Caring for a Pediatric Hospice Patient

For patients of every age, a hospice nurse needs to know how to prioritize, think critically and assess situations carefully. Providing emotional support and being an educator and advocate for the patient and family is also key. These are things that can be taught through studies and lessons.

One that is not taught in school is the ability to remain calm and strong for the family and patient. It’s not easy and it must be learned on the job.

When I was first assigned to work with a pediatric hospice patient, I was nervous. By the time I met the patient, the syndrome—which had been diagnosed at birth—had already had stolen what most adults would consider everything: He was blind and deaf. His body was flaccid and he required tube feedings. He vomited often, which caused aspiration from unable to swallow his own secretions. He required continuous oxygen and could only be held by his mother when his symptoms were under control.

Despite this, I know that he loves life and everything about it. He can grasp on to a finger. He can feel and respond to touch, which we know when his toes wiggle just a little bit.  He can even hold on to part of his stuffed giraffe’s ear.

Generally, I visit twice a week, but that can easily change, depending on the health of my patient. Sometimes I will visit daily and sometimes I will stay for six hours at a time to monitor his symptoms. With each visit I learn to experience joy, laughter, frustration, accomplishment and a challenge that cannot be put into words.

I believe that the most important thing is not to treat the parent like a medical provider, when really they’re just the parent. They need to be empowered to act like a parent. I will ease their fears by holding hands and providing support. We spend a lot of time talking about what is going on and I strive to always be HONEST with them about the circumstances.

Listening to a parent is the best resource to me as a medical provider. They know my patient and their child better than anyone else. When my pediatric patients’ mother offers assistance, I realized that had I gained her trust, a sign that I am doing a good job caring for her son.

Pediatric hospice patients wrap themselves around your heart and get into your head; it’s like no other feeling. When they are having a bad day, you will suffer. When they die, you will grieve. They remind us that we are all human. When you treat them with all the love and respect they deserve, you know you're giving the best care possible.  

Ginger Bundridge, RN/CM Crossroads Hospice Kansas City, MO

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