Yokohama Children's Hospice Project
The Yokohama Children's Hospice Project was a recipient of FIT2021 support and operates a children's hospice where children with life-threatening illnesses and their families can spend quality time in a family-like environment, and it promotes broader use of pediatric palliative care as well as conducting human resource development. We interviewed Mr. Hisato Tagawa, the Director of the Children's Hospice, and Ms. Maki Sugiyama, a member of the administrative office.
The Ocean and Sky Children's Hospice in Yokohama, Exterior
Mr. Tagawa, please tell us about your background and why you started this organization.
When my second daughter was 6 years old, she was diagnosed with a malignant brain tumor that gave her only six months to live. She died five months later. As I asked myself whether I had been able to make my daughter's last days enjoyable, I felt that fighting illness in the hospital was something that was hindering my child's growth and development. I wondered if I could be involved in activities that would allow me to help other parents in similar situations. With the thought that this was the mission my daughter had given me, I established an NPO and started by building "Lila’s Home", a facility where families accompanying their sick children can stay overnight. In the course of these activities, I learned of children's hospices and, taking over a bequest from a nurse, decided to build a children’s hospice in Yokohama. At the time, pediatricians did not yet have much understanding and there was much opposition, but we managed to raise the necessary funds and completed the children’s hospice, ”The Ocean and Sky Children’s Hospice in Yokohama”.
How about you, Ms. Sugiyama?
I lost my second son to a malignant brain tumor 9 years ago. I got acquainted with Mr. Tagawa at a “patients’ group” I was attending and felt so encouraged to learn that he was doing his best under the same circumstances. I decided to participate in this project because I felt an unease that people around me constantly considered my situation of losing my child as a “misfortune,” and I wanted to leave some form of proof that he had lived and that he fought hard against the disease.
Parents have to live on after their children passes, and we have seen cases in which a child’s end-of-life experience greatly affects the subsequent life of the parents. Parents who could not spend meaningful time with their children, concentrating only on the treatment of the illness suffer and regret so much that they cannot recover fully after the child has passed. On the other hand, parents who were able to spend some enjoyable time forgetting about the illness for a short while, and see their children’s happy face more are able to spend the rest of their lives with a fulfilled feeling. For this reason, when I see the faces of children who really seem to be enjoying themselves at “The Ocean and Sky Children’s Hospice in Yokohama”, I am truly happy that this place was established.
What kind of place is a children's hospice?
A children's hospice is a place where children with life-threatening conditions and their families can spend time together. For the children, it is a place to forget about their illness and have fun, and for the parents, a place where they can spend a memorable time with their children and be close to staff who understand their situation. Even after the child passes away, the staff who shared their time with the child continue to connect with and support the parents.
The Ocean and Sky Children's Hospice in Yokohama, Everyone's hall
What were the most challenging and positive aspects of starting up your organization?
In the beginning, while setting up facilities for families of sick children, we were engaged in various activities, such as organizing in-hospital concerts and providing childcare for the brothers and sisters of sick children. It was very difficult to gain the understanding of many existing parties to launch a new children's hospice project, as there had always been little understanding in the medical community.
The positive aspect is that we can see the happy faces of the families who use our facility, especially the children. We have had about 20 families so far, and when they leave, they always tell us, "Oh, I really enjoyed our time here”.
How about you, Ms. Sugiyama?
There are still only two children's hospices, in Japan, hence we cannot ask for advice on how to run them but must make all the decisions ourselves. The good thing is, in addition to what Mr. Tagawa mentioned, that not only do the children who use the hospice enjoy it but also their families. Families with children with life-threatening illnesses have few people to talk to, and they tend to isolate themselves from the rest of the community. I am glad that they can come here and talk with our staff from a casual conversation to slightly deeper topics without feeling self-conscious, just like friends.
How do the families spend their time at “The Ocean and Sky Children’s Hospice in Yokohama”?
For example, families, grandparents, and friends can hold birthday parties, or if they stay overnight, they can cook dinner together with their children and enjoy fireworks. The facility has a large bath and mist shower, the parents, usually exhausted from looking after the sick child, can take their time having a bath while the staff can watch the children. It is a place where the families can have a leading role in how they enjoy their time together.
Where do the families who use the service come from?
Because of its location, the hospice is often used by people from Kanagawa Prefecture, but we have had people from Fukushima Prefecture who use the facility on their way home from hospital treatment.
How are the FIT funds being used?
We use the funds to purchase a variety of tools to ensure that the families who use our facility have a good time. Families have very different wishes, such as playing in the water, fishing, fireworks, and so on. We use FIT’s donation to meet their wishes as best we can.
We will also use the funds to create publicity tools to promote Children's Hospice, such as booklets and videos to be distributed to educational institutions.
What do you want to do next?
At the present, there is no system to support children with life-threatening conditions and their families in Japan. Next year, the government will establish a "Children and Families Agency,” so we would like coordinate with the government to provide even greater support for children with incurable diseases and their guardians than before, including increasing the number of children's hospices in Japan. There is a great need for children's hospices, and we have received inquiries and requests to come and visit the hospice from all over Japan.
What can we do to help?
It may be difficult now for you to do something directly at this location due to the pandemic, but it would be helpful if you could hold a study session to deepen the understanding of Children's Hospice in your companies. When the COVID-19 situation improves, please come and visit us.
Yokohama Children's Hospice Project
Mr, Tagawa and Staff