Palliative care is a specialty people are familiar with in the adult world, but people aren’t as aware that pediatric palliative care is also an important health care service available for children. Pediatric palliative care…
Palliative care is a specialty people are familiar with in the adult world, but people aren’t as aware that pediatric palliative care is also an important health care service available for children. Pediatric palliative care teams are a multidisciplinary group of specialists who care for children and families when a serious illness is diagnosed. Sometimes there are life-threatening events like a new cancer diagnosis or a life-changing event like a severe car accident. In both situations families require support that addresses their physical, spiritual, emotional and social needs. Palliative care teams work alongside medical teams to ensure that every child and their family receive comprehensive support.
Pediatric palliative care teams consist of physicians who are board certified in hospice and palliative medicine. They provide treatment for pain, anxiety, depression, fatigue and constipation. They help families set goals for care and assist them with complex medical decisions. Social workers are also important team members, they link families and patients to community resources to help with financial, work and school concerns. They often provide counseling and host support groups. Child life specialists help prepare children for procedures with age appropriate descriptions and use play to alleviate stress. Creative arts therapists provide non-verbal exploration of emotions through art and music; integrative therapists help with stress reduction, pain relief and relaxation through the use of acupuncture, acupressure, Reiki, massage and hypnosis. Psychologists meet with children and families to provide counseling allowing them to express their emotions and learn new coping skills, and chaplains provide spiritual support for all faiths and often reach out when a person has died to provide support.
To better explain how pediatric palliative care teams support families in the most challenging of times, I will share the stories of patients and their families whose lives we have touched.
Meet Allie, a 17 year old receiving treatment for Ewing’s sarcoma, a type of cancer. A social worker meets with Allie to help her figure out how to complete her high school degree online and on time while receiving cancer treatment. A psychologist helps Allie talk through the emotions involved with a cancer diagnosis at the end of high school. A physician meets with her regularly to address her pain and fatigue.
Meet Michael, an 18 year old who has Duchene’s muscular dystrophy, a life-limiting illness. The team meets with Michael and his neuromuscular specialists to help him make independent medical decisions and voice his care choices. He appreciates routine chats with the chaplain and has found time with the art therapist helpful in dealing with his loss of physical ability over time.
Meet Aicha, a 12 year old who has dilated cardiomyopathy and is waiting for a heart transplant. Our team met her and her family when they came for a pre-transplant evaluation to ensure that they understood all the care options shared by the cardiology and surgical teams. Once Aicha was placed on the transplant list, a child life specialist started meeting with her routinely. They help prepare her for medical procedures, like receiving her new heart, using play and explanations that are just right for her.
Meet Lydia, an 11 year who has relapsed rhabdomyosarcoma, a cancer. Lydia received surgery, chemotherapy and radiation; however, the tumor continued to grow. A physician has been caring for Lydia, helping to ease her pain. Lydia and her family decided they wanted all of her care to be at home in her final months of life. Together, we partnered with a community hospice team and helped Lydia live her best life surrounded by her family and pets until her last breath.
Meet Tamara, a 32-year-old mother of three who is pregnant with her fourth child. During a routine prenatal ultrasound, her unborn child was diagnosed with a serious congenital heart condition, hypoplastic left heart syndrome. A physician meets with Tamara before delivery to help her set goals for the care of her child in light of her family values and beliefs. After delivery, the psychologist will be there to provide emotional support, and the social worker will connect the family to community resources.
Meet Xavier, a 7-year-old boy who was born with cerebral palsy. He moves with the help of a wheelchair and is fed by hand. The physician met with his parents when he was admitted to the intensive care unit three times in six months for pneumonia to discuss if a feeding tube would be helpful to Xavier. Xavier enjoyed visits from the integrative therapist, especially massage therapy.
Meet Maria, a 3 week old who was born at just 24 weeks. As a premature baby, every underdeveloped organ is at risk. She has needed to be on a machine to assist with her breathing since birth. A physician and chaplain meet with her family to listen and help them make big decisions along with their neonatologists that will shape Maria’s future.
Meet Daquan, a 9 year old who has sickle cell disease and is admitted to the hospital to have a bone marrow transplant. This transplant will allow him to become free of sickle cell. His bone marrow donor is going to be his brother. Our Child Life Specialist meets with Daquan and his brother, helping them to get ready for a long hospital separation. Together they develop strategies for virtual visits. Our physician meets with Daquan and his family to understand his previous experience of pain related to his sickle cell disease and develop a plan to keep him as pain free as possible during transplant.
At the Children’s Hospital at Montefiore, we call our palliative care team the Quality in Life Team. We are dedicated to helping each child live their best day, every day. Families confronting serious illness need a team to help ease the physical, social, emotional and spiritual stresses. We treat children in the hospital, clinic and home settings. In times of uncertainty we make sure these children and families are never alone.
From the moment a child is diagnosed with a condition that threatens or limits their life, the pediatric palliative care team works alongside the primary medical team throughout the child’s care. Not only does the team help the child, but we understand that serious illness can affect the whole family and the community of people surrounding that child.
In times of stress, navigating the health care system can be overwhelming. Knowing there is a team of experts ready to join in the care of your child and family can make each day a little easier. It’s about focusing on the quality in life for every child, every day.