Project HOPE and Shanghai Children's Medical Center leaders helped educate health care providers on the needs and issues of pediatric end of life care at a one and a half day training supported of the “Heart of Gold’ hospice care program. The Li Ka Shing Foundation started this program in 1998 to provide free home-based hospice care for adult cancer patients through the Shantou University Medical College. ”Dignity in death is priceless and care and respect for those with terminal illness are key indicators of our social values and the mark of any civilized society,” stated Mr. Li Ka Shing, whose generous donation made the hospice program possible. The program has expanded to a network of 30 key hospitals across China and the model is also implemented in key public hospitals in Hong Kong. This program provides free in-home hospice care with services to address pain relief, provide psychological counseling and deliver other terminal care needs. to equip these program leaders and service providers with the right knowledge and approaches to effectively care for children at the end of their lives.
A team consisted of Lily Hsu (Director of Project HOPE Shanghai), Dr. Tang JinYan (SCMC Chief of Oncology), Dr. Wan JinMin (SCMC Oncologist) and Dr. Ji QingYing (SCMC Hospital Vice-Director/President and Chief of Social Workers) conducted the training session designed to equip program leaders and service providers with the right knowledge and approaches to effectively care for children at the end of their lives. The session included an in-depth review of 11 case studies covering topics such as communication, pediatric care, cancer symptoms and pain management. Attendees included doctors, nurses, and social workers from 32 different hospitals throughout China.
In reviewing the case studies, one area that brought about passionate discussions was how far service providers should go in providing compassion end of life care but not intervene in family affairs such as religious disagreements. A big training topic that also generated considerable discussions was the importance of proper communication with parents and patients. The team also addressed techniques for health care providers to teach parents how to communicate with their child, such as being honest as older children often have a sense of what is going on. In a case study that the team shared, the teenager already knew that he was at the end of his life by the time the parents worked up enough courage to talk to their son. In fact,when they finally spoke, the son told his parents that he was more worried about them than dying. Lily stated that “parent-child communication is such a critical component and that it should be as open and honest as possible, but managed as a process.” She also added that she “really admired the local health care providers as they are providing not only end of life care, but typically have to do so effectively with limited resources and much compassion and creativity.”
Personally, I think dying is a topic that scares most of us in some ways and probably one topic that most of us do not want to discuss or think about, let alone the thought of having to use hospice care to ease our passing. Both death and hospice care are taboo topics in many societies and there are certainly many believes and fallacies surrounding these topics, especially in China. It certainly was true in my family. We did not want to discuss death until we were faced with my father's death two years ago. His illness not only forced the discussion of death, but the unique situation of using hospice care when there is no hope of recovery, especially for those that are brain dead. I clearly recall doctors and specialists telling my brother and me that there was “no hope of any recovery” and my father would eventually leave us. After much consideration, mainly on what my father would want, I chose hospice care with support from my brother and mom, despite strong verbal objections from some of his extended family members. Hospice care allowed an opportunity for all the people he cared about, a chance to say good bye as well as his family to walk with him in his last mile in peace and with dignity. He was a great man that loved life; he touched so many with his kindness during his adventurous but hard life.
Connie Lieu is a Pfizer Global Health Fellow volunteering with Project HOPE China to strengthen health on non-communicable disease prevention, intervention, and management for patients with risk factors, and health care providers.
Get news from the field and updates on how your donations are being put to work.
Read and share stories about Project HOPE with your personal network.