Anticipating death in children and adults with childhood onset severe central nervous system impairment: A case series review
adult
Objectives * Discuss problems due to severe central nervous system impairment that can remain intractable to treatment options. * Define tipping points that can prompt anticipatory discussions, including suggested recommendations that best meet goals. * Utilize language strategies that prepare families when prognosis is not possible. Little is written about trajectories and features that precede death in those with childhood onset severe central nervous system (CNS) impairment. This session will cover this topic through a review of deaths at a long-term care facility for children and young adults with severe neurological impairment and associated complex medical care needs. Of the more than 30 deaths, the majority (70%) were anticipated and guided by goals of care. Circumstances that prompted discussions included: problems that can be attributed to the CNS and remained intractable to various interventions, including seizures, recurrent intestinal pseudo-obstruction (hypothalamus and medulla), pain (thalamus), agitation (loss of CNS inhibition), and edema (medulla); increasing symptom burden; and gradual changes in alertness and ability to participate in activities. Details that preceded unexpected deaths will also be reviewed, including several with acute ileus who died following transfer to a hospital. Details will include: the length of time from the redirection of care plans until death, symptom management at the end-of-life, results of tests, prolonged survival following discontinuation of mechanical ventilation, changes in medical nutrition and hydration, and differences in planned vs unexpected deaths. Outcomes in those who survived using the same noninvasive management strategies will be included given the lack of prognostic ability, a time when parents were prepared for their child's potential death, and how parents responded before and after this experience. This is an important session given the lack of prognostic information, placing such individuals at significant risk for invasive testing and interventions, including surgery, at the end of life. Consideration of testable and "fixable" problems versus problems that can be due to the CNS without confirmatory tests will be discussed. This information will be used to outline "tipping points" that can prompt anticipatory discussions with parents and guardians, with suggested language offered.
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Hauer J; Clark C; Jarek H
Journal of Pain and Symptom Management
2018
<a href="http://doi.org/10.1016/j.jpainsymman.2017.12.151" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2017.12.151</a>
Variables influencing end-of-life care in children and adolescents with cancer
Child; Female; Humans; Male; Adult; Withholding Treatment; Resuscitation Orders; adolescent; Preschool; Empirical Approach; Death and Euthanasia; decision making; infant; cause of death; Neoplasms/complications/therapy; location of death; hospice care; home care services; Terminal Care/trends
BACKGROUND: The purpose of this study was to describe the variables influencing end-of-life care in children and adolescents dying of cancer. MATERIALS AND METHODS: Records of 146 children with cancer who died at Children's Hospital were reviewed for demographics, diagnosis, location of death, withdrawal of life support, use of "do not resuscitate" (DNR) orders, and the length of time that those orders were in effect. RESULTS: Ninety-five patients were evaluated. Fifty-nine died of progressive disease and 36 deaths were therapy-related. Sixty-four percent of disease-related deaths occurred at home with support from home care or hospice. Only 10% of all patients died while receiving maximal aggressive support in the intensive care unit. Age, diagnosis (solid tumor vs. leukemia), cause of death, length of last hospital admission, and the duration of DNR orders had a significant correlation with the place of death and referral to and use of hospice. Thirty-five percent of all patients had hospice support. CONCLUSIONS: Most children who die of cancer die because of progressive disease at home with hospice support. Do not resuscitate orders were written for most patients who died. End-of-life decisions are influenced by patient diagnosis, cause of death, and age.
Klopfenstein KJ; Hutchison C; Clark C; Young D; Ruymann FB
Journal Of Pediatric Hematology/oncology
2001
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1097/00043426-200111000-00004" target="_blank" rel="noreferrer">10.1097/00043426-200111000-00004</a>