How Children Die in Hospital

Abstract

A retrospective analysis was performed to describe the course of terminal care provided to dying hospitalized children in terms of symptom assessment and management, and communication and decision-making, at the end of life. Seventy-seven of 236 infants and children who died after hospital admission in Edmonton, Canada between January 1996 and June 1998 met entry criteria. Only children who died after a minimum hospitalization of 24 hours in the case of chronic illness or after a minimum hospitalization of 7 days following an acute event were included. Unanticipated deaths were excluded. Eighty-three percent of children died in intensive care settings (64/77), and 78 % (60/77) were intubated prior to their death. Symptoms were recorded in narrative progress notes. Five of 77 (6%) charts contained specific pain assessment and treatment records. Opioid analgesia was provided in 84 % of all cases (65/77). Six (8 %) patients had do not resuscitate (DNNR) orders preceding final hospital admission and 56/71 (79%) remaining patients had documented discussion resulting in DNR decision during final hospital admission. Median time from DNR to death was < 1 day. Mode of death was withdrawal of therapy in 33/77 (43 %), no cardiopulmonary resuscitation (CPR) in 26/77 (34 %), andfailed CPR in 13/77 (17%). Five children were declared brain dead. In only one case was there evidence in the medical record of the possibility of death being discussed explicitly with the patient. Decision-making regarding end-of-life issues in this pediatric population was deferred very close to the time of death, and only after no remaining curative therapy was available. Acuity of care was very high prior to death. Children are rarely told that they are dying.

Circumstances Surrounding End of Life in a Pediatric Intensive Care Unit

“…A strength of this report is its prospective nature, because many previous articles were based on retrospective chart reviews. [3][4][5][6]16,29,30 Such studies may suffer from recall and interpretation bias. 9 Potential limitations of this report are the possibility of "responder bias," as a result of the emotional nature of these encounters and the possibility of recall bias when the main investigator had to interview the staff (13 of 99 cases).…”

“…11 The revelation about the presence of paralyzing agents in some patients at the time of withdrawal of LST and that 2% of the involved professionals believed that hastening death is an acceptable goal in itself generated great controversy. 12-14 Consequently, more information about pediatric intensivists' actual practices regarding forgoing LST in children 8,10,15,16 is warranted. Some details about these events, such as timing of decision making, terminal sedation, barriers to achieve consensus with families, and their participation in the process, remain topics that need additional exploration.…”

Medical End-of-Life Decisions: Experiences and Attitudes of Belgian Pediatric Intensive Care Nurses

“…As found in other studies about end-oflife decisions in children, 5,11 nontreatment decisions are commonly made and are often combined with the decision to intensify the pain/ symptom alleviation with a possible life-shortening side effect. In the latter, death is mostly seen as an unintended consequence of appropriate care, 5 attributed to the ethical principle of double effect, whereas nontreatment decisions are considered as letting the patient die-to undergo a natural death.…”

“…In several European countries, more than one-third of all deaths are preceded by an end-of-life decision. 3 Reports of studies on end-of-life decisions in children indicate that the decision to forgo life-sustaining treatment is the most frequently made decision, [5][6][7][8][9][10] that sedatives and analgesics are regularly used, 5,11 and that in about 3% of deaths, a child's death is preceded by the use of drugs explicitly intended to hasten death. 12 Explicit requests for drugs intended to hasten death (ie, euthanasia) have been allowed in Belgium since 2002, but only for adult patients and under strict precautions.…”

Perfil das condutas médicas que antecedem ao óbito de crianças em um hospital terciário

“…Decisions involving the healthcare team and family members by means of formal meetings have been recorded in the literature with frequency. [12][13][14][15][16][17][18]21,22,[24][25][26] The lack of opportunity for manifestation of wishes was indicated as a significant cause of these findings, showing just how precarious the process of involving interested parties (family members and other professionals) in the decisions is.…”