End-of-Life Care for Hospitalized Children

https://doi.org/10.1016/j.pcl.2014.04.012Get rights and content

Section snippets

Key points

  • Caring for hospitalized children at the end of life (EOL) requires an interdisciplinary approach to address the complex physical, psychosocial, and spiritual needs of patients and families.

  • Using a standard operating procedure at EOL can help ensure that children who die in the hospital and their families receive high-quality care that addresses their physical, psychosocial, and spiritual needs.

  • Using a checklist to address these areas and assigning tasks to members of the interdisciplinary team

Medical Decision Making at the EOL

When it is anticipated that a child or infant will die in the inpatient setting, it is helpful to engage in advance care–planning discussions to facilitate decision making about issues that commonly arise at the EOL. The issues that should be addressed include preferences for limiting the scope of treatment from advanced life-sustaining therapies (eg, dialysis or mechanical ventilation) to basic noninvasive therapies (eg, antibiotics, artificial nutrient, or hydration); preferences for organ

Cultural, Spiritual, and Religious Concerns

In the ideal setting, the end of a child’s life occurs in the most comfortable manner possible, allowing the family and child to be together in their chosen place. More commonly, this ideal scenario is complicated by continuing advances in medical regimens that, although introduced with the hope of restoring function, may ultimately expose a child to overly intensive treatments or interventions aiming to extend life within the last days or weeks of life. Such treatment often occurs in the

Ethics Consultation

Despite the earlier integration of palliative care and emphasis on advance care planning, the process of caring for children at EOL is not always without conflict. Occasionally, conflict may occur between family members, between staff, or between family members and staff about the goals of care or which treatments are in the best interest of the child. Conflicts may be highly emotional and result in moral distress. Often these conflicts are the result of a breakdown in communication rather than

Recommendations

Integrating the clinical, psychosocial, and spiritual concerns at the EOL into a standard operating procedure (SOP), which is based on quality standards established by the NQF,5 can help ensure that all of these domains are addressed during inpatient deaths. At the time of imminent death, the medical staff should first recognize that the child is dying. The following automatic triggers can help identify when the SOP should be activated:

  • Admittance to the hospital for symptom management at the EOL

First page preview

First page preview
Click to open first page preview

References (58)

  • Committee on Bioethics (American Academy of Pediatrics)

    Guidelines on foregoing life-sustaining medical treatment

    Pediatrics

    (1994)
  • L. Wienr et al.

    Allowing adolescent and young adults to plan their end-of-life care

    Pediatrics

    (2012)
  • N. Contro et al.

    Family perspectives on the quality of pediatric palliative care

    Arch Pediatr Adolesc Med

    (2002)
  • J.W. Mack et al.

    Parent and physician perspective on quality of care at the end of life in children with cancer

    J Clin Oncol

    (2005)
  • A. Goldman et al.

    Palliative care for children

    (2012)
  • Clinical practice guidelines for quality palliative care

    (2013)
  • P.S. Hinds et al.

    Key factors affecting dying children and their families

    J Palliat Med

    (2005)
  • National Comprehensive Cancer Network guidelines for supportive care. Available at:...
  • D. Levine et al.

    Best practices for pediatric palliative cancer care: a primer for clinical providers

    J Support Oncol

    (2013)
  • M.P. Pritchard et al.

    Cancer-related symptoms most concerning to parents during the last week and last day of their child’s life

    Pediatrics

    (2008)
  • J. Wolfe et al.

    Symptoms and suffering at the end of life in children with cancer

    N Engl J Med

    (2000)
  • A. Goldman et al.

    Symptoms in children/young people with progressive malignant disease: United Kingdom Children’s Cancer Study Group/Paediatric Oncology Nurses Forum survey

    Pediatrics

    (2006)
  • R. Srouji et al.

    Pain in children: assessment and non-pharmacological management

    Int J Pediatr

    (2010)
  • C.B. Berde et al.

    Analgesics for the treatment of pain in children

    N Engl J Med

    (2002)
  • WHO guidelines on the pharmacological treatment of persisting pain in children with medical illnesses. 2014. Available...
  • M. Tremlett et al.

    Pro-con debate: is codeine a drug that still has a useful role in pediatric practice?

    Paediatr Anaesth

    (2010)
  • D.L. Anghelescu et al.

    Pediatric palliative sedation therapy with propofol: recommendations based on experience in children with terminal cancer

    J Palliat Med

    (2012)
  • Cited by (25)

    • Palliative Care?! But This Child's Not Dying: The Burgeoning Partnership Between Pediatric Cardiology and Palliative Care

      2020, Canadian Journal of Cardiology
      Citation Excerpt :

      The overall approach to pain management at the end of life in cardiac patients is similar to other cohorts: A blend of nonpharmacologic and pharmacologic interventions is used. Johnson et al. published a comprehensive review on end-of-life care for hospitalized children that provides suggested dosing for a variety of medications that treat pain.38 That being said, opioids remain the mainstay for pain management at the end of life for cardiac patients because they can be given by a variety of routes and titrated to produce the desired effect.

    • Predictors of Late Palliative Care Referral in Children With Cancer

      2018, Journal of Pain and Symptom Management
      Citation Excerpt :

      Cancer is the leading cause of death by disease among children in the U.S. Each year, approximately 1 in 285 children are diagnosed with cancer, and 1 in 5 children with cancer die from their disease.1 Children with cancer and their families confront extraordinary physical, psychological, social, and spiritual difficulties throughout the illness trajectory and extending into bereavement.2–15 Fortunately, integration of palliative care (PC) into routine cancer management has been associated with significant improvements in physical and emotional symptoms for patients,5,16 quality of life (QOL) for children and families,17–20 and mitigation of complicated grief for families after the death of a child.21

    • End-of-Life and Bereavement Care in Pediatric Intensive Care Units

      2017, Pediatric Clinics of North America
      Citation Excerpt :

      PICU clinicians should begin the process of symptom management and preparedness by first educating families on the anticipated physical symptoms associated with EOL and the potential therapies. Parents should be given a platform to express their concerns and to identify their unique preferences35 and should be reassured that relieving their child’s pain and suffering is a top priority of care.53 Although parents of dying children will largely be focused on the needs of their child, they themselves are at risk for physical and mental health issues.

    • Palliative care: The experience in paediatrics

      2015, Gaceta Mexicana de Oncologia
    View all citing articles on Scopus
    View full text