蘋果專欄:媽祖抵家 護你平安

:trophy: 上個月 27 日是第二屆「總統盃黑客松」的決選日,恭喜「出巡隊」、「銀髮天使」、「司法院」、「詐貸掏空早知道」與「資料申請小幫手」等五支隊伍獲選為卓越團隊,得到蔡英文總統的親自表揚。

:princess: 作為首先獲獎的卓越團隊,「出巡隊」的核心命題是「媽祖抵家,護你平安:提供選擇在家安寧的民眾與家庭,一個學得到、找得到、照顧到的精準安寧照護知識平台」,由衛福部護理及健康照護司提案。協作夥伴有:凌網科技、中衛發展中心、陽明大學、劉燕玲居家護理所。

:hospital: 根據國內外文獻查證,絕大多數的末期病患有「二要、三不要」:要自主、要在家,不要痛苦折磨、不要無效延長、不要拖累家人。然而,實際上,臺灣絕大多數的末期患者都在醫院離世。

:ambulance: 以臺灣十大死因之首的癌症為例,每年有近五萬名國人死於癌症,其中,有八成就是在醫院離世。何以致之?「出巡隊」認為,居家安寧至今仍有三個痛點,需要解決:

  • :hushed: 第一, 患者與家屬「不知道」會發生什麼變化,以及需要進行哪些準備;
  • :dizzy_face: 第二, 對於在家照護的品質,以及社區鄰近的資源是否足夠,感到「不安心」;
  • :thinking: 第三, 「不預期」病狀會如何發展,導致應急處理時常措手不及。

:signal_strength: 即便看似問題重重,團隊依然成功展示出改變的可能。簡單來說,透過資料整合與科技應用,「出巡隊」將臺灣名列世界前茅的安寧照護典範經驗,轉化成為讓患者與家屬在家透過手機或電腦,即可使用的「機動智慧照護支援平台」。

🖧 對患者來說,可以事先了解病情演變、學習需要準備的自我照護技能,例如減緩疼痛的步驟;對家屬而言,可以通過單一窗口,獲取多元資訊與支持服務。再者,異地分隔的家人,也能透過即時數據或影像更新,同步掌握病患的身體變化。

:children_crossing: 當然,安寧照護的本質還是要回到人身上。功能再強大的醫療知識平台,如果離開了醫病關係的互信,或是缺乏家屬與病患的接納,也無法獨自運行。

:house_with_garden: 因此,在持續發展「出巡隊」智慧照護平台及專家人工智慧系統以外,衛福部也承諾將強化社會對話、普及照護知識,達成「準備善終做得到,在家好走零距離」的目標。

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:trophy: July 27th was the final selection day for the second Presidential Hackathon. Congratulations to “Rounding Team,” “Angels of the Aged,” “Judicial Yuan,” “Loan Alert” and “Gov Data Opener,” the five selected outstanding teams that were commended by President Tsai Ing-wen in person.

:princess: As the first outstanding team to win the award, the core proposition of “Rounding Team” was “Mazu protecting you at home: Providing individuals and families who choose to stay at home for end-of-life care with a targeted end-of-life care knowledge platform that is easy to learn from, easy to locate, and offers care that reaches its target,” proposed by the Ministry of Health and Welfare. Collaboration partners include: Hyweb Technology, Corporate Synergy Development Center, National Yang-Ming University, and Liu Yen-ling Home-based Care Center.

:hospital: Based on verification with domestic and foreign literature, the vast majority of terminally ill patients have needs based on “two do’s and three don’ts”: to be independent, to be at home, not to suffer, not to prolong life in futility, and not to burden one’s family. However, in reality, the vast majority of terminally ill patients have passed away in hospitals.

:ambulance: Taking cancer, ranking top among the top 10 causes of death in Taiwan, as an example, close to 50,000 people die of cancer every year, among whom 80% were in hospitals. Why is this? “Rounding Team” believes that there are currently three problems in home-based care that need to be resolved:

  • :hushed: First, the patient and their family members are “uninformed” what changes may occur and what preparations need to be made;
  • :dizzy_face: Second, people feel “uneasy” about the quality of home-based care and whether resources available in the neighborhood and community are adequate;
  • :thinking: Third, “unexpected” symptoms may develop, resulting in being ill-prepared in responding to emergencies.

:signal_strength: In spite of the mounting problems, the team nonetheless successfully demonstrated the possibility for change. Put simply, through data integration and technology application, “Rounding Team” is transforming the exemplary experiences of end-of-life care in Taiwan that rank among the top in the world into a “smart mobile care support platform” that patients and their family members can use at home through mobile phones or computers.

🖧 For patients, they can gain an understanding of developments in their condition in advance and learn the skills of self-care they need to prepare, such as steps to alleviate pain. For family members, they can gain access to diverse sources of information and obtain support services through a single channel. Also, family members who live away from the patients can also gain up-to-date information on the physical changes in the patient through real-time data and image updates.

:children_crossing: Of course, the essence of end-of-life care ultimately lies in the people. However powerful the functions of medical knowledge platforms, they cannot operate if they are detached from mutual trust between care providers and patients, or face resistance from the patient or their family members.

:house_with_garden:Thus, on top of continuing to develop the smart care platforms and specialist artificial intelligence systems proposed by “Rounding Team,” the Ministry of Health and Welfare has also promised to strengthen social dialogue, popularize care knowledge, and achieve the goal of “fully preparing for peaceful end-of-life care and zero gaps in home-based care.”