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[筆記] A "good" death in a pediatric ICU: is it possible?

  • 來源:Jornal de Pediatria (Rio J) 2003; 79(Suppl 2):S243-S54
  • 作者:Daniel Garros, Assistant Professor, Department of Pediatrics, University of Alberta, Canada;Pediatric Intensive Care Unit, Stollery’s Children’s Health Centre, University Hospital, Edmonton, Alberta, Canada.
  • 緣起
    1. PICU, 14y/o, Girl, Myocarditis, died, suddenly
  • 背景與目的
    1. In PICU, physicians are often faced with the need to interrupt life-sustaining treatment (LST) and to allow children to die when no further treatment options are available.
    2. The goal of this review is to provide intensivists with guidelines to allow PICU patients to have a more dignified and humane death.
  • 方法
    1. Review article: search MEDLINE: Key words (death, advance directives, assisted suicide, brain death, modes of death, withdrawal, withdrawal of care, withdrawal of treatment, DNR, parents, decision-making) + ICU patients
  • 結果
    1. 預計這年裡, 全世界小於5歲的小朋友中, 有1100萬個將會死亡, 而其中, 超過一半, 約600萬人次, 處於被 “延長死亡” 的狀態. 文獻裡頭呈現的結果, 有不少關於end-of-life care的討論, 但多集中在oncology, 特別是一般成人的ICU, PICU似乎不在研究之列, 這是否代表說, 在PICU中討論死亡是不正當的呢?
    2. Modes of death in ICU
      1. Modes
        • Death after resuscitation attempts- failed CPR
        • Do-not-resuscitate (DNR) order
        • Withdrawal of life sustaining treatment (WDLS) or withholding of life sustaining treatment (WHLS)
        • Brain death (BD)
      2. In Canada, more than half (59/99, 59.6%) of the patients died after a specific decision (WDLS + WHLS) made by the family and medical staff, not including BDs.
    3. The decision-making process: 對臨終病人“家屬意見”的相關研究仍然太少!!
      1. What families tell us
        • being included in the decision-making process
        • avoiding protracted death
        • receiving clear explanations about the role of the family
        • getting help in order for the family to reach a consensus
        • receiving proper amount of good-quality information at the right time
      2. 在北美PICU, Family-centered care: 家屬有足夠的參與, 甚至包括daily medical rounds, 訪客時間更多, 訪客限制更少, 因此家屬可以擔任主要決定者.
      3. Conflicts between the medical staff and families
        • Factors: Religion was the only one that showed predominance in our study.
        • Another reason: difference of opinion between the health professionals
    4. “Good death” in PICU
      1. Management of pain and physical discomfort (death with no pain or physical discomfort)
      2. Appropriate preparation for death, including religious rites and rituals, etc.
        • How long will the child survive after WD/WHLS? Average 24 hours after DNR implementation, and 3 hours after WD/WHLS (p < 0.05)
      3. Opportunity to go over one’s life and recall important moments and say goodbye
        • Any school-aged child (9-10 y/o) can perfectly understand the meaning of death and could perceive his/her own death. So, the patient can and should be involved in the decision-making process
        • Physicians should never say “unfortunately, there is nothing we can do for your son/daughter”. The most appropriate question physicians should ask at this time is “what else can I do for you in such hard times?”
      4. Presence of the family
        • It is important to tell the family what may or may not happen during and after WDLS.
        • Some reminders: Ask the family members whether they would like to hold the child in their lap, or…
      5. Right to privacy and appropriate place
        • Nowadays most people die at hospitals. If possible, the child should be offered the option to have LST modalities removed in a more familiar environment. The solution we found in our PICU was to turn one of the isolation rooms (“butterfly room”) into a place for palliative care.
      6. Bereavement care - our work has not finished yet
        • After the death of a child in the PICU, parents feel abandoned and all alone. A bereavement group may give the families the support they cannot find anywhere else, helping them overcome the painful experience of losing a child.
  • 結論與討論
    1. The multidisciplinary team can transform the PICU’s unpleasant environment into a “temple” of compassion, humanization, respect, openness and dignity.
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