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Pediatric Palliative Care Gary D. Ceneviva, MD Penn State Children’s Hospital Division of Pediatric Critical Care Objectives Define hospice, palliative, and end-of-life care Illustrate how principles of palliative care can be integrated into the care of children Identify conditions appropriate for palliative care Describe unique features of pediatric palliative care which differ from adult palliative care Epidemiology Approximately 500,000 children cope with life-threatening conditions annually in the United States1 Over 50,000 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 Concepts Hospice Palliative Care End of Life Care Hospice Describes a philosophy, program, or site of care A philosophy of care which addresses the physical, social, emotional, and spiritual needs of children with life-threatening conditions & their families from the time of diagnosis, through bereavement, if cure is not attained Palliative Care Comprehensive approach to care that focuses on the treatment of physical, emotional, social, and spiritual symptoms of children with life-threatening 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 End of Life Care No precise definition Focuses on preparing for an anticipated death and managing the end stage of a fatal condition A Comprehensive Model of Palliative Care Disease Modifying Therapy (Curative, Restorative intent) Life Closure Risk Disease Condition Palliative Care Death & Bereavement National Hospice Work Group; Adapted from work of the Canadian Palliative Care Association & Frank Ferris, MD Conditions Appropriate for Palliative Care Conditions for which curative treatment is possible but may fail Conditions requiring long-term treatment aimed at maintaining the quality of life Progressive conditions in which treatment is exclusively palliative after diagnosis Conditions involving severe, nonprogressive disability Himelstein BP et al. N Engl J Med 2004;350:1752 Conditions Appropriate for Palliative Care Conditions for which curative treatment is possible but may fail – Advanced or progressive cancer – Cancer with a poor prognosis – Complex and severe congenital or acquired heart disease Himelstein BP et al. N Engl J Med 2004; 350:1752 Conditions Appropriate for Palliative Care Conditions requiring intensive long-term treatment aimed at maintaining the quality of life – – – – – HIV or severe immunodeficiencies Cystic Fibrosis Severe gastrointestinal disorders Muscular dystrophy Chronic or severe respiratory failure Himelstein BP et al. N Engl J Med 2004; 350:1752 Conditions Appropriate for Palliative Care Progressive conditions in which treatment is exclusively palliative after diagnosis – Metabolic disorders – Chromosomal anomalies such as trisomy 13 or 18 – Severe forms of osteogenesis imperfecta Himelstein BP et al. N Engl J Med 2004; 350:1752 Conditions Appropriate for Palliative Care Irreversible but non-progressive conditions causing severe disability leading to susceptibility to health complications and likelihood of premature death – Hypoxic Brain Injury – Severe Cerebral Palsy with recurrent infection or difficult to control symptoms – Severe neurologic sequelae of infectious disease – Holoprosencephaly or other severe brain malformations Himelstein BP et al. N Engl J Med 2004; 350:1752 Distinctive Features of Pediatric Palliative Care The nature of life-threatening conditions & causes of death in children and adolescents The uncertain prognosis of some life-threatening conditions in childhood The nature of concerns and needs of dying infants, children, & adolescents Distinctive ways in which infants, children, & adolescents express their concerns and needs Papadatou D et al. Education and Training Curriculum for Pediatric Palliative Care. NHPCO 2003 Distinctive Features of Pediatric Palliative Care Unique issues of decision making, as well as ethical and legal issues, of self determination The role of significant others in patient care Populations and individuals affected by a death Distinctive aspects of the nature and duration of bereavement following death Effect of the dying process and death of a child on health care professionals and care providers Papadatou D et al. Education and Training Curriculum for Pediatric Palliative Care. NHPCO 2003 Distinctive Features of Pediatric Palliative Care The nature of life-threatening conditions & causes of death in children and adolescents – Life threatening conditions & causes of death Differ significantly from those typical of adult populations Vary significantly within childhood and adolescence according to age 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 Bacteria Sepsis Diseases of the Circulatory System Intrauterine Hypoxia & Birth Asphyxia Martin JA et al. Pediatrics 2005; 115:619 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 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 Epidemiology Feudtner C et al Pediatrics 2006; 117:e932 Angus DC et al. Crit Care Med 2004; 32:638 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 Distinctive Features of Pediatric Palliative Care The unusual features of some lifethreatening conditions in childhood – Some diseases are very rare and have an uncertain prognosis Distinctive Features of Pediatric Palliative Care The nature of concerns and needs of seriously ill or dying infants, children, & adolescents – Infants, children, and adolescents have distinctive concerns and needs based on their developmental circumstances Development of Death Concepts Age (yr) Characteristics Death Concepts 0-2 Has sensory & motor relationships with environment; Limited language skills; Object permanence; May sense something is wrong None 2-6 Uses Magical & irreversible thinking; Egocentric; Uses symbolic play, Developing language skills Believes death is temporary, reversible, caused by thoughts, and not personalized 6-12 Concrete thoughts Develops adult concepts of death; Understands death can be personal; Interested in physiology & details of death 12-18 General thinking; Reality becomes objective; Self-reflective; Body image & self esteem important Explores nonphysical explanations Distinctive Features of Pediatric Palliative Care Distinctive ways in which infants, children, & adolescents express their concerns, needs, beliefs, and feelings Development of Death Concepts Age (yr) Characteristics Death Concepts 0-2 Has sensory & motor relationships with environment; Limited language skills; Object permanence; May sense something is wrong None 2-6 Uses Magical & irreversible thinking; Egocentric; Uses symbolic play, Developing language skills Believes death is temporary, reversible, caused by thoughts, and not personalized 6-12 Concrete thoughts Develops adult concepts of death; Understands death can be personal; Interested in physiology & details of death 12-18 General thinking; Reality becomes objective; Self-reflective; Body image & self esteem important Explores nonphysical explanations Distinctive Features of Pediatric Palliative Care Unique issues of decision making, as well as ethical and legal issues, of self determination 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 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 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 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 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 Document orders & progress notes in the medical record AAP Committee on Bioethics Pediatrics 1994; 93:532 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 Parental Satisfaction with End of Life Decision Making “Physician recommendations, review of options, and joint formulation of a plan help parents gain a sense of control over their situation.” Sharman M et al Crit Care Med 2005; 6:513 Distinctive Features of Pediatric Palliative Care The role and involvement of significant others in patient care – Typically parents assume a primary, active role in meeting the needs of their child 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 Distinctive Features of Pediatric Palliative Care Populations and individuals affected by a death – Many different generations (parents, grandparents, siblings, peers) are affected – Each individual may require a different form of support especially when childhood death is perceived to reverse or violate the natural order of life events Distinctive Features of Pediatric Palliative Care Distinctive aspects of the nature and duration of bereavement following death – The mourning process of parents and sibling presents unique characteristics, is long lasting, and may have the potential to lead to complications 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 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 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 long- term 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 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 Meert KL et al. Pediatr Crit Care Med 2005; 6:420 Distinctive Features of Pediatric Palliative Care Effect of the dying process and death of a child on health care professionals and care providers – Challenges providers to develop a personal philosophy about life and death in order to cope