Evolving Philosophies on Pediatric Hospice and Pain Management

There’s a “how-to” guide for about everything these days, but for families and caregivers of our country’s estimated one million seriously ill children, there is no guidebook that addresses the complexities and emotional challenges of decision making for children suffering in pain as a result of a serious or life-threatening illness.

“At times, parents and clinicians alike feel fearful when it comes to dosing opioids to our youngest patients,” said Dr. Glen Komatsu, pediatrician, palliative care physician and medical director of Providence TrinityCare in Torrance, CA.  

“However, that doesn’t negate the need to do so, as many pediatric patients suffer in tremendous pain. Often people erroneously fear that the morphine and methadone we are properly prescribing will kill the child,” said Komatsu. “That fear is not based upon fact,” he said.  

• What causes this reticence? A preponderance of myths and a lack of education on the topic, Komatsu feels.
• His explanation of the myths include:
• Addiction (Addiction is different than dependence.)
• Opioids are “too strong” for children (“Untrue,” proclaims Komatsu.)
• Morphine will cause the child to die. (“When properly prescribed, opioids are not the cause of the child’s death,” Komatsu feels.)
• Increased drowsiness will persist and the child will “sleep for the rest of his or her life” (Sometimes a patient may initially feel drowsy when first administered the morphine or methadone, but this usually goes away.)

“Parents are the decision-makers for their seriously ill children and if all they hear are the potential negative side effects of any medication, they may resist administration in their child,” said Komatsu. “However, if parents also hear that a pain-free child may be able to participate in family activities or lead a more normal life, they are more likely to agree to a protocol that is appropriately prescribed for that child. We need to be more mindful of our communication and focus on the positive effects of medications as well.”

The issues also lie far outside the boundaries of the home or hospital.   

“I’ve experienced community pharmacies instilling fear in family members of patients because of their own lack of education on the topic of opioid use in pediatric palliative care,” said Komatsu.

Insurance companies have limited access to medications because they are not understanding of the prescribed dosage for pediatric hospice and palliative care patients,” he said.

All is far from lost however.  By forming collaborations with family caregivers and industry professionals as partners in care, everyone benefits.

Hospice pharmacy companies are a valuable part of the “resource team” for our country’s youngest patients, Komatsu shared.

“It’s important to recognize that pediatric patients have specific needs that change often, regardless of diagnosis, ” said Kevin Kirkland, President, Eastern Division, OnePoint Patient Care. “They are not little adults, which is why we (and other specialty pharmacies) have staff specifically trained in pediatric pharmacy-- on call 24 hours a day, seven days a week.”

“Every child deserves to be as pain free as possible. It’s a basic human right and we all need to do our part to ensure that happens, even if we can’t necessarily alter the course of the disease,” Kirkland reflected. And isn’t that what we would request for ourselves and should demand for all children?