Caring for a child with a serious or life-limiting illness is a true labor of love, especially for parents who have plenty of questions and concerns of their own about providing quality care. Obtaining palliative care services can be an excellent way to not only ensure your child is getting the care they need, but to give yourself time to recharge when you need it. These palliative care guidelines will help you understand what to look for in high-quality palliative care as you navigate your child’s illness.
What is Pediatric Palliative Care?
During palliative care, children receive medication, massage therapy, mental health counseling, spiritual support, and other forms of comprehensive treatment to make them as comfortable as possible in addition to curative treatments from their primary care physicians. Care plans are individualized according to the child’s illness and needs, and families also receive access to valuable mental and spiritual health resources.
In addition to helping children feel more comfortable physically, pediatric palliative care can offer other benefits. Palliative care can improve their mood, give them an outlet for their complex emotions, give them much-needed social interaction with members of their care team, and exposure to art, music, or play therapy sessions. Families benefit from the variety of resources and information they receive, and caregivers can take advantage of the time the team spends with their child to rest and manage other tasks. Family members also benefit from comprehensive mental and spiritual counseling, which is offered to help them cope with their loved one’s illness.
Evaluating Quality of Care
When determining whether a care provider is offering the best quality of care possible, consider the following elements. These, among other factors, show that your child’s care team is knowledgeable, caring, and capable of acting as a resource that improves your family’s quality of life.
Your child’s palliative care team should be made up of medical professionals and volunteers who are specially educated in palliative care while also representing a wide range of specializations. A care team should consist of multiple people, including doctors, nurses, therapists, child life specialists, and sometimes volunteers, each of whom is able to provide specialized care to ensure that their services are as targeted as possible. An individual or smaller team would likely offer more generalized care that may not meet all of your child’s needs.
Palliative Care Screening
Before your child’s palliative care team begins their work, a representative should conduct a comprehensive palliative care screening. During the screening, the representative will consult with caregivers and doctors to determine what your child needs and how best to meet those needs. Without this screening, it is impossible to create an individualized plan that accurately provides the care that will best support your child.
Team Education and Emotional Support
Palliative care, like other forms of caregiving, can be emotionally draining for those offering their support. Your child’s palliative care team members should have access to a variety of emotional support outlets, whether company-provided counseling or regular check-ins with other team members. They should also be able to continually educate themselves on best practices in palliative care, whether through their own research or by speaking with team members about the latest news.
When dealing with a serious illness, some periods are better than others. As your child’s illness changes, their needs will differ as well. A high quality palliative care team should be able to continually adapt and improve their care methods as they get to know your family better and as your child’s condition changes. An inability to do so might mean that your child will not feel their best, despite continual care.
Communication is a critical aspect of palliative care. Your child’s care team should be able to communicate vital information clearly, quickly, and effectively to you, each other, and your child’s other doctors as necessary. This ensures that nothing important is forgotten and all necessary information is incorporated into everyone’s understanding of how to best care for your child. It can also help you get your own questions answered more easily, providing peace of mind and confidence as you care for your child.
Considering Palliative Care Services
If you’re considering obtaining palliative care services, contact KidsCare of the Rockies to learn more about how to assess palliative care services and inquire about the provider’s offerings. KidsCare organizes interdisciplinary teams of medical professionals and volunteers who take the time to get to know your family and provide individualized and comprehensive care to children facing illnesses like cancer, neurodegenerative diseases, and heart conditions, among other serious conditions. The organization strives to provide the highest-quality care possible to children and families in the comfort of their own homes.