北京新阳光慈善基金会于2009年在北京市民政局注册成立,其前身为2002年成立的北京大学阳光志愿者协会,由北京大学学生刘正琛在身患白血病后发起成立,2013年在国内率先由非公募基金会转型为公募基金会。新阳光在成立后本着“用爱自己的心去爱别人”的宗旨,在医疗和教育领域创建了“新阳光病房学校”、“生命的礼物”、“阳光骨髓库”等多个品牌项目。
新阳光基金会根据捐赠人或发起人意愿设立、实行专款专用、在本组织运作框架下有一定独立自主性的专用资金。目前在新阳光设立的专项基金有: 峥爱基金、 助医儿童白血病研究基金、 一元儿童噬血基金、 儿童舒缓治疗专项基金、 香柏树专项基金、 爱在专项基金、 爱里的心先心病专项基金、 V爱血液病公益基金、 源公益专项基金、 焕蓝梦想基金、 京西专项基金、 信美相互少儿救助专项基金等。
新阳光联劝伙伴(竹林计划)是北京新阳光慈善基金支持的医疗、教育等领域的初创或者草根公益组织,新阳光为这些组织提供团队培训、能力建设、联合劝募、宣传倡导、咨询等服务和支持,致力于促进医疗、教育等领域公益事业的发展,更好地服务目标人群。
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专访记录
周翾,女, 主任医师,副教授,硕士研究生导师。1995年毕业于首都医科大学儿科系,并就职于首都医科大学附属北京儿童医院内科及血液科至今。她在全国率先开展儿童舒缓治疗项目,2014年8月成立新阳光•儿童舒缓治疗专项基金,2017年10月与北京松堂关怀医院合作,成立全国唯一一个家庭式儿童临终关怀病房——“雏菊之家”,并由慈慧基金会慈燕安宁团队提供安宁陪护志愿服务,以 及病房的部分运营维护工作。
A lot of Chinese families prefer to avoid the topic of death, hoping that its absence from conversation can maybe somehow postpone it. But because of this, some parents with terminally ill children failed to provide them with final care in their final days. However, one Chinese pediatrician is challenging this, with goals to encourage parents to see the benefits of a comfortable and pain-free death. She's also determined to reshape the healing process for families.
许多中国家庭对死亡这个话题讳莫如深,他们希望避免谈论死亡,希冀推迟死亡的来临。但正因如此,一些父母,无法在他们孩子身患绝症时,在孩子生命的最后时光里给予他们最终珍贵的关怀。
然而,一位中国儿科医生向这一禁忌发起了挑战,她希望让这些父母看到舒适无痛死亡的益处,同时,她还致力于重塑家庭的康复过程。
周翾主任在指导如何使用疼痛评分卡
Composer (A. R. Rahman) once said, music is about transporting people, speaking a language which language fails to express. Dudu is a terminally ill five-year-old who's completely paralyzed and bedridden for a brain tumor. A team from colleges and musicians are attempting to communicate with them in a language he understands.
作曲家拉赫曼曾经说过,音乐能够打动人心;它可以表达语言无法传递的内容。
嘟嘟是一位脑瘤晚期瘫痪卧床的五岁患儿。一个由中央音乐学院音乐治疗中心主任刘明明教授和音乐家组成的志愿者团队正尝试用嘟嘟能理解的“语言”来和他沟通。
刘明明教授
“Doctor Zhou introduced us to a music therapist when dudu lost his abilities to speak and move. We thought reading stories might make him happy, but for him, it's music. Once there is music, he starts blinking more and responds more to his surroundings. ”
嘟嘟妈妈:嘟嘟失去语言和行动能力之后,周大夫为我们介绍了音乐疗法。我们原以为给他读故事能让他开心,但实际上能让他真正快乐的是音乐。当他听到音乐后,他眨眼睛的次数会增加,而且对周围环境的也有了更多反应。
左起:周翾主任,志愿者赵莲溪,刘明明教授和嘟嘟妈妈一起为嘟嘟演奏乐曲
Dudu came under the care of a pediatrician, doctor Zhou Xuan, the chief of colleges at the Beijing Children's hospital, when his conditions deteriorated in February. Since then, doctor Zhou and her team of pediatric palliative care specialists have been paying him regular health visits. As they tried to make his days as comfortable as possible. Similar to end of life care or hospice care, the treatment is provided with individuals with six months or less to live, Palliative care can be provided upon diagnosis. Both services remain relatively new concepts in China, where many families are unclear about their subtle differences.
今年二月病情恶化后,嘟嘟接受了北京儿童医院血液肿瘤中心周翾主任的舒缓治疗。在此之后,周主任和她的儿童舒缓治疗专家团队对嘟嘟进行定期随访,因为他们想让嘟嘟在生命最后的时光里尽量过得舒适。
临终关怀是针对生命预期小于6个月的病人,而舒缓治疗则在诊断时就可以开始。儿童舒缓治疗和临终关怀这两种理念在中国相对而言都是新生事物,很多患儿家长、甚至社会公众并不了解其中的概念和差别。
雏菊之家(卧室),全国唯一一个家庭式儿童临终关怀病房
雏菊之家(客厅)
“Many parents assume that undergoing palliative care means their child's health is near the end. Such misconception is one of the reasons why families choose not to reach out to me until their child's condition has gotten extremely severe. Usually by then there's not much we can do for the patient and the family. This also explains why the majority of palliative care in China now is focused around end of life care.”
周主任:很多家长认为进行舒缓治疗意味着他们的孩子已经接近生命的终点。这种误解导致很多家长是在孩子病情极度严重的情况时才找到我。通常到了那个时候,我们能为患儿和家属做的事情已经非常有限了。这也正好解释了为什么现在中国舒缓治疗主要围绕临终关怀展开。
雏菊之家的窗景
In 2013, doctor Zhou decided she would do something to change attitudes surrounding palliative care for children. Supported by some of her colleagues, she started making home visits for free. As her lists of patients grew and workload increased, all these responsibilities presented her with another challenge.
2013年,周主任决定要为转变大众对儿童舒缓治疗的观念做点事情。在一些同事的支持下,她开始做免费的家庭随访。
随着患儿人数和工作量的增加,所有这些责任也给她带来了新的挑战。
Doctor Zhou: We realized that a foundation was needed to sustain our services for the long run. We didn't have any money when we started and all of our initial donors were my old classmates, friends and colleagues. As the team grew, we now have more man power to raise funds, but maintaining stable funding remains the biggest challenge.
周主任:我们意识到如果想要长期、持续地做下去就需要基金会的支持。一开始我们没有任何资金来源,最初的资金捐赠都是来自于我的老同学、朋友和同事们。随着团队的壮大,我们现在有更多的人力来为基金筹款。但是,保证稳定的资金支持仍然是个巨大的挑战。
Despite that, this team was able to expand services beyond health visits. For eight-year old Qiqi who just entered the final stage of brain cancer, this couldn't have come at a better time. Supported by the foundation, Qiqi was moved into a special care unit after the hospital told her family to prepare for the worst. Located on the outskirts of Beijing, in an elderly hospice facility, the care unit brings the touch of home. They can accommodate Qiqi and her family.
尽管如此,周主任的团队还是尽所能在随访之外扩大服务范围。对于八岁的处于脑瘤晚期的琪琪来说,这一切都太及时了。
在基金会的帮助下,在被院方告知做最坏的打算后,琪琪住进了一间特殊的病房。这个病房位于北京东五环外的一家老年临终关怀机构中。这里可以为琪琪和她的家人提供住宿,让他们有一种家的感觉。
“雏菊之家”儿童临终关怀病房启用
(照片说明:中间举雏菊之家牌的是周翾主任和松堂医院的李松堂院长,前排右一是慈燕安宁陪护的资深志愿者王亭,右二是慈燕安宁陪护项目负责人敖春焱,后排右二是中央音乐学院刘明明教授)
雏菊之家客厅一角
“The hospital had to resuscitate my daughter, and then they suggested us to bring her to a hospice care center instead. Her symptoms have stabilized since we moved here. Unlike hospitals, this care unit feels like home, which gave us all a bit more comfort.”
琪琪家长:琪琪被抢救过来以后,院方建议我们入住儿童安宁病房。我们住到这个病房之后她的情况稳定多了。这里跟医院不一样,我们在这里感觉像在家一样,这让我们感觉心里舒服多了。
雏菊之家的小厨房
慈燕团队志愿者在指导家长如何使用疼痛评分卡
Initially paralyzed and unable to speak, Qiqi is now able to move her hand, blink, and even respond to her doctors. Being the only palliative care unit for children in Beijing, it hopes to open similar ones in the coming years. In 2015, doctor Zhou also opened an activity center where her patients can play games, exercise, and live normally. Just ten-minutes walking from Beijing children's hospital, the center is open for 7 days a week and more than 200 volunteers render services here.
琪琪一开始处于瘫痪和失语的状态,现在她可以眨眼,做手势,甚至能对医生的检查做出回应。目前北京只有这一间儿童安宁病房,周主任希望这样的安宁病房数目在未来能够增加。
2015年,周主任还开办了一个能让患儿做游戏、运动、正常生活的活动中心。这个活动中心离北京儿童医院只有十分钟路程,每周开放七天,由200多位志愿者在提供服务。
“In addition to hosting weekly activities for children, we also offer therapy sessions for adults every week. All the money we receive from donations and fundraisers will be built into putting these events together.”
志愿者:除了每周为孩子们举办活动以外,我们也为患儿家长提供心理疏导。我们从捐款和募捐中得到的所有善款都用来组织这些活动。
Last year, the Chinese medical association officially adopted children's palliative care as a sub-specialty in 45 public hospitals across the country. It vowed to add a specialized care team to every one of these hospitals, and doctor Zhou was asked to lead the program. Even though this meant more work, she knew she owned to her patients to carry on the work she started.
去年,在中华医学会下正式成立了儿童舒缓治疗亚专业组,全国45家医院成为组员单位,意味着在这些医院中都将有一个特殊的儿童舒缓治疗小组。而周翾主任也被任命为亚专业组的组长,负责这个项目的开展。
虽然这意味着更大的工作量,但周翾主任认为她要为她的病患负责,有责任把她倡导的这项事业继续开展起来。
Doctor Zhou: When I see how many patients improved after they first came to me, it brings me a sense of joy and fulfillment beyond words. To me, it's not always about how many illnesses I can cure, but more of how much pain I can help take away from these children and their families, so I think I'm destined to do this job.
周主任:当我看到患儿们跟刚来的时候相比,痛苦的状况有所缓解和改善的时候,我内心的喜悦和成就感无以言表。对我而言,和成功治愈多少患者相比,我更在乎能为这些孩子和他们的家庭减轻多少痛苦。所以我觉得我注定了要做这份工作。
周翾主任与慈慧公益慈燕团队成员合影
如需观看专访完整内容,请点击以下两个视频:
感谢慈慧公益慈燕团队长期以来为儿童舒缓治疗和雏菊之家所付出的贡献,以及对本次专访的整理与翻译。