End-of-Life & Beyond Care

Caring for kids and their families during end-of-life isn't easy for anybody. Here are some ways you make everyone's transition more peaceful and so nobody ever feels alone -- for the child, family and provider.  

Compiled by Luka's mom, Julia, with thoughts from fellow grieving families on what matters to them during end-of-life and beyond care. This list can never be complete, if you'd like to share your experience please contact Julia at julia@lukathelionfoundation.org.

Luka's big sister was granted special permission by the hospital to visit him in the PICU during flu restriction season so that she could say goodbye. The big bed was provided so they could be close to each other. 

Ask & Adjust

Everyone's preferences are different, ask to find out what they are then adjust as needed. Then share with other providers to help with consistency.

Prepare a list of questions in your mind by anticipating what the family may need to consider that they are not even aware of, and try to find the right moment to ask (this is an art and not a science). Sometimes too many questions at once, or at the wrong moment, can feel overwhelming in a sea of an already full emotional environment. Nevertheless, if you are unsure - ask. 

Is there anyone that I can call for you? Would you like a bigger room or bed? Are you comfortable with guests coming in the room, or would you prefer privacy? Are their any signs you would like us to put on your door? Any consults or meds you'd like us to change? Monitor alarms we can stop? Would you like another opinion? Is there anything that we can do, or not do for you? 

If your questions are matched with questions that you don't know the answer to, check into it more. Try not to say no. To the family, this may be some of their last moments and a yes can change the trajectory of the rest of their lives.  


This pillow was made for Luka by 5CH nurses and signed on the back, "Love, Your 5CH Family." Special mementos like this are cherished even more during end-of-life care and beyond.  

Be there & Blend in

Communicating isn't always with words. Sometimes you can make the biggest impact just by being there.

Take the moment to sit with a kid or family and listen. If the patient and family are open to visitors, cross through the door. Your simple presence can help both the child, family, and patient's transition process of letting go. If being there isn't possible, send your thoughts or a memento with someone to share for you. 

Additionally, when you sense families need some space yet there are meds to hang, try to blend into the room to allow for the moment to happen without disruption. It's that balance of knowing when to be there and when to blend in. 


His last day out of bed, Luka got a hug from his nurse friend, Kaitlin, even though he just wanted her to help him reach his beloved water bottle. We all remember those hugs more than anything else. 

Care Compassionately

Caring for kids and families at any stage of life requires compassion, especially during this transitional stage.

Compassion is the fastest way to building a relationship based on meaning. It's saying the child's name sweetly, touching their hand, giving a hug, singing a song, adjusting stuffed animals, bringing an extra blanket, leaving a note, gently sharing some signs that the body is preparing itself. Forming relationships through compassion will support the patient, family, and provider throughout end-of-life care and beyond.  

We were once told by a provider, "When there's no more medicine, there's always love." It's true during the course of a kid's life, during end-of-life, and beyond. And, both their family and the provider will remember this compassion forever. 

Presented by Julia Fisher, End-of-Life Nursing Education Conference | a compilation of thoughts from her own and other grieving families