourself and to them is to find a way to turn the pain you feel into something meaningful. Acknowledge it, feel it, understand it, and allow yourself to move on when you are ready.

 

[tantacles]

I don't mean to necrobump this thread, but I just got back from my patients funeral. I could really use some advice as I am having a bit of hard time.

I think it might be helpful to clarify what you're looking for advice on. Coping? Are you thinking of quitting and want to know if it's reasonable to do so (it is!)? Do you need to know how to help comfort families?

It might help to let us know what you're having a hard time with as well. The experience of being involved in a terminally ill patient's life is distinctly different for everyone, but it might be easier for us to help you with some guidance as to what you are experiencing and what you are finding difficult.

 

[Nave]

I think it might be helpful to clarify what you're looking for advice on. Coping? Are you thinking of quitting and want to know if it's reasonable to do so (it is!)? Do you need to know how to help comfort families?

It might help to let us know what you're having a hard time with as well. The experience of being involved in a terminally ill patient's life is distinctly different for everyone, but it might be easier for us to help you with some guidance as to what you are experiencing and what you are finding difficult.

Sorry @tantacles. I should have been a bit more specific. I wrote that in a late night fog. Anyway, I suppose I am mostly looking for solidarity and place to talk about my emotions. The program does offer it volunteer's counseling, but I feel more comfortable on an anonymous internet forum. For me, it was really just the uncomfortability of the whole situation. It felt so personal and almost as if I shouldn't have been there. I didn't know how to react, I didn't know what to say, and I didn't know what to feel. And I of course know there isn't a right answer to any of these questions, but that doesn't stop me begging the question.

I suppose my question for you is that does it ever get easier? Do you ever become more comfortable seeing those who you cared for suffering? Do you ever become comfortable being apart of your patients families deeply personal/vulnerable moments? I keep replaying the same moment in my head over and over again. The patients family was lined up after the funeral so that the guests could say their last words. As I was walking up I tried over and over again to think about what I was going to say. By the time I got the last family member in line I bursted into tears and just hugged her. I didn't say anything. I was really lost for words at that point.

Also, I don't want to stop volunteering either. This experience has been far too rich for me in terms of my own personal growth. I want to continue to put myself in situations that I find uncomfortable. I am, however, going to be taking time off before I get assigned me next patient.

 

[tantacles]

Sorry @tantacles. I should have been a bit more specific. I wrote that in a late night fog. Anyway, I suppose I am mostly looking for solidarity and place to talk about my emotions. The program does offer it volunteer's counseling, but I feel more comfortable on an anonymous internet forum. For me, it was really just the uncomfortability of the whole situation. It felt so personal and almost as if I shouldn't have been there. I didn't know how to react, I didn't know what to say, and I didn't know what to feel. And I of course know there isn't a right answer to any of these questions, but that doesn't stop me begging the question.

I suppose my question for you is that does it ever get easier? Do you ever become more comfortable seeing those who you cared for suffering? Do you ever become comfortable being apart of your patients families deeply personal/vulnerable moments? I keep replaying the same moment in my head over and over again. The patients family was lined up after the funeral so that the guests could say their last words. As I was walking up I tried over and over again to think about what I was going to say. By the time I got the last family member in line I bursted into tears and just hugged her. I didn't say anything. I was really lost for words at that point.

For me, it did get easier, but that doesn't mean it gets easier for everyone. For some people this experience will always be awful and soul crushing. What helped me, though, was realizing that it's all right for the family to be sad; my job working with any ill patient is not to change the emotions of the family, but to help them process those emotions. Sometimes (although rarely at this point for me), that means that I experience negative emotions. Sometimes that means it's my job to sit there and be yelled at. I haven't been to the funeral of one of my patients, and the lineup of people as you describe does not sound like something that would provide me with closure, but then it's really not for me. It's for the family who actually knew this patient non-medically.

Honestly, my reaction to this kind of situation isn't an emotional one anymore, but that's just because I've seen many patients expire. Few of them have been children, but for the ones that were I just have had to remind myself that the patient is not my child. That doesn't mean that I can't have emotions, and that doesn't meant that I haven't suffered a loss if I knew them, but really, the loss isn't mine.

And in situations like the one you described, you don't really need to say anything if nothing comes to mind.

Also, I don't want to stop volunteering either. This experience has been far too rich for me in terms of my own personal growth. I want to continue to put myself in situations that I find uncomfortable. I am, however, going to be taking time off before I get assigned me next patient.

I think some time away from this situation would be healthy for you. It sounds like you were very attached to this family and this patient, which is not bad, but it does mean that you might need more time to recover from this experience.