The Beginning and Future of Pediatric Hospice Care-Enabling and Perpetuating Love

Hospice care is not limited to adults. Although the number of people needing children's hospice is currently in the minority, the unique physical, mental, and spiritual needs between children and adults require a comprehensive approach to children’s end-of-life care. This includes tailored planning for pediatric patients as well as extended support for their families. Over the years, Dr. Frank Leigh Lu has persistently advocated for Taiwan’s medical field to acknowledge the importance of pediatric hospice care. He has even drawn inspiration from international practices, in the hope that one day the gaps in pediatric hospice care can be bridged and fulfilled.

According to statistics, approximately one percent of all deaths, or about 1500 cases, in Taiwan each year are among children under the age of 18; this is the impact of the low birth rate. Even though the proportion of child fatalities is low, the impact on families and even the siblings may be significantly greater than can be imagined.

Dr. Frank Leigh Lu, Director of the Department of Pediatric Pulmonary and Critical Care Medicine at National Taiwan University Children’s Hospital, recognizes the need for pediatric hospice care from the forefront. As early as 2012, he not only set up the Children's Hospice and Palliative Care Integration Team at NTU Children’s Hospital, which demonstrated his commitment to addressing this need; but he further dedicated himself to organizing relevant seminars and exchanging information with the international community, with the aim of enhancing the recognition and importance of children's hospice care in both Taiwan and on a global scale.

A Divide between Worlds Unveils the Gateway to Exploring Pediatric Hospice Care

"Why are you not God?!” Even after all these years, these words occasionally ring in Dr. Frank Leigh Lu’s ears, reminding him of a tragedy that tore a patient's family apart.

He was in his third year as an attending physician in the pediatric intensive care unit, and despite his enthusiasm, he repeatedly encountered and came to terms with the arrival of death. Some children, even with aggressive treatment, could not escape the grasp of death, like the child who, in the prime of his youth, succumbed to a sepsis so severe that even the ECMO failed to be effective. He watched over that child, yearning for a miracle, but this time God chose to remain silent.

"In the end, we switched off the ECMO, and he was pronounced dead shortly afterward," Dr. Lu recalls. This incident is not an uncommon occurrence in pediatric intensive care units, yet the grief it caused was too overwhelming for the family to bear. To Dr. Lu’s surprise, a year later, he received a notice from the hospital that the father had chosen to file a lawsuit against him.

Before the lawsuit could be filed, a mediation session had to be held at the local health department, and it became a scene that Dr. Lu would never forget.

The grieving father, accompanied by his lawyer, sat down opposite Dr. Lu. When the chairman asked the father to present his thoughts and opinions, the father pounded the table with his fist in anger and frustration, and stood up with his accusing finger pointing dangerously close to Dr. Lu's nose. He yelled in a near-hysterical manner, "Why are you not God?!”

This meeting ultimately ended with the chairman’s dismissal of the lawsuit, but in Dr. Lu's heart there was a heavy weight like a huge stone. Three years later, when he crossed paths with this father on the street, the young man had a sad face and empty eyes, walking along the road as if he were a wandering spirit. Dr. Lu mustered up the courage to initiate a conversation with him, only to learn that the father, because of the child's death, had never been able to let go of his pain and guilt in losing his child. He struggled to concentrate on his work, his family life grew strained, and tragically, in some cases, the issue of hospice care may lead to the dissolution of marriages, which is very saddening.

In the face of these devastating events for the patient's family, Dr. Lu could only tell him what kind of psychological support services were available at the hospital, but he could do nothing more. He never saw the father again, however, the incident did not end there. Instead, it stirred something in Dr. Lu's heart.

"Despite hospice development in Taiwan spanning many years, there's relatively limited care for children. Even though the child mortality rate in Taiwan is only one percent of all annual deaths, the impact on the whole family is profound," he reflects. Being at the forefront, the daily reminders prompt Dr. Lu to contemplate: "What can we do besides lament? We should take action!”

Establishing a Care Team for the Official Implementation of Pediatric Hospice

According to Dr. Lu, "The loss of a child is a devastating blow to the entire family, and hospice care cannot stop at the hospitalization alone; it must continue to provide support and counseling to them even after the patient's death." In a bid to gain a deeper understanding of pediatric hospice care, Dr. Lu pursued further studies in Boston from 2003 to 2005. He explains, "When I returned to Taiwan, I wanted to create a child-friendly health care team that would include not only the child’s care, but also provision of support for the child and the family."

This aspiration was finally realized in early 2012. With the active support of NTU's hospital administration, the hospital's medical and nursing staff, social workers, and psychologists within the institution, the Children's Hospice and Palliative Care Integration Team was established at the NTU Children's Hospital. The endeavor also involved art therapists, music therapists, and many others in the effort.

Even though the team's efforts are not reimbursed by health insurance, it has not quenched the enthusiasm of NTU's medical staff, which raises funds and even holds regular seminars and case discussions, all for the sake of providing a better medical environment for pediatric patients.

Someone once asked me, "Do you prefer to save lives in the ICU or facilitate the passing of children?" Dr. Lu responds, “To me, ICU should be about giving the most appropriate care to the children, and it is meaningful work as it aligns to the best interest of the child.”  Along with his team, Dr. Lu initiated their efforts in the ICU, and gradually extended into the pediatric cancer unit, where they have hired many personal care workers to participate in children's hospice care and treatment.

In the process, they have come to realize that early intervention of children's hospice not only provides more timely support for various issues, decisions, fears and concerns, but also allows this support to persist and develop even in the case where the child's life tragically comes to an end.

Similarly, there was a child who, after being admitted to the hospital, struggled to accept his own condition. He went from cursing and throwing things to becoming completely silent, with a look of horror and hatred in his eyes for not only the doctors and nurses, but especially to his own parents. His resentment was understandable, yet the team could not find a way to reach into his heart.

It was not until the team learned by chance of his love for Harry Potter that it gave the team a little hope. Dr. Lu  explains that at first the art therapist had to self-direct the play, and the child remained silent until one day he saw the art therapist paint one of the character's clothes in the wrong color; that's when things took a different turn.

"That's not the right color!" the child shouted and pulled the drawing towards himself; he then filled it in with the correct color for the character. This marked a turning point, and he began engaging in the art therapist’s sessions. In his drawings, he progressed from using only black ink to his appearing behind a barred window, and later, he sketched a door. Over time, his drawings became increasingly vibrant, depicting images of himself playing with other children. Consequently, his demeanor improved, too, and he eventually resumed conversations with his parents. They even embraced each other and discussed the future together.

"If we hadn't taken these steps, he would have remained angry until the day of his departure, which would have been even more traumatizing for the whole family," Dr. Lu says empathetically. He emphasizes that the child’s ability to make peace with himself, his illness and his family at the final moments of his life is exactly the essence of what children's hospice aims to achieve.

Program Support Inspires Nationwide Hospitals Involvement

"Hospice and palliative care aim to transform the most challenging memories into positive experiences. It’s not just about avoiding suffering, but also about fostering deeper connections and building legacies of love, whether in the present life or beyond, and even continuing the growth and learning of life," says Dr. Lu. To him, the passing of a child does not mean a complete end, but rather, it leaves behind sentiments of gratitude, appreciation, and blessings.

Hence, after NTU Children's Hospital established the Children's Hospice and Palliative Care Integration Team, it not only provides compassionate care during a child's hospitalization, but also follows up with the family for a minimum of two years after the child's death. Dr. Lu highlights that they are willing to be with the family for longer if they are willing, being prepared to accompany the family until normalcy is restored in both physical and psychological well-being.

According to Dr. Lu, Taiwan's initiative in forming children's hospice teams for supportive care began with Taipei Veterans General Hospital, followed by NTU Children's Hospital. Other hospitals also have varying degrees of involvement in children’s hospice care, but their numbers are limited. When Dr. Ying-wei Wang assumed the role of Director of Health Promotion Administration in 2016, he urgently instilled a program implemented to address the gap in hospice care, specifically focusing on the frail elderly individuals and children.

With a deep commitment to pediatric hospice care, Dr. Lu dedicated himself to obtaining qualifications as a hospice specialist. Presently, there are fewer than 10 pediatricians in Taiwan’s field of pediatrics who also have a hospice specialist license, and he is one of them. As a result, Taiwan Academy of Hospice Palliative Care entrusted Dr. Lu with the work of children's hospice-related efforts. He has been instrumental in contacting major hospitals to form pediatric hospice-related teams. Additionally, he gathered pediatricians, nurse practitioners, social workers, psychologists, children's medical counselors, art therapists, music therapists, and others to publish the Taiwan Children's Hospice and Palliative Care Reference Manual, and have even organized many seminars and training courses.

"This initiative has also led to the establishment of children's hospice teams at Changhua Christian Hospital and National Cheng Kung University Hospital," Dr. Lu says. He mentions that the program has been a major step forward for children’s hospice in Taiwan.

Drawing on Overseas Experiences to Establish Children's Hospice Homes

However, the three-year program came to a halt with the change of leadership at the Health Promotion Administration. Despite the absence of ongoing government support and a reduction in resources, Dr. Lu continues to organize monthly seminars, and has even incorporated children's hospice into the curriculum of NTU’s Department of Medicine and residency programs. He explains, "Currently, pediatric hospice care in Taiwan has not yet reached the stage of widespread development, but we have seen progress. Hopefully, more resources and strength can be gathered in the future.”

Dr. Lu is not alone in his efforts, as there are many countries around the world that are committed to children's hospice care, and all of them have something to teach Taiwan.

The neighboring Japan, for example, is where he most longs to go.

He shares, "I once had the opportunity to visit Maple Leaf House at National Center for Child Health and Development, a children's hospital in Tokyo, Japan. It was founded with the support and sponsorship of Helen House in London, England." Maple Leaf House is a two-story house, and its model of care originates from Helen House. He continues, "Helen House's concept of children's hospice is not quite the same as a hospice ward, in that the whole family can stay there, and its focus is not primarily on medical care."

Dr. Lu points out that in addition to Maple Leaf Home in Tokyo, Japan, there are also children’s hospice homes in Osaka and Yokohama. Furthermore, Japan has a comprehensive system of care for seriously ill and disabled children at home, encompassing care all the way through hospice. These are areas where Taiwan lags behind and needs improvement.

There is growing interest worldwide in children's hospice. For example, in 2023, Malaysia established a Children's Hospice House. Hong Kong has the Society of Children's Palliative Care, which is dedicated to promoting issues related to children's hospice. In China, hospice-related care units are located in Shanghai, Beijing, Nanjing, and Sichuan. Professionals from Taiwan’s hospice community have also selflessly offered assistance and guidance to these regions.

"We hope that one day Taiwan can also establish a children's hospice home,” Dr. Lu further says. Having worked with children for a long time, he further explains that children don't think the same way as adults: "Some want to go home, while others want to be with friends they know.”

Dr. Lu explains that the location for children's hospice does not necessarily have to be at home. The most important thing is to create an environment where the child feels happy, comfortable, and at ease. Therefore, in addition to hospice wards and home-based care, Taiwan's approach to pediatric hospice should be diverse, and establishing children's hospice homes are the next logical step. "What path should Taiwan’s hospice care take in the future? What resources are available to help in this endeavor? These are the elements of progress and development moving forward," he emphasizes.

"Living Well” Hospice Creates Fond Memories

While children's hospice in Taiwan is currently in its early stages of development, Dr. Lu affirms that the development of children's hospice brings a different kind of motivation than adult hospice, which has significantly more resources. He says, "For example, unlike adult hospice that often intervenes only in the last 3 to 6 months of life, children's hospice requires support over many years. Therefore, when facing the end of life, even though it remains impactful and influential, the resources, interactions, and support accumulated during this time can significantly enhance subsequent care, making it more comprehensive."

Traditional hospice care often focuses on a good death, but Dr. Lu frequently poses the question to his audience: "What about when you're alive?”

"Often the children don't know what to do, or how to live a meaningful life, or how to fulfill their wishes in their limited lives and physical capabilities.” Dr. Lu reflects, "Living well is also very important, which is why we need a team to enrich the children's limited lives with vibrant and meaningful experiences. It is equally important to create lasting memories, recollections, and bonds of love for their families.”

Dr. Lu candidly acknowledges that Taiwan still has a long way to go in children's hospice, especially since NTU Children's Hospital often receives referrals from other hospitals, which do not have relevant resources. On the other hand, he also anticipates addressing the needs of children lost through stillbirths and miscarriages in the future, "which is an unmet aspect and a missing piece of the puzzle in Taiwan's overall hospice.”

While the path ahead for children's hospice may be lengthy, it is not without promise. Dr. Lu is filled with confidence especially with all the opportunities for learning and adaption from abroad; along with the increasing number of domestic medical professionals who are devoting themselves to this cause. He says, "Even though child mortality accounts for only one percent of annual deaths in Taiwan, the profound impact and far-reaching ripple effect it creates on the family cannot be underestimated. My hope is that every child can receive the most suitable care, as hospice and palliative care are fundamental rights for everyone."