Pediatric End of Life Care: Understanding Approaches and Support for Families
Pediatric end of life care encompasses the support and management provided to children with life-limiting conditions. It addresses not only the physical symptoms, but also the emotional and psychological needs of both the child and their family. The goal is to ensure that the child experiences comfort and dignity during their final days, while also providing guidance and support to the family members coping with this difficult transition.
When facing a serious illness with a child, the focus is always on their well-being. The main focus of end of life and palliative care for children is on helping children and their families to live as well and fully as possible [Source: Better Health Channel]. However, there may come a time when curative treatment is no longer an option, and the priority shifts to comfort and making the most of the precious time together.
Understanding the Unique Challenges of Pediatric End of Life Care
Pediatric end of life care presents unique challenges that can be emotionally taxing. Even though your child has not yet passed away, it is also still possible to have similar painful feelings of grief before a loved one has died, especially for those providing care to a person at the end of life. Grief therapists refer to this as anticipatory grief and even though it is a normal process, many people don’t recognize it when it occurs. You may feel a sense of helplessness, anger, or guilt. It’s important to remember that these feelings are normal, and there is no right or wrong way to grieve.
Here are some of the common emotional challenges caregivers may face:
- Helplessness: Watching your child suffer can be incredibly difficult and may make you feel helpless. You may feel like there is nothing you can do to ease their pain or suffering.
- Anger: Anger is a common emotion to experience during this time. You may feel angry at the illness, at the doctors, or even at yourself. It’s important to remember that these feelings are normal and that it’s okay to express them.
- Guilt: You may feel guilty about your child’s illness, especially if you believe that you could have done something to prevent it. It’s important to remember that you are not to blame for your child’s illness.
- Fear: The fear of losing your child can be overwhelming. You may also fear that your child will suffer.
- Grief: Grief is a natural response to loss. It’s important to allow yourself to grieve, even if your child is still alive.
Remember that these feelings are normal, and there is no right or wrong way to grieve. If you are struggling to cope, please reach out to a therapist or support group. There are many people who care about you and want to help you through this difficult time, including the staff and therapists The Amy Davis Hospice Support Center (built in 2020) with dedicated children’s and family counseling areas.
What Children & Their Families Need When Navigating Pediatric End of Life Care
Support for pediatric end of life care situations encompasses essential emotional and physical support for the child and family, along with ensuring there is a personalized plan in place for that specific family. Palliative care [or end of life care] is based on need, not prognosis. Both aspects play a critical role in the emotional and psychological healing process.
Providing Emotional and Physical Support
As a caregiver, it’s important to seek out resources that can help you provide both emotional and physical support for your child and your family. Consider working closely with your child’s doctor to develop a personalized plan for managing pain and other symptoms. Additionally, seeking emotional counseling for both your child and your family can help you all cope with the emotional challenges of this time. Creating a personalized care plan that incorporates your family’s wishes and preferences can also help you feel more in control and involved in your child’s care.
Holistic Approach
In the realm of pediatric end of life care, a holistic approach is essential to ensure that both your child and your family receive the comprehensive support needed during this challenging time. By addressing the physical, emotional, and spiritual needs of all involved, you’re able to create a more comfortable and dignified environment. Examples of a holistic approach to care that are commonly used include:
- Art and music therapy: Creative outlets like art and music therapy can provide a safe and meaningful space for your child to express their emotions. Engaging in these activities can help them process their feelings, find comfort, and build resilience.
- Spiritual support: Spiritual support can play a vital role in helping individuals cope with the emotional challenges of pediatric end of life care. Whether you seek solace in prayer, meditation, or simply conversation, having access to spiritual guidance can provide comfort, hope, and a sense of connection.
- Respite care: Caring for a child with a life-limiting illness can be physically and emotionally exhausting. Respite care provides temporary breaks for families, allowing caregivers to recharge and focus on their own well-being. These moments of rest can help prevent burnout and ensure that you have the energy and resilience needed to continue providing care.
Tailoring Care to Your Needs With Specialized Services
Every family’s experience with pediatric end of life care is unique. That’s why it’s important to address their needs with a personalized approach that tailors our services to meet your specific needs. By understanding your child’s individual preferences and your family’s values, we can create a care plan that truly reflects your wishes and provides the comfort and support you deserve.
Pain Management: Ensuring Comfort and Reducing Suffering
Pediatric end-of-life care often involves managing pain and other symptoms. It’s important to seek out effective pain management solutions that minimize discomfort and improve your child’s quality of life. Work closely with your child’s medical team to develop a personalized treatment plan that addresses their specific needs.
Emotional Counseling: Supporting You and Your Family
The emotional toll of pediatric end-of-life care can be significant. Consider seeking emotional counseling for both your child and your family. Trained therapists can provide support and guidance, helping children express their feelings and navigate the emotional challenges of this time. Additionally, therapists can offer support for parents and caregivers, providing tools and strategies for coping with their own emotions and supporting their child.
Family-Centered Care Plans: A Collaborative Approach
Families should be actively involved in their child’s care. Working closely with your child’s medical team, you can develop a personalized care plan that takes into account your child’s individual needs, your family’s preferences, and your goals for care. This collaborative approach can help you feel more in control and involved in your child’s care, ensuring that their needs are met and their wishes are respected.
No One Should Walk This Path Alone
The Footprints Children’s Services program at The Denver Hospice empowers families to focus on creating lasting memories with their children during this precious time. We understand that no two situations are the same, which is why we customize our care to meet the unique needs of each family.
Learn More About The Denver Hospice Footprints Children’s Services
Footprints is a program of The Denver Hospice, the area’s leading, largest, and most trusted not-for-profit provider of life-enhancing hospice and palliative care. Its Denver campus includes the new Amy Davis Hospice Support Center with dedicated children’s and family counseling areas. The Footprints team includes a pediatrician, nurse practitioner, child life specialists, registered nurses, chaplains, massage therapists, and social workers, all with extensive experience caring for children.
To learn more about how The Denver Hospice can support your family during this difficult time, please visit our Footprints Children’s Services program page: Link to Footprints Children’s Services page
Together, we can make this journey as comfortable and dignified as possible for your child and your family.
