Seminar in Osaka

Adapted from the Japanese by James Huffman

On October 7 at the Osaka City Central Public Hall, a seminar on hospice services for children was organized by Britain's Helen & Douglas Houses and the Japan Hospice Palliative Care Foundation. Some 700 physicians, nurses, and others involved in the medical profession attended to listen to presentations by the founder of the Helen & Douglas Houses and British physicians. Following the presentations, participants eagerly discussed how best to establish a children’s hospice in Japan.

Hospice, while comparatively new to Japan, is beginning to take root. In countries such as the United Kingdom, Germany, and the United States, children’s hospices--which have yet to appear in Japan--undertake services somewhat different from those provided by adult hospices. They provide services for children with life-threatening conditions, including neuromuscular diseases, birth defects, and pediatric cancer. It is important to note that in the case of children's hospices, the patients are not necessarily terminally ill. In addition, the facilities play a key role in supporting families caring for such children.

Sister Frances (at podium) shows a photo of herself with a girl at Helen House.

The Helen & Douglas House provides children with private, home-like rooms and personalized care. Children spend their time together in the facility's garden, swimming pool or playroom. While the facility also provides rooms and meals for families, members are free to choose whether to stay at the facility or elsewhere. This care is available for two to three weeks per year per family. Thanks to outside funding from various sources, families are not required to cover the cost of the services provided.

Seminar participants included medical professionals and a handful of government representatives.

The seminar featured a slide show introducing the impressive conditions at the facility. Sister Frances Dominica, founder of the Helen & Douglas House, described the inspiration for the creation of the facility. "It all started when I offered to take care of a two-year-old girl named Helen, who had been diagnosed with an untreatable condition. Her parents took her to and from care facilities, and I saw how overworked and exhausted they looked.”Helen House opened in Oxford, England in 1982, as the world's first hospice for children.

Dr. William Thorton, who works at both Helen House (for patients from infancy through age 18) and Douglas House (for patients between the ages of 16 and 35) described how hospice care differs from examination and treatment at a hospital: “Medical activities at the houses involve not just treatment, but efforts to improve quality of life and provide support at a deeper level.” Dr. Ryuhei Tatara, chief physician of the palliative care and pediatric internal medicine departments of Osaka City General Hospital, discussed pediatric palliative care, an established specialty in the UK, as well as the state of medical care in this field.

The panel calls for the establishment of children’s hospices in Japan.

Following the presentations, participants took part in a panel discussion. Issues discussed included: speculation on the reasons that Japan has no children's hospices (the U.K. has 41); the challenge of finding the necessary funding (estimated at 300 to 500 million yen annually for each facility); and the idea of choosing a more suitable name for the service, given the strong associations of hospice with terminal care.

As they listened to discussions of palliative care in the United Kingdom, the participants appeared to grow ever more enthusiastic in their hopes of establishing a hospice for children in Osaka, the cradle of hospice programs in Japan. This seminar was funded in part by The Nippon Foundation’s Yume no Chokin-bako (“Dream Piggy Bank”). Yume no Chokin-bako receives donations through various activities, including the installation of Yume no Jidohanbaiki (“Dream Vending Machines”), which provide 10 yen of donated funds for every drink bought. All donations go toward activities that contribute to society.