Giving: Pediatric Palliative Care

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As you may recall, I used to be a pediatric hospice nurse and social worker. What does that mean, exactly? Well, it means that I cared for children and their families facing a potentially life-threatening illness.

Many people ask: How (many times with an f-bomb expletive thrown in) on earth could you do that?  My response was/is always the same: though it is incredibly challenging work, it was the most meaningful and powerful work I have ever done. There is no greater honor than caring for a child and family during the most challenging time in their life.

While doing this work, I had the most amazing opportunity to meet and collaborate with Dr. Sarah Friebert, the Medical Director at The Haslinger Pediatric Palliative Care Center at Akron Children’s Hospital. Dr. Friebert is an incredible person, an angel really. She has received all kinds of awards but she wouldn’t want me to tell you about that. She would want me to tell you about pediatric palliative care. So, I will.

The Haslinger Pediatric Palliative Care Center team cares for patients of all ages (prenatal to adult) with complex, chronic or life-threatening childhood diagnosis. Their goal is to offer palliative care with other treatment options. Treatment includes care from time of diagnosis of a life-threatening or chronic illness through death and bereavement, if that occurs. They strive to make the best out of worst-case scenarios, while integrating with the family’s primary care team to complement services already being provided.

In the “A Palette of Care Program,” patients and families are given a canvas, brushes and paints with which to paint a life of quality, free of suffering. The colors on the painter’s palette represent all the different disciplines or specialties of caregivers on the palliative care team. Each child and family can pick and choose the colors they need or want to create the most beautiful painting possible of life and hope. How is this for a Silver Lining? I mean, really. Amazing.

In 2011, this program cared for 1459 children and families. This is an extraordinary number. Providing this care can be expensive, especially when families need extra resources like utility patents or rent in a crisis as well as money for some funeral expenses. Philanthropic support is what enables the program to have funding available for families needing these extra resources (which is why this is in the “Giving” category today!).

On Friday, July 27, the Haslinger Family Pediatric Palliative Care Center will celebrate its 10th birthday! As part of the celebration, they are having a blowout party with high hopes of raising some much needed funds to help support the program.

Dr. Friebert generously agreed to answer some questions about how she came to do pediatric palliative care and The Haslinger Pediatric Palliative Care Center.

If you live near Akron, I hope that you can and will attend the birthday party! Admission is only $5 and includes heavy appetizers, dessert and entertainment. Tickets are available by calling 330-543-8340. Sponsorship packages are also available.  For more information, visit www.akronchildrens.org/birthdayparty.  You don’t have to attend to support the program, though (Silver Lining).

You may connect with The Haslinger Pediatric Palliative Care Center:

Thank you to Dr. Friebert and her team for all that you do for children and their families!

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Comments

  1. says

    Thank God for you, the doctors and nurses, and caregivers that do this challenging work and love it. Also for posting the great interview between yourself and Dr. Friebert on understanding palliative care.

  2. E.B. says

    Hollye, thank you for this post. Being an artist, I love the "Palette of Care" concept, it is BRILLIANT. Having lost loved ones to FBC and FC, I know how much a strong support group means to everyone involved. Will be contacting this organization. Thank you so much and keep up the good work!