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End-of-Life Care in the Pediatric Intensive Care Unit Gary D. Ceneviva, MD Division of Pediatric Critical Care Caring for Kids. Objectives • Describe the patterns of childhood death • Illustrate the integration of palliative care into the pediatric intensive care unit • Describe components of the ideal decision making process • Identify key factors that impact decisions to forgo life sustaining treatments (LST) • Describe the process of forgoing LST • Recognize the symptoms of dying children • Identify factors influencing parental grief and subsequent coping Caring for Kids. Epidemiology • Approximately 500,000 children cope with lifethreatening conditions annually in the United States1 • Over 50,000 infants and children die annually in the United States2 1. Himelstein BP et al. N Eng J Med 2004; 350:1752 2. Hoyert DL et al. Pediatrics 2006; 117:168 Caring for Kids. Leading Causes of Infant Death • • • • • • • • • • Congenital & Chromosomal Anomalies Disorders related to SGA & LBW SIDS Maternal Complications of Pregnancy Complications of Placenta, Cord & Membranes Respiratory Distress Accidents Bacterial Sepsis Diseases of the Circulatory System Intrauterine Hypoxia & Birth Asphyxia Martin JA et al. Pediatrics 2005; 115:619 Caring for Kids. Leading Causes of Childhood Death (1- 19 years old) • • • • • • • • • • Accidents (unintentional injuries) Assault (homicide) Malignant Neoplasms Intentional Self Harm (suicide) Congenital & Chromosomal Anomalies Diseases of Heart Chronic Lower Respiratory Diseases Influenza and Pneumonia Septicemia Cerebrovascular Diseases Martin JA et al. Pediatrics 2005; 115:619 Caring for Kids. Epidemiology • 1 in 5 Americans die using intensive care services • Nationally, this translates to approximately 540,000 Americans each year Angus DC et al. Crit Care Med 2004: 32:638 Caring for Kids. Epidemiology Feudtner C et al Pediatrics 2006; 117:e932 Caring for Kids. Angus DC et al. Crit Care Med 2004; 32:638 Caring for Kids. Mode of Death in the Pediatric Intensive Care Unit • The most common mode of death in the pediatric intensive care unit (PICU) is the limitation or withdraw of life sustaining therapy (LST) Vernon DD et al. Crit Care Med 1993; 21:1798 Mink RB et al. Pediatrics 1992; 89:961 Caring for Kids. Caring for Kids. Palliative Care • Comprehensive approach to care that focuses on the treatment of physical, emotional, social, and spiritual symptoms of children with lifethreatening conditions and their families • Can be provided concurrently with curative or life-prolonging care • Goal is to achieve the best quality of life for a child and their families Caring for Kids. End of Life Care • No precise definition • Focuses on preparing for an anticipated death and managing the end stage of a fatal condition Caring for Kids. Contrasting Goals of Intensive Care and Palliative Care Intensive Care • To fight death • To cure • To prolong life at all costs Caring for Kids. Palliative Care • To promote physical, psychological, spiritual, and social comfort • To promote the acceptance of death as an outcome A Comprehensive Model of Palliative Care Disease Modifying Therapy (Curative, Restorative intent) Life Closure Risk Disease Condition Caring for Palliative Care Death & Bereavement Kids. National Hospice Work Group; Adapted from work of the Canadian Palliative Care Association & Frank Ferris, MD Ethical Principles of End of Life Care • Autonomy – Self determination – Accepts the likelihood that different persons may judge benefits differently • Beneficence – Requires that only treatments that are in the child’s best interest be pursued • Nonmaleficence – Requires that harm (physical, social, psychological, spiritual) be avoided Caring for Kids. Decision Making Capacity & Competency • Refers to the ability of a person to make decisions • Involves 3 essential elements – The ability to understand & communicate information relevant to a decision – The ability to reason and deliberate concerning a decision – The ability to apply a set of values to decision AAP Committee on Bioethics Pediatrics 1994; 93:532 Caring for Kids. Decision Making & Decision Making Capacity • Surrogates – Usually the parents – May include other family members or court appointed guardians • Emancipated minor – Definition varies from state to state – Examples include: high school graduates, married, members of the armed forces, pregnant or parents, or those living apart independently from their parents • Mature Minor – Definition also varies among courts and legislatures – > 14 years old assessed to have decision making capacity AAP Committee on Bioethics Pediatrics 1994; 93:532 Caring for Kids. Standards for Decision Making • Substituted Judgment Standard – Surrogates can make inferences about the preferences of previously competent patients – Can be used for children who are emancipated or mature • Best Interest Standard – Serves as the basis for decisions for patients who never achieve decision making capacity – Usually used by surrogates of infants and young children Caring for Kids. Physicians’ Responsibilities & the Decision Making Process • Inform the patient & family when end of life discussions need to occur because treatment no longer confers benefit & should be forgone • Provide the patient & family with adequate information about therapeutic and diagnostic benefits • Elicit questions and ascertain whether or not information and advice is understood • Ascertain the patient’s & family’s personal values and goals of therapy • Provide advice about which option to choose • Documents orders & progress notes in the medical record AAP Committee on Bioethics Pediatrics 1994; 93:532 Caring for Kids. The Ideal Decision Making Process • Is shared between the caregiver team, patient, & family • Reaches a consensus on a medical plan that is in accordance with the values and choices of the patient and family • Begins early during the ICU admission with a multidisciplinary meeting which: – Uses nontechnical language – Allows ample time for questions – Considers the patient’s & family’s personal values and goals of therapy • Is one of negotiation • Is documented Thompson BT et al Crit Care Med 2004; 32:1781 Caring for Kids. Decision Making at the End of Life in the PICU • The attitudes and practices of end of life care vary between and within countries & may be explained by a country’s: – – – – Cultural diversity Religious diversity Philosophical differences Legal & Professional background Devictor DJ et al. Pediatr Crit Care Med 2004; 5:211 Devictor DJ et al. Crit Care Med 2001; 29:1356 Burns JP et al. Crit Care Med 2001; 29:658 Caring for Kids. Decision Making to Forgo LST in French PICUs Devictor DJ et al. Crit Care Med 2001; 29:1356 Caring for Kids. Decision Making in North America Formal meeting called Consensus obtained to forgo LST In first meeting After second meeting Meeting Participants Parents Attending Nurses Residents Social workers Chaplains Caring for Kids. Garros D et al. Pediatrics 2003; 112:e371 100 % 51 % 97 % 100 % 100 % 75 % 53 % 29 % 10 % Clinicians’ Attitudes and Practices Toward End of Life Care • Attitudes and practices vary and may be explained by an individual’s: – – – – – Political or religious affiliation Culture Beliefs or values Profession Experience Burns JP et al. Crit Care Med 2001; 29:658 Randolph AG et al. Pediatrics 1999; 103:e46 Solomon MZ et al. Pediatrics 2005; 116:872 Caring for Kids. Reasons for Clinicians Limiting or Withdrawing LST • • • • • • • • • • No benefit - Imminent death Excessive burden - Unacceptable decrement in quality of life No relational benefit - Survival with severe neurologic dysfunction Diagnosis Acute versus chronic disease Perceived benefit Prognosis Family preference Probability of survival Functional status or Quality of life Caring for Kids. Randolph AG et al. Crit Care Med 1997; 25:435 Levetown M et al. JAMA 1994; 272;1271 Keenan HT et al. Crit Care Med 2000; 28:1590 Factors Influencing Clinicians’ Decisions on the Extent of Life Support to Provide Physicians, % Nurses, % QOL as viewed by the patient 99 99 QOL as viewed by the family 95 96 Patient unlikely to survive 94 91 Potential for neurologically intact survival 81 77 QOL with a chronic disorder 61 73 Fear of litigation or breaking the law 23 32 Financial cost to society 13 33 QOL = Quality of Life Burns et al. Crit Care Med 2001; 29:658 Caring for Kids. Parental Stresses • Ambiguity regarding the parental role – Parents have limited access to their child – Parents perceive not being in control (role as a protector & provider is threatened) • The child’s clinical condition & relative stability • The child’s distress or pain • Environmental factors Morrison AL Pediatr Crit Care Med 2004; 5:585 Meyer EC et al. Crit Care Med 2002; 30:226 Caring for Kids. Factors Influencing Parents’ Decisions to Forgo LST • The parents previous experience with death & end of life decision making for others • Their personal observations of their child’s suffering • Their perceptions of their child’s will to survive • Their need to protect & advocate for their child • The family’s financial resources Sharman M et al. Pediatr Crit Care Med 2005; 6:513 Caring for Kids. Factors Important to Parents in End of Life Decision Making • • • • Physician recommendations Diagnosis Expected neurological recovery Degree of pain and suffering Meert KL et al. Pediatr Crit Care 2000; 1:179 Caring for Kids. Factors Important to Parents’ Decisions to Forgo LST • • • • • • • • • • • • Quality of life Likelihood of improvement Pain or discomfort Unlikely to survive hospitalization What I believe my child would have wanted Information the staff provided Religious/spiritual beliefs Child’s appearance or behavior Advice of hospital staff Attitudes of hospital staff Advice of family and friends Financial costs Caring for Meyer EC et al. Crit Care Med 2002; 30:226 Kids. Parental Satisfaction with End of Life Decision Making Adequacy of Information % Parents who Agree My child’s condition 86.5 My child’s treatment options 78.8 My child’s chances for survival 71.2 Pros/Cons of discontinuing LST 67.3 Pros/Cons of continuing therapy 65.4 Meyer EC et al. Crit Care Med 2002; 30:226 Caring for Kids. Parental Satisfaction with End of Life Decision Making “Physician recommendations, review of options, and joint formulation of a plan helped parents gain a sense of control over their situation.” Sharman M et al Crit Care Med 2005; 6:513 Caring for Kids. Life Sustaining Therapies • May be withheld or withdrawn (forgone) – Ethically, there is no difference between withholding or withdrawing a therapy • May be removed simultaneously or sequentially – Usually LST are withdrawn simultaneously • Most deaths will occur within 24 hours following withdraw of LST Burns et al. Crit Care Med 2000; 28:3060 Zawistowski C et al. Pediatr Crit Care Med 2004; 5:216 Caring for Kids. Types of LST Forgone • • • • • • • • Mechanical Ventilation Vasoactive Infusions Renal Replacement Therapies Invasive Catheters Extracorporeal Membrane Oxygenation Antibiotics Intravenous Fluids Feeds Caring for Kids. Mechanical Ventilation • Most common LST withdrawn • Pediatricians are more likely to withdraw mechanical ventilation than surgeons or anesthesiologists • Methods of withdraw include: – Terminal Extubation – Terminal Wean Burns JP et al. Crit Care Med 2000; 28:3060 Truog RD et al. Crit Care Med 2001; 29:2332 Zawistowski et al. Pediatr Crit Care 2004; 5:216 Caring for Kids. Terminal Extubation • Endotracheal tube is removed usually after administration of sedatives or analgesics • Commonly used by pediatricians & internists • Advantages: – Does not prolong the dying process – Allows patient to be free of the endotracheal tube – Can not be confused with a therapeutic wean Truog RD et al. Crit Care Med 2001; 29:2332 Burns JP et al. Crit Care Med 2000; 28:3060 Zawistowski et al. Pediatr Crit Care 2004; 5:216 Caring for Kids. Terminal Wean • Oxygen and/or the ventilator rate are weaned over a variable amount of time • Leads to progressive hypoxemia and hypercarbia • Advantages: – – – – No upper airway obstruction develops Symptoms of air hunger do not develop May be perceived as being less active than terminal extubation May be perceived by families as an attempt to have the patient successfully survive separation from the ventilator Truog RD et al. Crit Care Med 2001; 29:2332 Caring for Kids. Pain and Symptom Management as LST is Withdrawn • Sedatives and/or analgesics are frequently administered after withdraw of LST • Comatose patients are less likely to receive analgesics or sedatives Burns JP et al. Crit Care Med 2000; 28:3060 Zawistowski CA et al. Pediatr Crit Care Med 2004; 5:216 Caring for Kids. Analgesia & Sedation During Withdrawal of LST • Mean doses of analgesics or sedatives are usually increased as LST is withdrawn • Some research has shown no relationship between the dose of morphine used and the time of death after ventilator withdrawal Burns JP et al. Crit Care Med 2000; 28:3060 Partridge JC et al. Pediatrics 1997; 99:76 Caring for Kids. Clinicians’ Rationale for Analgesia or Sedation During Withdrawal of LST • • • • • Decrease pain Decrease anxiety Decrease air hunger Comfort the family Hasten death Burns JP et al. Crit Care Med 2000; 28:3060 Caring for Kids. Principle of Double Effect • Clinicians can give sedatives and analgesics to dying children to relieve suffering • These medications may result in a hastening of death • However, the intention is to relieve the child’s pain and suffering and not to cause death Solomon MZ et al Pediatrics 2005; 116:872 Quill TE et al. NEJM 1997; 337:1768 Caring for Kids. Analgesics & Sedatives Commonly Used During Withdrawal of LST in the PICU Analgesics • Opioids Sedatives • Benzodiazepines – Morphine – Fentanyl – Meperidine – Midazolam – Lorazepam – Diazepam • Barbiturates Burns JP et al. Crit Care Med 2000; 28:3060 Zawistowski CA et al. Pediatr Crit Care Med 2004; 5:216 Caring for Kids. – Pentobarbital – Thiopental Analgesics for End of Life Care in the ICU Caring for Kids. Sedatives for End of Life Care in the ICU Caring for Kids. Clinicians’ Satisfaction with Pain Control During Withdrawal of LST • In most cases, both nurses & physicians agree that the analgesics & sedatives given were sufficient to ensure patient comfort • In 13% of the cases, nurses thought the amount of analgesia & sedation was inadequate Burns JP et al. Crit Care Med 2000; 28:3060 Caring for Kids. Parental Satisfaction with Pain Control Adequacy of Pain Control – 55% of parents reported that their child was comfortable in his or her final days – 25% were neutral – 20% disagreed Meyer EC et al. Crit Care Med 2002; 30:226 Caring for Kids. Neuromuscular Blockade Agents (NMBA) • NMBA possess no sedative or analgesic activity • NMBA may be required to facilitate mechanical ventilation • Dilemmas exist regarding the withdrawal of ventilation & NMB induced paralysis Truog RD et al. Crit Care Med 2001; 29:2332 Caring for Kids. Neuromuscular Blockade Agents (NMBA) • Approximately 1/3 of pediatric intensivists & over 85% of other pediatric subspecialists were either uncertain or agreed that it was appropriate to provide NMBA with analgesia before withdrawing a ventilator in a child whose death was imminent Solomon MZ et al. Pediatrics 2005; 116:872 Caring for Kids. Guidelines for the Use of NMBA at the Time of Withdrawal of Ventilation • NMBA should never be introduced when mechanical ventilation is being withdrawn • In patients who are already receiving NMBA, neuromuscular function should be restored before the life support is withdrawn. Troug RD et al. New Engl J Med 2000; 342:582 Caring for Kids. Guidelines for the Use of NMBA at the Time of Withdrawal of Ventilation • The only exception to this rule should be: – When death is expected to be both rapid and certain after the removal of ventilation, and – When the burdens to the child & family of waiting for the neuromuscular blockade to diminish to a reversible level exceed the benefits of allowing better assessment of the patient's comfort and the possibility of interaction with loved ones. Troug RD et al. New Engl J Med 2000; 342:582 Caring for Kids. Symptoms & Suffering of Dying Children Caring for Kids. Wolfe et al. NEJM 2000; 342:326 Symptoms & Suffering of Dying Children Caring for Wolfe et al. NEJM 2000; 342:326 Kids. Caring for Kids. Wolfe et al. NEJM 2000; 342:326 Symptoms of Dying Children Caring for Kids.Drake R et al J Pain Symptom Manage 2003; 26:594 Parental Grief • Grieving is a gradual process passing through various phases • Early grief – Characterized by disbelief, confusion, and unreality • Subsequent phases – Overlap – Include periods of intense emotional release, physical and mental exhaustion, restructuring of personal identity and eventual beginning of life without the child Meert KL et al. Pediatr Crit Care Med 2001; 2:324 Caring for Kids. Factors Influencing Parental Grief • The ability to cope with loss may be influenced by the parents’ – – – – – Personality traits Cognitive skills Social supports Religious beliefs Physical health Meert KL et al. Pediatr Crit Care Med 2001; 2:324 Caring for Kids. Parental Grief & Coping after Death of a Child in the PICU • Acute versus Chronic Disease – Parents whose child died acutely had greater intensity of early and longterm grief than those whose child died of chronic illness • Quality of Care – The emotional attitudes of staff influenced the intensity of early and long-term grief – The adequacy of information provided to parents predicted long-term grief • Parents’ Coping Ability – Parents’ physical coping resources (physical well being) predicted the intensity of early grief – Parents’ cognitive coping resources (self worth) predicted the intensity of long term grief Meert KL et al. Pediatr Crit Care Med 2001; 2:324 Caring for Kids. Spiritual Needs of Bereaved Parents of a Child in the PICU • The most prominent parental spiritual need was maintaining connection with their child before, during, & after their death • Parents maintained connection during the child’s last hospitalization through death by physical presence • Parents maintained connection after death through memories, mementos, memorials, and altruistic acts Caring for Meert KL et al. Pediatr Crit Care Med 2005; 6:420 Kids. Improving the Quality of End-of-Life Care in the PICU Parents’ priorities and recommendations include: – – – – – – Honest and complete information Ready access to staff Communication and coordination of care Emotional expression and support by staff Preservation of the integrity of the parent-child relationship Faith Meyer EC et al. Pediatrics 2006; 117:649 Caring for Kids. Summary • Most infants & childhood deaths occur within the PICU usually after a decision to forgo LST • Palliative and intensive care can coexist & are present to some degree • The ideal decision making process is one of negotiation between the caregiver, child, & surrogates and reaches a consensus that is in accordance with the values and choices of the patient and family Caring for Kids. Summary • Quality of life and likelihood of survival are important factors impacting the decision of both parents and clinicians to forgo LST • The location of death impacts the number and types of symptoms of dying children • Many children are reported to suffer in their last days of life • Parental grief and coping are impacted by physical well being, self worth, presence, acuity of their child’s illness, and the emotional attitudes of staff Caring for Kids.