Whether your child has recently been diagnosed with a serious illness or has been living with a chronic condition from the beginning of their lives, pediatric palliative care can provide them and your family with much needed support as you navigate the many demands an illness can put on you. Often confused with hospice care, which is typically only encountered as a loved one nears the end of their life, palliative care can begin at any point during the illness and is designed to make the patient as comfortable as possible through a variety of therapies that address their pain, mental health, and social needs. While it’s best to consult a doctor before beginning any new program, this guide can help you determine whether you should begin considering palliative care services for your child.
What is Pediatric Palliative Care?
Pediatric palliative care provides relief from symptoms and stress related to an illness in an effort to improve the quality of life for the child and their family. A specially educated team of medical professionals, including doctors, nurses, and therapists, will collaborate with social workers and counselors to develop a care plan with the support of the child’s primary doctor. It can be provided alongside treatments intended to cure the illness, and may take place in the home or care facility, depending on your child and family’s needs and desires.
While receiving palliative care, your child will likely take medications, engage in light exercise and physical therapy if possible, and undergo occupational therapy. These treatments help manage their pain and ensure their body is well cared for in addition to any other curative measures undertaken. Your child may also receive mental or spiritual counseling to help them manage their emotions and understand more about their illness. In some cases, alternative therapies (art, music, and play therapy) can be used to provide a creative outlet for emotions and social interaction with other children, which can decrease isolation within hospitals and introduce them to people in similar circumstances.
Palliative care also includes direct support for parents and siblings in the form of counseling, which can help them talk about and understand their own feelings about their loved one’s diagnosis. In addition to addressing mental health concerns, palliative care can take the form of respite care and give parents a chance to take a break. While the child is being cared for by the palliative care team, parents — who are often the primary caregivers for their child — can spend some time to rest and recharge or attend to other tasks as needed.
When to Begin this Care for my Child
While most doctors recommend beginning pediatric palliative care as early as possible to ensure that the child receives the highest quality of care, it’s never too late to add a palliative program to your child’s medical treatments. It is based on need, rather than on the severity of the illness or its progression, and is therefore at the discretion of the family.
If you choose not to begin palliative care right away, pay attention to your child’s and family’s needs to determine whether it may be a good idea. If your child is experiencing pain, shortness of breath, fatigue, constipation, nausea, and loss of appetite, particularly to the point that these physical symptoms interfere with their everyday lives, palliative care may be recommended. Mental and emotional symptoms, including difficulty sleeping, anxiety, depression, and behavioral concerns, can also be a contributing factor to your decision.
Don’t forget that palliative care is also designed to help parents and siblings as well. You may find that your child’s sibling is struggling to adapt to the many changes that an illness in the family can bring, or that despite your best efforts, managing your child’s care has become an overwhelming task. In these cases, palliative care can not only make the ill child feel better, but also provide your family with some much needed help that can lift a weight off of everyone affected by the illness.
Considering Palliative Care
Speak with KidsCare of the Rockies for more information about pediatric palliative care and whether you should begin considering these services for your child. KidsCare specializes in helping pediatric patients facing serious illness, such as cancer, neurodegenerative illnesses, and genetic illnesses, find physical and emotional comfort during a difficult time in their lives. Through a variety of medical and mental therapies, such as medication and play therapy, KidsCare creates individualized care plans designed to meet the needs of patients and their families. Palliative care can be provided both in an out-patient setting and in the home, allowing families to begin a treatment plan at any stage of illness and in any location, depending on what is best for them and for their child.