Hanna is a nurse practitioner at MUSC Children’s Hospital and a member of the pediatric palliative care team. Her husband, Adam, and his extended family own and run Budget Blinds of Charleston. The company is a supporter of MUSC Children’s Hospital and has donated more than $28,000 for pediatric palliative care.
What is a typical day like for you in palliative care?
It is difficult to describe a “typical” day, as our scope of work is incredibly broad. I am one of three providers on our team, the other two being physicians. One day we may be caring for a family whose child is actively dying, and the next day assisting with pain and symptom management, spending time at a bedside discussing the goals of the patient and family, dissecting medical language for the family to better understand a diagnosis or lab result. Or all of these conversations may happen on the same day.
The day may also include work with our CORAL (Children’s Organizational Resource Acknowledging Life & Loss) carts to create lasting mementos of painted handprints, fingerprints, or footprints on canvas; make memory stones with river rocks; or craft a special bookmark or journal. This allows the family to continue to create memories even though they are in the hospital. It is one of the best ways for me to spend a day. These memories and small mementos have such a positive impact on our families and will be with our families for a lifetime.
We also provide bereavement support to our families while they are here at the hospital, as well as once they have returned home. We may spend an entire day with one family at the bedside, or we may spend quite a bit of time talking with a bereaved family over the phone, or having several casual conversations with families catching up on their lives both in and out of the hospital. So much of our job is relationship building. This allows us to better meet the needs of our families, as we are able to take the time to sit down and more holistically get to know and care for them.
What is the biggest misconception about palliative care?
I believe that the biggest misconception about pediatric palliative care is that it is only appropriate at end of life, when all medical options have been exhausted. The role of palliative care is to improve quality of life for those at any stage of a serious illness. It can, and should, be provided along with cure or disease-focused medical care.
Budget Blinds has been a partner with MUSC Children’s Hospital for two years now. Can you share how this partnership began?
Budget Blinds of Charleston is a local and family-owned business, and we felt it was important to support the local community. Caring for children is difficult. Caring for sick children is even more difficult. We wanted to create a means of ensuring that supplies and resources were available for families facing the challenge of having a child in the hospital. We know the importance of having a strong medical team and medical facility to care for children, and we are incredibly grateful to have the Medical University of South Carolina in our city. The pediatric palliative care team provides a unique service that many children’s hospitals do not have. We felt that assisting this team in caring for this population of patients was an opportunity that could not be passed up.