Q. What does Supportive Care do?
A. Supportive care is an extra layer of support for children with serious illnesses and their families. Supportive care doctors and nurses have special training in helping to manage pain and symptoms associated with serious pediatric medical conditions. Supportive care focuses on the whole child, not just their illness. Integrative services to treat the mind, body and spirit are an important aspect of the Supportive Care treatment plan. The Supportive Care team realizes that when a child gets sick, the entire family suffers. Listening to families, helping to establish care goals that reflect the wishes of both your child and your family and then communicating those goals to your child’s treating team are priorities for Supportive Care specialists.
Q. How do I know if Supportive Care is right for my child?
A. Supportive Care (also called Palliative Care) may be right for your child if he/she is experiencing pain or other symptoms due to serious illness, if your child has had recurrent hospitalizations or trips to the emergency department or if there are difficult medical decisions that you need support in making. Serious medical conditions include, but are not limited, to:
- Cystic fibrosis
- Muscle disease
- Metabolic disease
- Severe congenital cardiac disease
- Cerebral Palsy with respiratory of gastrointestinal complications
- Short gut syndrome
- Children awaiting organ transplant
- Structural brain abnormalities
- Neurodegenerative diseases
- Genetic disorders
- Other conditions that lead to medical complexity
Q. When can Supportive Care start?
A. Supportive Care can help children at any stage of illness, from diagnosis and throughout the course of treatment. Start by asking your doctor or nurses. Your child’s doctor may make a referral, or you can give our team a call yourself. We have found that we can be most helpful when we begin the journey with a family at the time of diagnosis and continue with them for as long as they may need.
Q. What does a Supportive or Palliative doctor do that’s different from what my child’s other doctors do?
Your child’s other doctors focus on treating their disease or condition. Palliative doctors concentrate on preventing and alleviating suffering, improving quality of life and helping your entire family cope with the stresses and burdens of serious illness.
Q. What can I expect?
A. Your child’s plan of care will be discussed with you to make sure your child’s needs and wishes are being met. Your child’s symptoms will be assessed and a plan to best address each issue will be formulated. The goal of the Supportive Care team is to help your child feel the best they can so they can make the best of each day. In short, you can expect the best possible quality of life for your child.
Q. Will my insurance cover supportive care?
A. Most insurance plans cover palliative or supportive treatment, just as other hospital and medical services are covered. If costs concern you, a financial counselor can help with questions.
Q. Do I have to give up my child’s own doctor?
A. The Supportive Care team provides an extra layer of specialty care and works in partnership with your child’s other physicians. Your primary doctor will continue to direct your child’s care.
Q. Can my child have curative treatment together with supportive care?
A. Absolutely! Your child’s treatment choices are up to you and your child. A parent should never have to choose between supportive care focused on comfort and quality of life and curative therapies. Your child can get supportive care at the same time as curative treatment.
Q. Can our entire family benefit?
A. Most definitely! Family-centered care is a special focus of the Supportive Care team.
Q. Where does my child get Supportive Care?
A. The Supportive Care team will follow your child across care settings, from inpatient hospital stays to the outpatient clinic. If special challenges arise in caring for your child at home, homecare services may also be available.
Q. What is the difference between hospice and supportive/palliative care?
A. The words hospice and palliative care are often used together, but there is a big difference:
- Supportive/palliative care is for anyone facing a serious illness. You can have it at any stage of illness and you can have it right alongside curative treatment.
- Hospice care is enhanced palliative care that is provided to the most seriously ill children when their disease is progressing and the end of life may be approaching. It can be provided in any care setting but most frequently provides care in the home that allows children to stay in the setting that is most familiar to them.
The Supportive Care Team realizes that the burdens faced by families living in the shadow of a child’s serious illness can be great. It is our goal to help lighten the load and provide hope and guidance for your journey. Please call us for more information at 858-966-1700, ext. 228022.