Rogers Textbook of Pediatric Intensive Care

SECTION IV ■ ETHICAL AND PALLIATIVE CONCERNS IN THE CARE OF THE CRITICALLY ILL

CHAPTER 14 ■ PALLIATIVE AND END-OF LIFE CARE IN THE PEDIATRIC INTENSIVE CARE UNIT WYNNE E. MORRISON, AMARILIS A. MARTIN, PATRICIA MIRANDA DO LAGO, JEFFERSON PEDRO PIVA, AND KATHLEEN L. MEERT

KEY POINTS

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● INTRODUCTION More than 40 000 children die every year in the United States and more than seven million children worldwide. 1,2 Estimates of how many of these children die in intensive care units (ICUs) vary widely by country, but in most reports, the majority of pediatric deaths occur in the hospital, ranging from 50% to more than 70%. 3-6 Caring for dying children and supporting their families is therefore a common experience for pediatric intensivists and a core competency of pediatric critical care. Necessary skills include the support of family decision-making, navigation of the ethical issues involved, management of the application and removal of technologic support, intensive management of pain and other symptoms at the end of life, and care for the family during and after a death. Pediatric palliative care is “an active approach to the care of children and young people with life-limiting conditions, embracing physical, emotional, social and spiritual elements through death and beyond.” 3 Because of the location of many pediatric deaths, it is often the ICU team that provides much of this care. In addition to caring for children who are clearly dying, pediatric intensivists will also manage complex care for many children living with chronic conditions. As support ive technologies have improved over the past several decades, many children are living with conditions that would have been 1 Currently, most children who die in hospital do so in the intensive care unit (ICU). Skill in symptom management and compassionate care of patients and their families at the end of a child’s life are core competencies of pediatric critical care. Collaboration with consultative palliative care teams and home hospice services may be helpful in the care of some patients. 2 Pharmacologic management of symptoms at the end of life is important. Appropriately titrated doses are ethi cally justifiable and should rarely hasten death. Opioids and sedatives may both be helpful. 3 Withholding or withdrawing ICU interventions such as cardiopulmonary resuscitation and mechanical ventila tion is often indicated at the end of life. It is important to manage symptoms appropriately when doing so, have clear communications with families, and be supportive at the time of decision-making. ●

universally fatal in the past. 5,7,8 Examples include congenital heart disease, chronic lung disease of prematurity, and genetic disorders that lead to severe neuromuscular weakness, meta bolic abnormalities, or developmental disabilities. The pro portion of pediatric critical care patients with such conditions is increasing over time even as mortality rates are falling. 8,9 These children may have an impaired level of functioning at baseline with episodic deterioration, leading to recurrent ICU admissions. In such cases, parents may need help navigating how aggressive to be with potentially life-saving technology, especially if concerns arise that such technology only prolongs suffering or provides a poor quality of life. Depending on country, 27.7%-75.3% of pediatric deaths are attributed to children with chronic complex conditions, and most of these patients die in the hospital, often in the ICU. 6,10-14 It is impor tant to focus on quality of life and management of pain and suffering whether curative, life-prolonging, or palliative care continues. End-of-life care in pediatrics differs from what typically occurs in adult medicine. For adult patients, hospice refer rals often occur only in the last few days or weeks of life. 15 For many pediatric illnesses, life expectancy and develop mental prognosis are often uncertain, 16,17 and pediatric pal liative care teams frequently follow patients for months or even years following referral. 18 It can certainly be useful for palliative care teams to meet patients earlier in the course of 6 Pediatric palliative care is a rapidly growing specialty that involves the care of many children with potentially life-limiting illnesses, not just those who are dying. Sys tems of care, training, and reimbursement should con tinue to be developed in order to allow access to such support for children and families worldwide. 4 At the time of a child’s death, families report a need to remain close to their child and for honest and clear infor mation from the team. Families may have cultural or reli gious traditions, and the team should assess such needs on an individual basis. Most families appreciate follow-up from the medical team after a child’s death. 5 Caring for dying children and their families can be both distressing and rewarding for the medical team. Good communication regarding the plan of care is essential and should involve the multidisciplinary staff as well as consultants.

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