Loss and Bereavement

1. Loss and Bereavement 6th Neonatal Conference Hot Topics in Neonatal Medicine February 23, 2011 Deborah Campbell, MD, FAAP

2. Disclosures • In the past 12 months, I have not had any significant financial interest or relationship with the manufacturers of the products or providers of the services that will be discussed in my presentation. • This presentation will not include discussion of pharmaceuticals or devices that have not been approved by the FDA Science at the heart of medicine

3. Objectives • Identify factors contributing to neonatal mortality • Discuss the concept of integrative care • Describe components of perinatal and neonatal palliative and end-of-life care • Outline strategies helpful in supporting families and staff • Describe the Science at the heart of medicine

4. Why focus on perinatal bereavement and the impact of a perinatal loss? • Worldwide 8.1 million children under 5 years of age died in 2009 • 41% (3.57 million) were neonates <28 days of age • Prematurity • Birth asphyxia • Infection/sepsis • Congenital anomalies • Tetanus • An additional 3 million babies are stillborn • 25% (750,000) of these infants are actually born alive, but fail to breathe and die 75% Science at the heart of medicine

5. Infant Mortality Worldwide Science at the heart of medicine

6. Progress in Achieving Millennium Development Goal 4: Reduce by 2/3, between 1990 and 2015, the under-5 mortality rate Science at the heart of medicine

7. Trends in Under 5 Mortality 1970-2005 Science at the heart of medicine

8. Under-5 Child Mortality 1990 v. 2008 Science at the heart of medicine

9. Middle East and North Africa: Infant Mortality Rate per 1,000 Live Births Science at the heart of medicine

10. Challenges Associated with Modern Perinatal Care Science at the heart of medicine

11. Death and the Perinatal Period • 800,000 Each year in the US, nearly 900,000 families are affected by perinatal loss • Miscarriages • 33,000 stillbirths • 17,000-18,000 neonatal deaths • About 50,000 children die annually in the US • 85% are in an ICU • 1/3 die in < 28 days • Half before their 1st birthday • Many more live with life-limiting or life-threatening conditions • Complex chronic conditions of childhood • Approximately 1 million children Science at the heart of medicine

12. Spectrum of Advances in Perinatal Care • Prenatal diagnosis • Termination • Perinatal palliative-hospice care • Fetal intervention • Neonatal intervention • Assisted reproductive technologies (ART) • Higher-order multiples • Selective reduction • Maternal interventions • Cerclage • 17-OH Progesterone • Amnioinfusion • Fetal monitoring • Antenatal steroids • Tocolysis • Fetal interventions

13. What kinds of pregnancies are involved? • Women w/ recurrent losses • Women w/ multifetal pregnancies • Women affected by genetic or metabolic diseases themselves • Women carrying a fetus with: • Congenital heart disease • Complicated birth-defect syndromes • Anhydramnios, anencephaly, holoprosencephaly, hydrops, thanatophoric/campomelic dwarfism, osteogenesis imperfecta • Genetic or metabolic disease • Extremely low birth weight or extremely low gestation fetus at the threshold of viability Science at the heart of medicine

14. Fetal Interventions: Experimentation versus “Standard of Care” • Twin-to-twin transfusion syndrome • Laser ablation • Hemolytic disease • In utero transfusion • Fetal surgery • Meningomyelocele • Congenital diaphragmatic hernia • Bladder outlet obstruction • Pulmonary hypoplasia • Congenital heart disease • Aortic and pulmonary valve obstructions (hypoplastic R/L heart) • Delivery room – EXIT procedure

15. Recent Innovations NICU Care • Respiratory distress syndrome • Surfactant therapy • Ventilation strategies • Vitamin A • Postnatal steroids • E-U growth restriction • Early aggressive nutrition • Protein (lean body mass) • Post-discharge nutrition • Breastmilk* • Persistent pulmonary hypertension of newborn • Inhaled nitric oxide • Extracorporeal membrane oxygenation (ECMO, “baby-bypass”) • Sildenafil (Viagra) • Neonatal encephalopathy (hypoxic-ischemic encephalopathy) • Therapeutic hypothermia • Whole body/head cooling

16. Who are the babies who may warrant palliative care? Carter & Bhatia, 2001; Moro, et al., 2006; Romesberg, 2007) • Full term and late preterm infants with acute illness and extremely complex neonatal courses • Babies with lethal or complex congenital malformations not immediately correctable • Premature infants • Physically normal • Health issues a result of their preterm birth

17. Full term and late preterm infants with acute illness Lantos and Meadow, Neonatal Bioethics, 2006 • Diagnosis and treatment need to completed quickly • Time or need for discussion is typically limited • Medical indication for treatment defines the moral obligation for treatment • Challenges arise when: • Treatment is only partially successful • Long term complications occur • Questions ensue related to quality of life and relative benefits and burdens of continued treatment

18. Babies with congenital malformations that are not immediately correctable Lantos and Meadow, Neonatal Bioethics, 2006 • Ethical issue: • Whether to provide life-sustaining intensive care and/or surgical correction that will treat or ameliorate one problem, but not the underlying congenital condition • The dilemmas: • The underlying congenital condition (syndrome) cannot be cured • Down Syndrome, spina bifida • Treatment of the life-threatening medical problem is feasible and generally successful • Successful treatment will still leave the infant with significant impairments • Without early intervention, death is ensured • Focus ethical discussion: • Quality of life rather than prognosis (chance for survival)

19. Complications of Extreme Preterm Birth Impacting Neurodevelopmental Outcomes • Chronic lung disease - bronchopulmonary dysplasia • Infection - sepsis • Necrotizing enterocolitis • Intraventricular hemorrhage • Hydrocephalus • Retinopathy of prematurity • Threshold disease • Extrauterine growth restriction • Early weight gain • Early head (brain) growth • (Longterm risks metabolic syndrome)

20. Extremely Premature Infants (< 32 weeks' gestation) Lantos and Meadow, Neonatal Bioethics, 2006 • The dilemma – a spectrum of outcomes is possible: • Prematurity is both an acute crisis and chronic condition • Acute crisis requires immediate/emergency responses to address acute medical problems • However, at the time therapies are initiated, the infant’s overall (long term) prognosis is uncertain • For any given extremely preterm baby there are a wide range of potential outcomes – the specific outcome for an individual baby cannot easily be predicted (“probabilistic estimates”) • Early death • Late death • Survival with severe, moderate, mild or no health and/or developmental disability

21. Key question: What degree of certainty is necessary before various moral thresholds can be crossed? Lantos and Meadow, Neonatal Bioethics, 2006 • When is treatment morally and ethically required? • Prognosis is “good enough” that the parents are not permitted to refuse treatment • Babies > 25 weeks’ gestation • Treatment decision driven by the infant’s best interest • When is treatment morally and legally optional? • Probabilistic (likely) outcomes are poor • Low likelihood of survival, high likelihood of significant impairment • Babies between 23 (?22) and 25 weeks’ gestation • Parents permitted to decide to initiate, continue/discontinue treatment • When is treatment not required? • Survival unprecedented or treatment is futile (< 23 weeks [?22]) • This frame work represents a starting point for decision making discussion • Over time the prognosis is refined and perspectives evolve

22. Moral Psychology of Decision Making • Withdrawing v. withholding treatment • Ethicists and legal scholars agree that there is no moral or legal difference between withholding or withdrawing life-sustaining treatment • Doctors, nurses, patients and family members disagree with ethicists and the law– striking emotional differences between these approaches to forgoing therapy • Emotionally easier to withhold a treatment than to withdraw treatment • Physicians feel it is easier to withdraw treatment if death will ensue quickly • Limited data on parent views about withholding care or withdrawing care • Changing perspectives – race/ethnicity, belief systems (“miracles”) • Tension around the “trial of therapy” approach • Some families fear over-treatment • Some parents view the decision process as asking them to “kill their baby” • HCPs fear litigation • Shared decision making is optimal, but complex; requires willing participation – one size does not fit all • Role of religion/spirituality Lantos and Meadow, Neonatal Bioethics, 2006

23. Characteristics of Care in the NICU • Inherent hope and anticipation • Expectation of miracles • Intensive and invasive care • Neonatal care as an “experiment” • Implications of prenatal diagnoses and postnatal iatrogenic sequelae • “The NICU: Tomorrow’s PICU Patients Today” • Inconceivable not to “do everything” • What does “everything” mean? • Difficult discussions often complicated by misunderstandings, “hints” and evasions • Environment of the ICU • Personnel • Medical, nursing and other NICU staff - “technicians” • Parents as “visitors” • Prevailing philosophy is “Treat and Cure” • Risk adverse v. risk seeking • New (untested) therapies and advances in care (survival) often the result of taking a “chance” • Often invasive and painful • Rarely private and quiet • Pressure of time • Support Slide adapted from B. Carter, MD

24. Context: The field of Neonatal Medicine is the result of medical innovation that required complex infrastructures to elucidate appropriate treatments, to test them and provide them. • Rapid scientific and technological innovation (experimental treatments) • Questions regarding safety and efficacy are not always framed or answered before these treatments become the “standard of care” • Created scientific, legal and ethical challenges to conventional wisdom • Conundrum: protection from risk slows progress/innovation • Balance successes with tragic outcomes Learning to ask the right questions Lantos and Meadow, Neonatal Bioethics, 2006

25. Perinatal Palliative Care Science at the heart of medicine

26. Definition of Terms • Palliative care • Encompasses a broad scope of services from a point early in the illness, ideally close to the time of diagnosis of a life threatening condition • Seeks to prevent or relieve the physical and emotional distress produced by a life-threatening medical condition or its treatment • Help patients and families live as normally as possible • Provide them with timely and accurate information and support in decision making • Enhances quality of life in life-limiting illness Science at the heart of medicine

27. Definition of Terms • End-of-life (EOL) Care • Type of palliative care that is focused on aggressive control of symptoms, maintenance of comfort and psychological and spiritual support in the period before an anticipated death • Hospice • Combined philosophy of care, program of care and site of care • Shares priorities of EOL care, but traditional restricted to patients willing to forgo all resuscitative measures Science at the heart of medicine

28. Definition of Terms • Grief • Feelings and behaviors in response to loss • Complicated grief may be delayed, inhibited or chronic • Anticipatory grief • Occurs in advance of the loss • Bereavement • Refers to grief and other feelings that occur as a result of loss through death • Mourning • Social rituals and expressions that take place during the course of bereavement Science at the heart of medicine

29. WHO Definition: Palliative Care for Children Palliative care for children represents a special, albeit closely related field to adult palliative care (WHO; 1998a): • Palliative care for children is the active total care of the child's body, mind and spirit, and also involves giving support to the family • It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease. • Health providers must evaluate and alleviate a child's physical, psychological, and social distress. • Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited. • It can be provided in tertiary care facilities, in community health centres and even in children's homes. Science at the heart of medicine

30. Continuum of Care for Chronically Ill and Dying Patients: 3 Models(Feudtner, et al., BMC Medicine 2003; 1:1-9) While life prolongation is often an appropriate goal, acknowledging eventual lethality is necessary Ensure physical, psychosocial, spiritual support and readiness (child, family, community An abrupt transition from curative care to purely comfort care may be impossible Science at the heart of medicine

31. Models of Care Integrative Care: healing with curing throughout life, “Being with” and Doing to”Jay Milstein, J Perinatol 2005; 25:563-568 Science at the heart of medicine

32. 8 Domains of Palliative CareNIH consensus conference on Improving End-of-Life Care (Betty Ferrel, RN, PhD, 2004) Structure & Process of Care Ethical considerations Cultural aspects Physical aspects: pain symptom management Imminently dying patient Psychological & emotional Spiritual & existential aspects Social aspects Science at the heart of medicine

33. Neonatal End-of-Life decision making varies with physician attitudes and national practices(Rebagliato, et al., JAMA 2000; 284:2451-2459) Quality of life attitude Sanctity of life attitude Science at the heart of medicine

34. Components of Perinatal Palliative and End-of-Life Care Palliative Care End-of-Life Care All of the components of palliative care Advance care planning Information about the dying process Support through the dying process Helping anticipate the nature and site of death Planning for arrangements after death Perinatal counseling • Information and support with decision making • Detailed symptom assessment and monitoring • Helping families with practical needs • Planning the site of ongoing and future care • Ensuring smooth transitions across the continuum of care Science at the heart of medicine

35. Developing a Common Language • Systematic disclosure and discussion • Interdisciplinary team care planning • Listening to the family • Recording patient and family preferences • Family receipt and review of care plan • Comprehensive look at care including medical, logistical, cultural and spiritual aspects

36. Parents as Partners: A Picture is Often Worth a Thousand Words! Used with permission

37. Supporting Families and Staff • Families and staff are vulnerable when discussions are geared toward EOL discussions, changing the goals of care for a chronically ill infant with a potentially life-limiting condition • Extensive literature showing that both families and the health care givers need ongoing guidance, support, respect and communication to achieve excellence in care (Catlin & Carter, 2002; Moro, et al., 2006; Catlin, et al., 2008) • Important to balance aggressive care oriented interventions with palliative measures • Ethically and morally appropriate (Carter & Bhatia, 2001)

38. Strategies to Support Family Coping • Truth telling • Limits confusion, mistrust • Avoids unnecessary information • Avoids mixed messages • Provide information simply and directly • Use correct words, language • Euphemisms may cause more distress • Recognize culture specific preferences • Gain familiarity with cultural and religious beliefs and practices

39. Role of Culture & Religious Beliefs and Practices • Families may have specific rituals and customs in response to illness or death • Understand how to respond, what is within the realm of expected behavior and tailor comfort • Understand the role of religion or spirituality in family coping • Religion is a prime source of support and strength for many people during serious illness or impending death • Religious references may cause distress for some individuals for whom faith has not played an important prior role Science at the heart of medicine

40. Supporting the needs of children • Reassure children they are not to blame • Understand that children make comparisons • Model appropriate behaviors • Encourage children to talk and ask questions • Be attuned to and respond to the child’s own pace for shared feelings • Provide understanding, support, extra guidance • Encourage families to seek support from other family members, friends and from spiritual or faith community Science at the heart of medicine

41. Benefits of Coordinated Care Management • Provides families with individualized and easily available support • Allows anticipation of needs and prevention of some serious complications • Provides a bridge between acute and/or chronic medical care and hospice care • Provides a seamless transition to hospice, with continuity of caregivers • Allows a collaborative and productive relationship between provider and payer to serve families

42. Support for the Family Interdisciplinary services • Child life specialists • Community support • Counseling • Durable medical supplies • Expressive therapies • Home health aides • Nurses • Pharmacy services • Physicians • Physical/occupational therapists • Speech therapy • Respite services ChIPPS, 2001 Science at the heart of medicine

43. Support for the Family: Scope of Pediatric Palliative Care • Care across Settings • Family home • Alternative home (foster care) • Inpatient hospice • Long-term nursing home • Continuum of care • Time of diagnosis • Acute care • Chronic care • Terminal care • Bereavement Science at the heart of medicine

44. Factors that influence a child and family’s adjustment to death • Sudden unanticipated death • Birth catastrophe, undiagnosed birth defect, newborn illness • After a prolonged illness (extreme prematurity) • Prenatal diagnosis or lethal or incurable condition • Stillbirth or loss of one or more infants of a multiple birth • Physical and emotional functioning of the surviving adults and siblings • Age and cognitive understanding of death • Individual personality and temperament • Religious beliefs and values Science at the heart of medicine

45. Factors that influence a child and family’s adjustment to death • Preexisting risk factors • Mental illness • Learning and social problems • Family structure, functioning and relationships • Quality of prior family member relationships • Concurrent life stressors • Finances • Living situations • Divorce, single parenting • Concurrent illness in other family members • Availability of support services, resources and interventions before, during and after death Science at the heart of medicine

46. Compassionate care for terminally ill term and preterm infants (Schulze, Z Gerburtshilfe Neonatol 2007; 211:54-59 [German]) • Involvement of family in decisions to withhold/withdraw NICU care and parental involvement in planning care does not aggravate or prolong parents’ grief responses, feelings of guilt or the incidence of pathological grief responses • Effective physical pain and symptom management is critical • Compassionate care also requires: • Parents being allowed to make individual choices regarding contact w/ their baby when the infant is dying • Recognition that the loss of a twin evokes no less serious stress and risks to parents compared to loss of a singleton • Sibling support is needed: disruption of family life • Routine scheduling of post-death/post-autopsy meetings w/ family • Active offering of bereavement support • Need information about differences to be expected between maternal and paternal grief responses • Risk of pathological grief should be mentioned to parents – requires professional help Science at the heart of medicine

47. Palliative Care Invokes Family Centered Care Principles • Families need to feel cared for and connected to HCPs • They need to retain the rights and responsibilities of parents to their infant, even as the infant is dying • Important to allow parents control whenever possible during a situation of overwhelming powerlessness (support parenting role) • Focusing on human experiences strengthens connections between families and caregivers • Provide information • Offer choices • Discuss both sides of all options Science at the heart of medicine

48. Palliative Care Invokes Family Centered Care Principles • Give families time to make difficult decisions or to be with their baby before and/or after death • Create a space for privacy/intimacy • Be sensitive to room location/activities going on near baby’s bedside • Be present/absent when needed • Strive for seamless continuity between areas of care/changes of shift • Call the baby by name • Use gentle touch and tone of voice • Offer to contact supportive persons (family members, clergy, friends, social worker) • Be familiar with hospital protocols for fetal and infant death • Preserve keepsakes Science at the heart of medicine

49. Family Centered Care Map Perinatal palliative care is integrated into the continuum of neonatal intensive care Goals of care are modified through shared decision-making as the infant’s course changes and the family’s values and preferences are clarified within a frame work of the infant’s best interest principle Science at the heart of medicine

50. BAPM Palliative Care Framework for supportive and end-of-life care, 2009 Science at the heart of medicine