{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,9]],"date-time":"2026-09-09T16:39:19Z","timestamp":1788971959093,"version":"build-2803163510"},"reference-count":10,"publisher":"SAGE Publications","issue":"1","license":[{"start":{"date-parts":[[2022,6,7]],"date-time":"2022-06-07T00:00:00Z","timestamp":1654560000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2022,6,7]],"date-time":"2022-06-07T00:00:00Z","timestamp":1654560000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Palliative Medicine Reports"],"published-print":{"date-parts":[[2022,8]]},"abstract":"<jats:sec>\n                    <jats:title>Background:<\/jats:title>\n                    <jats:p>With the rapid progress of medical technology, the number of children with medical complexities who require advanced medical care, including mechanical ventilators, has been increasing steadily in Japan. Accordingly, the issue of how to provide holistic care and support for the entire life of the children with severe motor and intellectual disabilities (SMID) who live at home has become a new challenge.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Case Presentation:<\/jats:title>\n                    <jats:p>We present the case of a three-year-old boy with SMID due to HHV-6B-induced hemorrhagic shock encephalopathy who was cared for at home by the home visit medical team of Osaka Developmental Rehabilitation Center (ODRC; residential facilities with the department of home medical treatment and care). He developed septic shock triggered by an urinary tract infection and was admitted to Osaka General Medical Center (OGMC; acute care facility not directly affiliated with ODRC), where he deteriorated to a terminal stage. After discussing advance care planning (ACP) with his parents, along with the medical team, an ACP document with parental wishes was created through collaboration between the two facilities. The document was approved by the Ethics Committee at OGMC and the parents signed the document. Special end-of-life care planning was given by nurses at OGMC based on the best interests of the patient and the family. The patient passed away peacefully surrounded by his family in a private room of OGMC according to the ACP, despite special limitations caused by the coronavirus disease 2019 (COVID-19) pandemic.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions:<\/jats:title>\n                    <jats:p>ACP provides a good opportunity to think about the best total care for a child with SMID, for whom it is too difficult to express his or her wishes, together with the parents, who are the legal representatives. The collaboration between two institutions with different roles brought out the best of each, and the resulting ACP was beneficial to the patient and their family.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1089\/pmr.2021.0050","type":"journal-article","created":{"date-parts":[[2022,6,7]],"date-time":"2022-06-07T17:20:01Z","timestamp":1654622401000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":4,"title":["Pediatric Advance Care Planning for a Patient with a Severe Motor and Intellectual Disorder through Cooperation between an Acute Care Hospital and a Residential Facility"],"prefix":"10.1177","volume":"3","author":[{"given":"Hiroshi","family":"Wada","sequence":"first","affiliation":[{"name":"Department of Pediatrics of Osaka Developmental Rehabilitation Center, Osaka, Japan."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Masahisa","family":"Funato","sequence":"additional","affiliation":[{"name":"Department of Pediatrics of Osaka Developmental Rehabilitation Center, Osaka, Japan."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kiyoshi","family":"Takemoto","sequence":"additional","affiliation":[{"name":"Department of Pediatrics of Osaka Developmental Rehabilitation Center, Osaka, Japan."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yoshitaka","family":"Iijima","sequence":"additional","affiliation":[{"name":"Department of Pediatrics of Osaka Developmental Rehabilitation Center, Osaka, Japan."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Atsuko","family":"Kashiwagi","sequence":"additional","affiliation":[{"name":"Department of Pediatrics of Osaka Developmental Rehabilitation Center, Osaka, Japan."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Natsuko","family":"Shiomi","sequence":"additional","affiliation":[{"name":"Department of Pediatrics of Osaka Developmental Rehabilitation Center, Osaka, Japan."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Shigetoyo","family":"Kogaki","sequence":"additional","affiliation":[{"name":"Department of Pediatrics of Osaka General Medical Center, Osaka, Japan."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tomoko","family":"Maruyama","sequence":"additional","affiliation":[{"name":"Department of Pediatrics of Osaka General Medical Center, Osaka, Japan."}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2022,6,7]]},"reference":[{"key":"e_1_3_4_2_2","volume-title":"Oxford Textbook of Palliative Care for Children, 2nd ed","author":"Hynson JL","year":"2012","unstructured":"Hynson JL: The child's journey: Transition from health to ill health. In: Goldman A, Hain R, Liben S (eds): Oxford Textbook of Palliative Care for Children, 2nd ed. New York: Oxford University Press, 2012, pp. 13\u201322."},{"key":"e_1_3_4_3_2","unstructured":"Guidelines for Discussing Medical Care for Children with Serious Illnesses. 2012. https:\/\/www.jpeds.or.jp\/modules\/guidelines\/index.php?content_id=31 (Last accessed February21 2022)."},{"key":"e_1_3_4_4_2","first-page":"832","article-title":"A questionnaire on end-of-life care in institutions for severe motor and intellectual disorders","volume":"121","author":"Funato M","year":"2017","unstructured":"Funato M, , Takemoto K, , Iijima Y, et al.: A questionnaire on end-of-life care in institutions for severe motor and intellectual disorders. J Jpn Pediatr Soc, 2017; 121:832\u2013837.","journal-title":"J Jpn Pediatr Soc"},{"key":"e_1_3_4_5_2","doi-asserted-by":"publisher","DOI":"10.1136\/adc.2009.160051"},{"key":"e_1_3_4_6_2","doi-asserted-by":"publisher","DOI":"10.1177\/0269216315573000"},{"key":"e_1_3_4_7_2","doi-asserted-by":"publisher","DOI":"10.1177\/0269216316679913"},{"key":"e_1_3_4_8_2","doi-asserted-by":"crossref","first-page":"93","DOI":"10.1186\/s12904-018-0347-8","article-title":"A qualitative study of health care professionals' views and experiences of paediatric advance care planning","volume":"13","author":"Jack BA","year":"2018","unstructured":"Jack BA, , Mitchell TK, , O'Brien MR, et al.: A qualitative study of health care professionals' views and experiences of paediatric advance care planning. BMC Palliat Care, 2018; 13;17:93.","journal-title":"BMC Palliat Care"},{"key":"e_1_3_4_9_2","unstructured":"End of life care for infants children and young people with life-limiting conditions: Planning and management. London: National Institute for Health and Care Excellence (NICE) 2019. https:\/\/www.ncbi.nlm.nih.gov\/books\/NBK554708\/ (Last accessed February21 2022)."},{"key":"e_1_3_4_10_2","doi-asserted-by":"publisher","DOI":"10.1136\/archdischild-2020-320353"},{"key":"e_1_3_4_11_2","first-page":"1502","article-title":"A comatose, respirator-dependent case with severe brain damage and approach to end-of-life care in accordance with advance care planning","volume":"118","author":"Funato M","year":"2014","unstructured":"Funato M, , Takemoto K, , Iijima Y, et al.: A comatose, respirator-dependent case with severe brain damage and approach to end-of-life care in accordance with advance care planning. Jpn Pediatr Soc, 2014; 118:1502\u20131507.","journal-title":"Jpn Pediatr Soc"}],"container-title":["Palliative Medicine Reports"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1089\/pmr.2021.0050","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1089\/pmr.2021.0050","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1089\/pmr.2021.0050","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,5,1]],"date-time":"2026-05-01T23:56:17Z","timestamp":1777679777000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/full\/10.1089\/pmr.2021.0050"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,6,7]]},"references-count":10,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2022,8]]}},"alternative-id":["10.1089\/pmr.2021.0050"],"URL":"https:\/\/doi.org\/10.1089\/pmr.2021.0050","relation":{},"ISSN":["2689-2820","2689-2820"],"issn-type":[{"value":"2689-2820","type":"print"},{"value":"2689-2820","type":"electronic"}],"subject":[],"published":{"date-parts":[[2022,6,7]]},"article-number":"pmr.2021.0050"}}