Pediatric palliative care all about quality of life and this Northeastern grad is making children’s days ‘just a little bit better’ by Cyrus Moulton November 20, 2023 Share Mastodon Facebook LinkedIn Twitter Photo by Alyssa Stone/Northeastern University She shared “legit grandpa advice” in her speech at Northeastern University’s 2023 undergraduate commencement. Now Clara Wu is sharing the wisdom that she is learning from children who have serious medical conditions, as she spreads the word about the need for pediatric palliative care with the nonprofit National Center for Pediatric Palliative Care Homes. “I have this immense passion to support people in making their every day just a little bit better,” Wu says. “I want to make someone’s daily life just a little less painful and a little more fun. These homes do that not just for kids, but for their families.” Pediatric palliative care is specialized medical care for children with serious illness, and is meant to enhance a person’s treatment by focusing on quality of life for them and their family. “It’s focused on the question of ‘what do you want your quality of life to be,’ rather than ‘how can we cure you,’” Wu explains. Wu says she first became interested in this type of specialized care while on co-op at the George Mark Children’s House, a palliative care home for children in San Leandro, California. The home specializes in respite care — or providing care when the primary caregiver needs a break — and end-of-life care in a home-like setting. It was a unique co-op. There are only five such homes in the United States, Wu says. “People don’t know what palliative care is, what respite homes are, which is understandable — it doesn’t get a lot of attention,” Wu says. But that is where the National Center for Pediatric Palliative Care Homes (NCPPCH) and its Children’s Respite Homes of America program comes in. “We’re trying to make it more feasible to build the type of homes like I worked at for co-op,” Wu says. “Not only are we a collective voice for families (undergoing pediatric palliative care), but a guiding organization on how to develop new homes.” The nonprofit is new. In fact, when Wu first inquired about volunteering for a pediatric palliative care advocacy organization a year ago, the group was still forming. But Wu was persistent, and she was asked to produce a video for the organization’s kick-off meeting this fall. Now she works part time for a consultant helping NCPPCH organize and spread its message. Wu says the work is needed. She explains that there are about 1 million medically fragile children in America who need constant specialized care for a chronic debilitating condition or conditions. I have this immense passion to support people in making their every day just a little bit better. I want to make someone’s daily life just a little less painful and a little more fun. Clara Wu, a Northeastern graduate Furthermore, there are millions of children with medical complexity, meaning they have two or more concurrent chronic conditions that require ongoing medical attention or limit activities of daily living. These numbers are also expected to grow. Medical advancements such as breathing machines, anti-seizure medications and feeding tubes have extended the lifespans of children with many conditions, Wu says. But the U.S. health care system is “in many ways made for adults with long-term, chronic illnesses” rather than children, Wu says, and the complexity of Medicaid reimbursement and licensing means that the palliative care homes in the U.S. depend primarily on charitable donations. “It’s wonderful that people donate,” Wu says. “But it’s such a rare issue that the people who donate are the ones who are affected by it.” So, NCPPCH is raising awareness and educating people about the need for pediatric palliative care homes, as well as trying to change the policies around funding the homes. “Clara has taken her firsthand experience and knowledge as a volunteer directly helping children at one of just five pediatric palliative care and respite homes in the U.S. to step up and broadcast the message nationally of the crucial need to have hundreds of these homes serving medically fragile children and families in communities all across America,” says Jonathan Cottor, CEO of the NCPPCH. Wu is excited to be involved in spreading the message. She is primarily working in the communications and marketing area, making presentations, writing fundraising pitches and speeches, and more. “If they have a chance to speak to Congress or to state legislatures about changing the way to fund facilities, I hope to be the person to do that speaking,” Wu said. Meanwhile, Wu is working three other part-time jobs: She is a baby cuddler for infants with opioid withdrawal and a newborn hearing screener at Brigham and Women’s Hospital; a clinic case manager for Boston Healthcare for the Homeless; and a volunteer patient for Northeastern EMS and pharmacy students. She is also applying to medical school. “I don’t feel like I am trying to do anything unusual,” Wu says. “I generally gravitate towards wanting to relieve suffering in any way I can.” Cyrus Moulton is a Northeastern Global News reporter. Email him at firstname.lastname@example.org. Follow him on X/Twitter @MoultonCyrus.