距离首都医科大学附属北京儿童医院不远的一栋酒店里,藏着一家“托儿所”。儿童桌椅,乐高玩具,故事绘本……若不是入口处挂着“儿童舒缓治疗活动中心”的招牌,很难看出它有什么特别之处。
 
 
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儿童舒缓治疗机构:让每一朵“雏菊”有尊严地开放

??谕ttp://www.sunbrood.com 时间:2019-08-31 08:11

  儿童舒缓治疗不仅能帮助身患恶性疾病的患儿,也能抚慰他们的家庭

  让每一朵“雏菊”有尊严地开放

  距离首都医科大学附属北京儿童医院不远的一栋酒店里,藏着一家“托儿所”。儿童桌椅,乐高玩具,故事绘本……若不是入口处挂着“儿童舒缓治疗活动中心”的招牌,很难看出它有什么特别之处。

  “看到身患恶性疾病的孩子被治愈是所有人的愿望?!弊鲆缴?0余年,北京儿童医院血液肿瘤中心医生周翾见过许多病愈后的欢笑,也目睹了大量患儿因不当或过度治疗,承受巨大的生理和心理痛苦。2015年,周翾与相关基金会合作,建立起这间儿童舒缓治疗活动中心;两年后,她又通过众筹的方式,开办了北京第一家儿童临终关怀病房“雏菊之家”。

  “让能够痊愈的孩子活得更好,让无法治疗的孩子走得更平静?!痹谥苈Q和她的团队的努力下,不少来自全国各地的血液肿瘤患儿家庭,在病房和出租房之外,找到了能获得片刻安宁的栖身处。

  舒缓治疗不是放弃治疗

  “舒缓治疗不是放弃治疗?!敝苈Q不记得自己做了多少次类似的解释。她在北京儿童医院开设了舒缓门诊,不少经介绍而来的家长上门后的第一个问题都是:“这是不是表示我的孩子没救了?”

  其实,大部分来到活动中心的孩子都已经挺过了最难的治疗阶段,进入较为稳定的维持期。但由于长期生病和化疗,患儿无法按正常轨迹成长,还可能出现感染、呕吐等症状,整个家庭都因此承受着压力和痛苦。

  “所谓儿童舒缓治疗,就是让患有威胁生命的疾病或慢性疾病的儿童,从生理、心理等方面获得跨学科团队的帮助,这种帮助同时包括了对患儿家庭的帮助?!敝苈Q告诉记者。

  免费开放4年多来,儿童舒缓治疗活动中心几乎全年无休,由志愿者轮流值班。从墙上张贴的一张课程表记者看到,活动中心为患儿安排了花艺、剪纸、国学小课堂等课程。舒缓治疗活动中心负责人于瑛介绍,由于高敏感度的身体状况,患儿即使病情趋稳,短期内也不能到公共场所玩耍,更不能正常上学?!霸谡飧鎏厥獾摹锥啊?,孩子们能学习、能社交,他们不会觉得自己和普通孩子有很大的不同?!?/p>

  在中国,平均每1小时,就有4名儿童被诊断为恶性肿瘤,最常见的是白血病、淋巴瘤和实体肿瘤。以白血病为例,虽然医学的进步使得80%的白血病儿童可以被治愈,然而仍然有近五分之一的的孩子没有这样的机会??吹皆邮芄婊褐瘟频暮⒆右蛑琢龈捶?,在生命末期还要承受不必要的治疗之苦,周翾觉得,舒缓治疗还要再向前进一步。

  2017年,北京第一家儿童临终关怀病房“雏菊之家”在北京松堂关怀医院创立。在那里,病房布置得像家一样温馨,专业医护人员会通过药物减轻疾病带给患儿的疼痛,家人和志愿者陪着孩子们聊天、游戏,让他们平静度过最后的时光。

  “人间走一回,有尊严地告别,与好好活着一样珍贵?!敝苈Q说。

  疼在身上,也痛在心里

  在舒缓治疗活动中心服务一年多,庞超对一位5岁的男孩记忆很深刻。刚来时,男孩常?;嵛拊ふ椎馗呱饨?。在一次活动中心组织的演出中,他的尖叫甚至让演出无法继续。

  “你为什么要这么叫???”庞超问,男孩只挤出了一个字——“疼”?;匾淦鸬笔钡某【?,庞超依然唏嘘不已。

  疼痛,是每一位恶性疾病患儿在治疗过程中不可避免的经历。疾病本身会疼、做腰穿骨穿会疼、化疗会疼,化疗以后长细胞会疼……但是,在许多救子心切的家长看来,为了挽回孩子的生命,疼痛是可以忍耐的,也不需要做特别处理。

  “实际上,疼痛会严重影响孩子的睡眠、情绪和生活质量?!敝苈Q说,疼痛管理在舒缓治疗中居于重要位置,轻度疼痛,可通过转移注意力、按摩等方式缓解。当疼痛达到中重度级别后,就需要药物干涉?!熬×咳没级械绞媸?,这是目前广受推崇的理念?!?/p>

  除了镇住生理上的疼,缓解心理上的痛也是舒缓治疗的关键一环。

  庞超遇到过不敢睡觉的孩子,“有的怕睡下就醒不过来,有的怕过去在梦中见到的不好的场景?!被褂幸桓瞿昙蜕源蟮暮⒆痈嫠咧苈Q,生病后他最怕别人或怜悯或好奇的眼光,所在的学校为他募捐,他却趁天黑把海报撕掉了。

  在舒缓治疗活动中心,患儿家庭可以在周六下午预约一对一心理辅导?!昂⒆硬×?,更煎熬的是大人?!庇阽嫠呒钦?,儿童舒缓治疗与普通成人安宁疗护最主要的区别,是前者需要花费大量人力和时间对家长进行心理干预和疏导,“丧子对任何一个家庭来说都是巨大的打击?!?/p>

  对每一个前来舒缓治疗的孩子,志愿者们都不会主动询问病情。但庞超发现,家长们会自发抱团取暖。从一开始分享租房、挂号等信息,到后来相互倾诉、安慰,“无意间,这也成了家长们的一种支撑?!?/p>

  改变观念,是治疗的第一步

  于瑛时不时会收到家长的“抱怨”:活动中心太小了。由于场地限制,活动中心每节课最多只能容纳10名孩子参与,“通知刚发出不久,名额就报满了,常常有家长报不上名?!?/p>

  更令周翾和于瑛感到迫在眉睫的,是要尽快募集资金给“雏菊之家”增加床位。目前,“雏菊之家”每次只能接收一个家庭,已经有好几位患儿的家庭在排队等候。

  资金紧缺,是周翾团队面临的最现实的问题。据了解,目前,舒缓治疗活动中心和“雏菊之家”的运行、维护费用大部分依靠相关儿童基金会的捐款。要扩大规模,这些钱远远不够。

  2017年,原国家卫生计生委曾出台了《安宁疗护中心基本标准(试行)》和《安宁疗护中心管理规范(试行)》,对于安宁疗护机构的建设标准等进行了规范。如北京市提出,在综合医院、专科医院、护理院、社区卫生服务中心等开设安宁疗护病区,增加服务资源,逐步提高安宁疗护床位数。

  “具体到儿童舒缓治疗领域,无论是场地设施还是从业人员培训,乃至观念培养,我国都还有很大的提升空间?!本葜苈Q介绍,目前除了北京、上海等一线城市,许多地区还没有儿童舒缓治疗和临终关怀机构。她正在与全国各地的同行推动儿童舒缓治疗标准课程的制定,建立实习基地,组织更多培训。

  在最早推行儿童舒缓治疗的上海儿童医学中心血液肿瘤中心,10余年里只为100来位生命末期的患儿提供了安宁照顾。事实上,该中心每年收治的各类新发血液肿瘤疾病患儿都有600多例。

  “儿童舒缓治疗应贯穿于疾病治疗的全过程,第一步,就是让更多人接受这一理念?!苯衲?月,在一场公益活动中,周翾做了题为《让不被治愈的孩子走得更有尊严》的演讲。关于“为何要做舒缓治疗”等内容,她已经在不同的场合陈述了很多遍,但她说,这件事,她还要继续说下去,也要继续做下去。

  曲欣悦

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相关链接:

联合国难民署:全球学龄难民儿童过半未上学
17天内??诜⑸?起儿童离家出走事件 背后原因不容忽视
专家提醒?;ざ恿π璋盐杖鍪奔涞?/a>

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