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What is Pediatric Hospice and Palliative Care?

by | Mar 26, 2024

The Difference Between Adult and Pediatric Hospice and Palliative Care

Pediatric hospice and palliative care are like running a marathon rather than a sprint. Children’s bodies are resilient and they change quickly. So, the “finish line” isn’t always clear. When someone of advanced age enters hospice or palliative care, they are often ready to transition their focus from curative treatment to comfort and symptom management as their life draws to a close. Children, however, may continue to receive treatment while enrolled in hospice or palliative care because of the uncertainty regarding the longevity of their care: “We partner with patients and families on this long distance run to help navigate treatment options and symptom management that might be very different from adult treatment and symptom management options,” explains Four Seasons Provider, Krista Blanton.

Because of this, “getting to know the child and their family early, building that trust, and walking alongside them as needs change and grow is [another] of the biggest differences between pediatric and adult hospice and palliative care,” says Four Seasons Physician and Pediatric Hospice Specialist, Dr. Michael Barnett. Staying involved with the providers the family already knows and trusts is a critical aspect of pediatric hospice and palliative care. As a hospice and palliative care provider, our goal is not to replace the providers already involved in a child’s care, but rather to come alongside the family to build an extra layer of support, expertise, and specialized symptom management.

Why does Western North Carolina need specialized pediatric hospice and palliative care?

Although Four Seasons has always been available to serve pediatric patients, the reality of pediatric serious illness is that many of these children have to stay in a hospital away from home. Many must travel to hospital systems that provide specialized pediatric care as far as Raleigh, Winston-Salem, or South Carolina to receive the treatment they need. This means they spend a lot of time away from their family, friends, and other loved ones, isolating them from their support network and their home. Traveling this frequently or moving to another city while receiving care is complex, stressful, and sometimes is not an affordable option for families.

At Four Seasons, we understand the stress and complexity of moving an ill child so frequently. By offering specialized pediatric care, Four Seasons can meet these unique needs wherever a child calls home: “If we can save a child and their family from even one visit to the ER, we’ve saved them the hassle of transportation to hospitals several hours away and the stress of travelling such long distances with a sick child. This allows the patient to continue resting in an environment where they are most comfortable and the family to spend quality time together,” says Dr. Barnett.

Four Seasons is (as of March 2024) the only nonprofit provider offering specialized pediatric hospice and palliative care in Western North Carolina.

What do we need?

The most difficult thing to obtain is equipment that is specifically tailored for the needs of seriously ill pediatric patients. Children grow very quickly, meaning that they outgrow the equipment needed to treat their condition and/or manage their symptoms. And, although insurance and Medicare or Medicaid cover some of these needs, they often only cover some types of equipment or will only cover one piece of equipment within a specified time range. For example, if a patient is approved for a wheelchair, they may not be approved for another piece of equipment (such as a bed, activity chair, etc.) until a specified amount of time has passed, even if the patient would benefit. “Sometimes it can be as simple as providing a $45 shower chair to assist a patient with bathing. It could be as complex as providing different sized feeding tubes as a child in need of one continues to grow,” explains Four Seasons Chief Clinical Operations Officer, Rikki Hooper.

The other greatest need we have to provide this specialized care is proper, quality training for our staff. While some care procedures for pediatric patients might be routine in a hospital, they become more challenging in a home setting, especially in rural areas. It is important that each of our pediatric care staff members is trained in troubleshooting equipment problems on-site. It is also important that staff is trained for the emotional challenges they may face when providing care for a pediatric patient. Four Seasons understands the grief process and our staff must be adequately prepared to walk this emotional and physical journey with patients and families.

How Can You Help

Four Seasons recognizes the immense need for these services in Western North Carolina and we are honored to have Pediatric Palliative & Hospice Care specialist, Dr. Michael Barnett, to help lead this program. As we look to grow this program and improve the quality of life for these children and their families, we are asking for community support to help us fund equipment, training for staff, and care funds that allow us to care for anyone in need, even if they are unable to pay. We are grateful for your support.