Here at Akron Children’s Haslinger Family Pediatric Palliative Care Center, we are celebrating National Hospice and Palliative Care Month during November. This is a great opportunity to share information about pediatric palliative care and our program here at Akron Children’s Hospital.
What is palliative care?
Many people are not sure what palliative care is, or may not be sure of the difference between palliative care and hospice. Palliative care is for patients with life-threatening or chronic and complex illness. Anyone, regardless of life expectancy, can receive palliative care services. It is not necessary to abandon curative treatments to receive the services palliative care has to offer.
Generally, hospice provides care to patients who can no longer benefit from curative medical treatment and are most likely starting the final stages of their illness. Many patients receive palliative care and hospice care at the same time, depending on the services they need.
How does palliative care get involved at Akron Children’s Hospital?
When a family receives a life-threatening diagnosis for their child, one of the child’s providers may recommend a referral to palliative care. A referral to palliative care can come from anyone involved with the child: a medical provider, a local agency, a therapist, or even at the request of a parent or family member.
What does palliative care offer at Akron Children’s Hospital?
Once palliative care is involved, we work with the patient’s other providers to give the patient the best care possible. In addition to treating the patient’s pain and symptoms, the pediatric palliative care team helps with communication among all of the patient’s providers, as well as care coordination, helping with scheduling appointments and getting things like home nursing, supplies and medications. We also offer emotional, spiritual and financial support to the patient and family, if that is needed.
Often palliative care patients are seeing many different specialists and providers. Parents can be confused by all the information they are receiving, especially when there are difficult decisions that must be made. Since the palliative care team communicates with all the patient’s providers, we have the whole picture, and can help go through information parents have received. Most importantly, we offer support in making decisions, so parents can feel like they have done what is best for their child, weighing all the options and their outcomes.
Who provides palliative care at Akron Children’s Hospital?
The pediatric palliative care team is made up of more than 20 core and ancillary team members, including physicians, nurse practitioners, nurse case manager, social workers, chaplains, psychologist, physical and occupational therapists, dietitian, massage therapist, child life specialists and expressive therapists (art and music therapy). Of course not all patients will need to see all of the specialized team members, but they are available to patients if needed.
Who are palliative care patients at Akron Children’s Hospital?
In our palliative care program, we see patients of all ages with many different diagnoses. In addition to seeing infants, children and teens, we have some patients who aren’t even born yet. Their parents have received a diagnosis in the womb, which may be life-threatening or life-limiting upon the baby’s birth, and we can help provide support and a plan for when the baby is born.
We also see adult patients who have life-long illnesses, such as cystic fibrosis or muscular dystrophy, which make their care very complex and their health more fragile. Not all of our patients have cancer. In 2010, only 15% of our patients had cancer. We see patients with neurological, genetic, heart, pulmonary/lung disorders and diseases, as well as patients with sudden traumas or burns, and many other diagnoses.
Do all pediatric palliative care patients die from their disease?
Many people think that palliative care is only appropriate for patients who are dying or will die soon. In fact, most of our pediatric palliative care patients are still living. Some receive effective treatments for their diseases and no longer need palliative care. Some continue to live with life-limiting illnesses, and have perhaps overcome a secondary illness that gets better, or become healthy enough they no longer need palliative care services.
Unfortunately, some of our patients do die from their diseases or injuries, which is of course heartbreaking for everyone involved. The pediatric palliative care team continues to offer support as long as the family needs it, even after their child has died. These services are available to any family that has lost a patient at Akron Children’s Hospital, not just palliative care patients.
We have a bereavement coordinator who can offer counseling or refer families for further counseling. We provide support groups and programs for children and adults, as well as an annual remembrance service at the holidays, which is open for anyone to attend.
To learn more about pediatric palliative care and the Haslinger Family Pediatric Palliative Care Center, visit us at www.akronchildrens.org/palliativecare. You can also find us on Facebook and Twitter.