Children’s Hospice & Palliative Care

Children with advanced illnesses surprise us every day, and their needs can change rapidly. We offer a full spectrum of care, starting with pediatric palliative care, given when a child has an unknown prognosis. Some children improve and “graduate,” while others transition to hospice services. 

Palliative care is designed for children with an advanced illness who are receiving disease-directed treatments and whose prognosis is expected to be more than one year. Our palliative care approach consists of a Pediatric Palliative Care Provider visit to manage symptoms and coordinate care with your child’s outside providers. Our pediatric Social Workers make occasional visits for support and connection to outside resources. 

Children in our palliative care service may transition to our hospice service if your family and medical team decide that this is the most appropriate course based on the trajectory of your child’s illness. 

Our hospice service is intended for children whose life expectancy is six months or less, even while your child continues to receive disease-directed treatment. Hospice service includes comprehensive support from our interdisciplinary team, including a Physician, Pediatric Nurse, Social Worker, Chaplain, and Nurse Aide. Your child’s dedicated pediatric nurse will visit at least once every two weeks to meet your child’s needs. Additional team members visit based on the goals you’ve set for your child and the understanding of your needs. 

Please contact Allison Kuchar, our Executive Director of Children’s Programs, at akuchar@capitalcaring.org or 703-213-7902.

We believe that all treatments and medications your child is currently receiving should continue if they fit within your goals of care for your child while on our service. This is called Concurrent Care, and it means that everything you are currently doing to keep your child well can continue while you have our added layer of supportive services from us at home. 

With the adoption of the ‘concurrent care’ legislation under the Affordable Care Act in 2010, parents are no longer required to forego curative or life-prolonging treatments for their children to be eligible for hospice benefits. Now, state Medicaid programs, followed by most other commercial insurers, enable access to curative treatments and the full scope of hospice benefits. 

Your child can continue any current treatment or medications, and they are welcome to begin new treatments and medications even while receiving palliative care or hospice care. 

Your infant, child, teen or young adult may be ready for Capital Caring Kids hospice if they have been diagnosed with a life-limiting illness even if they are continuing to receive curative treatment. If you, your child or your child’s doctor feel that this is the right time for supportive services at home, you can request a free evaluation by calling 703-213-7902. Many families are relieved to experience the support we can offer – often earlier than expected. 

Our care takes place in your child’s home. Many families with critically ill children have several appointments to go to and other family needs to meet. One of the benefits of hospice is that we come to you around your schedule. However, if your child’s needs cannot be managed in the home setting, we offer temporary symptom management at one of our inpatient units. 

Our pediatric team is committed to working around your schedule and will be available for evening and weekend visits if needed. Our visit schedule is based on your child’s plan of care, and we adjust it based on the ever-changing needs of your child and family.

Yes. Capital Caring Kids is committed to providing support for families who have learned that their unborn child has a life-limiting illness. In addition to connecting our pediatrician with your obstetrician and specialists for birth planning, we can offer emotional and spiritual support. When your child is born, we will help you adjust to your child’s condition, continue to provide care for your newborn, and support you and your family no matter how long your child is with us.

Benefits are paid by your child’s insurance on a per diem basis and include all visits and services. As a not-for-profit provider of services, Capital Caring Kids is committed to caring for all who need our services. In most cases, Medicaid or private insurers will cover the cost of care with small contractual co-payments as outlined in your plan. If you have insufficient funds or no payer source, our Pediatric Patient Care Fund may be able to provide financial assistance based on your financial status.

When your child is referred to our program, our financial case managers will verify your child’s hospice benefit, and our team will assist you in making arrangements where necessary.

We serve all families within our diverse community, and no one is turned away due to their inability to pay. Our Pediatric Care Fund ensures that every child and family has access to our compassionate hospice care.

Palliative care is an appropriate intervention at any stage of a child’s illness. A child diagnosed with a chronic, progressive disease experiencing pain or other symptoms that impact quality of life will qualify.

A child diagnosed with a chronic, progressive illness may be eligible for hospice if any of the following are present:

• Multiple trips to the doctors/ER/hospitalizations
• Lack of response to treatment and/or worsening symptoms/disease
• Treatment is having a negative impact on quality of life
• Unintended weight loss
• Decrease in cognitive abilities
• Patient/family desires “comfort care”

Here are the questions to ask:

• Does your child suffer from pain, trouble breathing or other symptoms due to a serious ongoing illness?
• Do you need help understanding and coping with your child’s disease and diagnosis?
• Do you need help clarifying treatment goals and options?
• Do you need assistance in making medical decisions?
• Do you need help coordinating your child’s care?

If you’ve answered “yes” to most of these questions, it may be time for you to ask your child’s physician to write you a referral for a palliative care consult. You may call 800-869-2136 or click here for assistance with the referral or to ask questions.