Amy Haskamp has learned a lot from the kids in her care. The pediatric clinical nurse specialist with Riley Hospital for Children’s palliative care team has learned how to be open and honest and, most of all, how to live life.
“I’ve learned that tomorrow is never promised; you may still be breathing, but life as you know it today may not be the same tomorrow.”
It’s a hard job – helping young people adjust to a life-threatening, life-limiting illness. But Haskamp is exceptionally good at it. So good, in fact, she recently was named the Certified Hospice and Palliative Pediatric Nurse of the Year. She will receive her award in March at the American Academy of Hospital and Palliative Care conference in Orlando.
Haskamp was a pediatric oncology nurse for 16 years, much of that time at IU Health North Hospital before coming to Riley to help start its palliative care program.
“I was practicing palliative care long before I even knew what the word meant,” she said. “I always focused on quality of life for patients, making sure their lives were as good as they could be.”
Unfortunately, she said, “I watched a lot of kids not live well and not die well, and I knew there had to be a better way. I can’t remove the devastation of losing a child, but I can make it a little less stressful, a little less painful.”
How does she do that? By listening to her patients and to their parents, hearing what they want, what they need during such a difficult time. These can be tough conversations, depending on the child’s age and illness.
An improved quality of life looks different for every patient, she said. Some are able to go to school, some have machines that help them breathe. Both deserve quality of life, both deserve to live life as a child as much as they possibly can, Haskamp said. That is sometimes achieved through symptom management; sometimes it means helping a family navigate the medical system to minimize time spent in the hospital.
The job of the palliative care team is not to convince families or patients to make a decision one way or the other, she said. “We’re there to help them process and think about what makes sense in their lives. What can we help fix right now?
“Just yesterday, we got a child home, albeit two hours before he died, but we got him home, and that was their goal. I couldn’t change what was happening, but I feel good that we got him home. That’s where you find the joy. That’s what drives each of us.”
While there’s a degree of sadness associated with each case, Haskamp said that for as many days as she might cry over a patient’s death, “I feel like I would cry more if I couldn’t do this work.”
Haskamp is one of two advanced practice nurses on the Riley palliative care team, which also includes two physicians, a social worker, a chaplain intern and an administrative assistant. They work out of offices in the old NICU at Riley.
Amy Hatton is a fellow nurse on the team. She and Haskamp worked at North Hospital together and had a similar approach to end-of-life care. When Hatton learned her friend was helping to launch a pediatric palliative care department at Riley, she was intrigued.
“I watched her develop this and pour her heart and crazy amount of knowledge and drive to make sure children get this kind of care and to making this department what it is,” Hatton said. “It’s been fantastic to watch.”
It’s not just Riley where Haskamp shares her expertise. She teaches classes worldwide on the topic with the End of Life Nursing Education Consortium.
“She has had a focus and a drive to make sure that we can deliver this kind of care and then educate others about it,” Hatton said of her colleague, whom she considers a mentor.
Haskamp recognizes the danger of burnout from a job that can take an emotional toll. She practices self-care, she said, which often includes travel. It’s a rule of hers that she doesn’t finish a vacation before she has the next one planned. She’s been to Australia, New Zealand, China and Hungary, and every January, she and her husband recharge in Jamaica.
“I truly believe I have been led to do this work, so I keep listening and I keep doing it. I hope I can always do well by my families and my patients.”
--By Maureen Gilmer, IU Health senior journalist