When we met Ae Ran Hwang, a visiting nurse and family counselor from a pediatric palliative care program in Seoul, South Korea, I was reminded of Shakespeare’s words, “Though she be but little, she is fierce.”
At 4 ft., 8 in., Ae Ran is diminutive in stature but a force of energy, compassion and wisdom. We were privileged to sit down and talk with her about the practice of pediatric hospice and palliative care in South Korea, including the challenges unique to her culture and the challenges we share across cultures.
Ae Ran was a respected professor of nursing for 20 years with a particular interest in hospice and palliative care. She obtained a counseling degree in 1999 and began working for a hospice group as a counselor. Hospice and palliative care were relatively unknown fields in South Korea, so Ae Ran searched for more education.
Specifically, she wanted to investigate the well-established systems in the U.S. In 2010 she found what she was looking for in Dr. Sarah Friebert, director of the Haslinger Family Pediatric Palliative Care Center at Akron Children’s Hospital. Via an internet search, Ae Ran found a video of Dr. Friebert giving a talk.
“She touched my heart so deeply with her compassion,” Ae Ran said.
She wrote Dr. Friebert a letter and asked to come for a visit. She spent a month in Akron learning from our team, and remembers this visit to be a real turning point: she was able to freely ask questions, observe, and be fully integrated into the team. As a result, she could visualize the potential for her own program back home.
Ae Ran wanted to return the favor of her visit, and in 2011, Dr. Friebert and Marlene Hardy-Gomez, a nurse practitioner from the Haslinger center, were honored guests in South Korea. They presented at the first-ever pediatric palliative care conference in South Korea, and were given were treated like VIPs by Ae Ran and her colleagues.
The visit was quite successful and brought additional education and exposure to pediatric healthcare providers in South Korea.
Ae Ran returned to Akron and the Haslinger center in August to continue her education with our team. In South Korea, she runs a group which includes 3 doctors, a part-time play therapist and part-time art therapist. Her group is part of Severance Hospital in Seoul, South Korea, and is affiliated with Yon Sei University.
They remain the only pediatric palliative care program in the country. Ae Ran hopes to continue growing the program and expanding services to other parts of South Korea. We were anxious to ask her about similarities and differences she sees in pediatric hospice and palliative care between our 2 countries.
Ae Ran shared that the culture in South Korea places emphasis on family, and caring for children, above all else. Children are seen as property to protect and parents see themselves “as one” with their child. The term “property” may sound negative, but they consider that the child is property in the same way a parent’s own heart or lungs are property. Additionally, parents tend to protect their children from the truth and do not believe in discussing prognosis or even involving older children and adolescents in their plan of care.
Parents tend to value survival as most important, so the concept of palliative care can be difficult to accept. Parents acknowledge and support a sense of false hope because they consider it cruel to take away hope. Ae Ran’s compromise is to allow some treatment during the end-of-life journey. For example, children may receive low-dose chemotherapy up until their death so the family feels they have not given up all hope.
Shamanism is the oldest belief system in South Korea and is considered the root of their culture. In Shamanism, the death of a child goes directly against nature and brings a stigma to the parents and the extended family as a whole.
The ghost of that child may not be entitled entrance to heaven. There is a Shamanistic ritual to create a “good death” and allow a road to heaven for that child, but it takes 8 hours and is thus often not feasible for a family to follow. As a solution, Ae Ran has created a shorter “good-bye ritual ceremony” to help lead families and patients through the dying process and ensure entrance to heaven. She has found this to be both accepted by and comforting to families.
South Korea also has a rich history of Christianity, Buddhism, and Confucianism. Families may also have a faith which includes aspects of several religions or belief systems. This can further complicate Ae Ran’s work, but is not unlike the cultural and religious differences and beliefs we encounter in the U.S.
Ae Ran’s current goals are to expand her ability to provide compassionate hospice and palliative care to all children and their families in South Korea. She wants each patient and family to grow “more mature after their illness” and achieve peace with the process. We certainly believe this tiny but powerful woman can do anything she sets her mind to achieve. She inspires us all to continue tirelessly, enthusiastically, and with endless grace.