Long-Term Care Decisions

How will our lives change after my child’s cardiac arrest?

A cardiac arrest can cause permanent injury to a child’s brain and body. You may be asked to make decisions about how to support your child. These decisions are complex and different for every family. Here, we will introduce some things families often have to think about.

Need for “technology dependence”

If your child suffered permanent brain injury after a cardiac arrest, your child may not be able to breathe, eat, walk, or talk on their own. Some children use technology, like a home ventilator or feeding pump, to help them outside of the hospital. When children need a medical device for life support like a ventilator or feeding pump at home and complex medical personnel support, this is called “technology dependence.”

Types of medical technology available

There are different types of medical technology that a child may use to help them breathe, get nutrition, and move around. Here are some of the more common types of machines:

Children who need to use medical technology usually have other machines they need at home too. Your child may need a hospital bed, medical monitors, machines for breathing treatments, and/or oxygen.  

These treatments and machines are complicated. If they have a trach or ventilator, children need to be watched very closely to make sure they are safe. Most families will need nurses to come into the home to help take care of their child. Many families change their routines and schedules so that they can also be home to take care of their child. If you choose to use medical technology for your child at home, your team will teach you how to use and feel comfortable with the machines. Your team will also help determine if your child is eligible to receive home nursing and will help coordinate with nursing agencies to provide this care.

Decisions around using medical technology

Decisions about using home life support for your child are complicated. Some loving families choose to use life support at home for their child after cardiac arrest. Other loving families choose to focus on their child’s comfort rather than putting them through other procedures. There are a lot of things to think about when making these decisions. 

Some benefits of medical technology include:

• • Your child may be able to leave the hospital. 
  • Your child may be able to do more rehab and therapy. 
  • Your child may live longer.

Some challenges of medical technology include:

• • Your child will need to have surgery to place a trach or G-tube. 
  • Your child may have ongoing pain or discomfort, even with life support. 
  • You will need to change your living space and routines to fit new medical supplies and to provide 24/7 care for your child. 
  • Your child may be too sick to come home and may need to live in a long-term care facility or a pediatric nursing home.

Talk with your medical team about what life would look like for your child and your family. You should also ask your doctors how long they think your child will need to use the machine(s). 

It can be helpful to talk about all options – including options where your child does NOT use these machines. It is okay to say that a life with machines is not one you want for your child, or what your child would want. Sometimes your medical team will talk about your child’s “quality of life.” Quality of life is something that you know best for your child. Talk with your doctors about things that are important to your child and your family. Your doctors can help you decide which option is best for your family.  

Other members of the medical team can help you work through these decisions:

• • Palliative Care: This is a group of people who are experts in talking with families about tough decisions. They are also experts in supporting you and your child to help with comfort. 
  • Spiritual Care: This is a group of people who can help support your spiritual healing. They may have more experience in a certain faith background but usually are trained to support all people and faiths. 
  • Child Life Specialist: This is a group of people who are trained to support children in tough times. They can help talk with your child (and any other children in your life such as siblings) about illness and what is important to them. 
  • Social Work: This is a group of people trained to support you as a family. They can help advocate for you with the medical team and help find helpful resources.
  • Case Managers: This is a group of people who act as a point person between the medical team, your child’s insurance company, providers of home medical equipment, and home nursing. They can help you advocate for the machines and therapies your child might need. 

Considerations for end of life

You may choose not to use home medical technology. This may be because your child is too sick or because using this technology would not fit your goals for your child’s life. In these cases, your medical team can support you and your child as your child nears the end of life.  

You can talk with your medical team about what would be important to you and your family if your child’s life is going to be short. Palliative care, spiritual care, child life, nursing, and social work can all help make sure your voice is heard. You can talk with these teams about how to make sure that your child’s dying is as peaceful as possible. These teams will help you to create memory items, such as handprints or hand molds.  

If your child is dying, your doctors can tell you what to expect in the dying process. They will prepare ways to make sure that your child is comfortable. They can provide medicines to treat any symptoms. 

If your child dies, they may be able to donate organs or tissues. Someone from an “Organ Procurement Organization” may come to talk with you about your options. They will talk with you about what organ donation looks like and what the steps would be. This team is fully separate from your medical team and is NOT involved with making decisions about your child’s care.  

The decision to donate organs is very personal. Some families do not want to donate organs for religious purposes, because they want to respect their child’s body or other reasons. Some families choose to donate because they want to give back. After all, they want their child to live on in another person or for other reasons. The only right answer is what is right for your family.

YOU are the expert in your child!

The overall most important thing to remember is that YOU know your child and your family better than anyone. Some families find it helpful to have a meeting with the child’s entire medical team to hear from everyone at once. Other families prefer to meet with one member of the team they know best. You and your child deserve to have all your questions answered. Your thoughts, feelings, and experiences matter.

Resources for more information

• • Family perspectives on deciding whether to place a trach: https://family-reflections.com/ 
  • Resources for families of children with or considering trach, including support groups: https://www.childhoodtrach.org/resources
  • Information about organ donation: https://optn.transplant.hrsa.gov/patients/about-donation/

Sources

Gulla, K.M., Sahoo, T., & Sachdev, A. (2020). Technology-dependent children. International Journal of Pediatrics & Adolescent Medicine,7(2),64-69. https://doi.org/10.1016/j.ijpam.2019.07.006

Hsu, B. (2023, July 19). Organ transplants in children and teens: AAP policy explained. American Academy of Pediatrics. https://www.healthychildren.org/English/health-issues/injuries-emergencies/Pages/Organ-Donation.aspx 

United States Congress, Office of Technology Assessment. (1987). Technology-dependent children: Hospital v. home care. United States Government Printing Office. https://ota.fas.org/reports/8728.pdf

Thank you to our contributors

Annie Gula & Neethi Pinto