Children Die. Palliative Care for Children with Cardiac Conditions: Supporting Families through complex medical care 5/29/2015

Transcription

1 Palliative Care for Children with Cardiac Conditions: Supporting Families through complex medical care Disclosures I have no relevant financial relationships to disclose. Jeanne Gallen Lewandowski, MD Chief, Department of Pediatrics Beaumont Hospital Grosse Pointe Beaumont Children s Hospital Director, Palliative Medicine St John Hospital and Medical Center Detroit, MI Medical Director, Pediatrics Walk with ME a pediatric palliative care program Children s Children s Specialty Specialty Group. Group. All All rights rights reserved. reserved. Children Die US Childhood Death: ,440 infants 4,068 children ages 1-4 years 2,427 children ages 5-9 years 2,913 children ages years 9,480 adolescents ages years 18,888 total deaths age 1-19 Total US: 42,328 Pediatrics:Vol135,#6,June 2015,

2 In Wisconsin today: 3,932,181 births in US (down 20,000 since 2012) WI births 2013: 66, 566 (663 less than 2012) US Population: 313,914,000 (2012) WI Population: 5,730,850 (2013) 49,917 WI deaths (up 1,692 since 2012) 11,310 WI Cardiac deaths (leading cause in WI) WI total Childhood deaths: 708 WI Infant deaths: in Milwaukee County (35% infant deaths, 21% of WI 2013 births) 1-4yrs: yrs: : : US Children Cardiac Deaths: ICD , 111, 113, th leading cause childhood death -3.0% deaths Total Age 1-19yr: 639 Infant: 458 Rate: 7.8 (#/100,000 pop) Congenital Anomalies: 4, years: 169 Rate: yr: 173 Rate: yr: 941 Rate: 2.1 Wisconsin (2013): < 1yr: yrs: yrs: 6 Total WI 2013 Cardiac Deaths: 11, Childhood Death: 36% childhood deaths are preventable injuries MVA, fires, burns, drowning, choking, falls, firearm injuries since 1979 death rates from injuries i have declined d 47% 64% deaths are NOT preventable congenital anomalies, malignancies, diseases of the heart, neurodegenerative diseases, AIDS New language: CAPC Center to Advance Palliative Care Palliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness - whatever the diagnosis. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient's other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment. 2

3 What is Pediatric Palliative Care: Palliative care for children is best understood as specialty care encompassing a combination of medical, psychosocial, py and spiritual care that enables children with serious, life-threatening illnesses to maximize quality of life while making medical decisions based on the goals and values of the patient and family. T Kang, et al. Integration of Palliative Care Into the Care of Children With Serious Illness PEDS IN REVIEW Vol. 35 No. 8 August 1, 2014 pp Who Benefits from Pediatric Palliative Care: 1 million US children seriously ill < 1% eligible children receive hospice care for every 100,000 children by population: 100 have life-limiting conditions at any time 50 need active palliative care at any time 10 will die each year from progressive or life-threatening conditions excludes childhood deaths from trauma, neonatal deaths, acute infectious disease deaths Goldman A, ACT (Association for the Care of Children with Life-Threatening Disorders and their Families), UK 4 Diagnostic Groups for Pediatric Palliative Care: ACT Children with conditions where treatment possible, but may fail (Ca) Conditions where premature death likely but intensive symptom management can provide good Quality of Life for long time (CF, MD, HIV) Progressive conditions in which treatment is exclusively palliative from diagnosis and may extend over years (Batten s, mucopolysaccharidosis, CJD) Condition not progressive, but renders child vulnerable to serious complications so that life expectancy is actually very short (hypoxic ischemic encephalopathy, spinal cord injury) 3

4 pp AAP Guidelines for Pediatric Palliative Care: Pediatric palliative care addresses the needs of infants, children, adolescents, and young adults ( children ) with these conditions and the needs of their families, providing treatments that aim to: (1) relieve suffering across multiple realms, including physical psychological, py social, practical (home-based services or financial stress), and existential or spiritual; (2) improve the child s quality and enjoyment of life while helping families adapt and function during the illness and through bereavement; (3) facilitate informed decision-making by patients, families, and health care professionals; and (4) assist with ongoing coordination of care among clinicians and across various sites of care. Pediatric Palliative Care Is committed to: Patient Centered and Family Engaged Care Respect and Partnering Quality, Access, and Equity Care Across Age Spectrum and Life Span Integration Into the Continuum of Care Universal Preparedness and Consultation Research and Continuous Improvement From the American Academy of Pediatrics Policy Statement: Pediatric Palliative Care and Hospice Care Commitments, Guidelines, and Recommendations SECTION ON HOSPICE AND PALLIATIVE MEDICINE AND COMMITTEE ON HOSPITAL CARE PEDIATRICS Vol. 132 No. 5 November 1, 2013 pp Family Support AAP Policy: Pediatric palliative care clinicians should aim to partner with and support parents throughout the course of the child s illness experience: ongoing care of the child facilitate decision-making help the parents and family cope with the ramifications of living with a serious medical condition sibling and extended family support practical support should include addressing family financial problems spiritual support should be offered throughout the trajectory of care. respite care should be provided. support in carrying out important family, religious, or cultural rituals before and after a child dies. counsel the family regarding the potential benefits of additional genetic or metabolic testing of the patient or other family members provide bereavement services before and after the patient s death AAP Best Practice Standards PPC: Involve the PPC team as soon as possible in Dx of condition with grave prognosis Strive for meticulous symptom management Address multiple sources of discomfort and suffering Attempt disease modifying therapy while focusing on optimal quality of life Maintain relationships and authority with primary care and subspecialist providers Provide care at home, school, and in the community Provide care as long as the child requires Provide bereavement care 4

5 Cardiac Criteria for Pediatric Palliative Care: Single ventricle* Severe pulmonary hypertension* Down s syndrome with significant cardiac anomaly* Ebstein s anomaly* Eisenmenger s syndrome* Cardiomyopathy, hypertrophic or severe dilated* Pulmonary atresia* Consideration of cardiac transplant* Combined cardiac and neurologic/chromosomal Dx* Complex congenital heart disease ECMO candidate Severe myocarditis * Automatic pediatric palliative care referral, otherwise suggested 5

6 How do children die? Many from neurologic dysfunction or coordination Impaired motor control and tone resulting in compromise of pulmonary function. Dysfunction of the GI tractt Associated organ impairment and failure Central apnea Congenital heart disease Sudden death associated with seizure or dysrhythmia Increasing somnolence with time Care of the child s family: Be present to support them They will remember if you stayed or never came Families in crisis need physical care and emotional support Slow your pace and words: Repeat and Write Make memories no matter how short the time is the value of books Affirm parents, sibs, and caregiver roles Siblings do fine with clarification, support, reassurance Special circumstances with children: Prenatal and perinatal palliative care dealing with ambivalence Signing a DNaR order Care for child during organ procurement Normal looking dying child Infant not to be born alive, thriving Continuing pregnancy against medical advice Parental Experience with Life-Threatening Fetal Diagnosis: Grieving Multiple Losses Normal pregnancy Healthy baby Future parenting Arrested Parenting Interruption of normal process of becoming a parent My Baby is a Person Unanimous desire to honor and legitimize humanity of unborn baby Fragmented Health Care Encounters with multiple providers Disconnected Family and Friends Utterly Alone Cote-Arsenault, Denney-Koetsch: J Pall Med,vol14, number 12, 2011; p

7 Words that hurt: Infant has condition incompatible with life Riley is worth loving Recommendations for termination of pregnancy of infant with disability or difference to protect the family from disappointment, grief, or struggle Communicating that the life of a baby not yet born is any less valuable than one already here. Perinatal Palliative Care: at diagnosis of potentially fatal fetal pathology coordinate with MFM Birth/Death plan support for family anticipate Ambivalence expertise in Delivery Room care newborn care that facilitates Family Goals coordination for transition to home alternate Support of Birth to Management of Dying Life is like a box of chocolates. You never know what you re gonna get. Forrest Gump 7

8 What Palliative Care Can Do: Create a birth plan with parents Assist parents and staff in identifying resources to help the family cope during pregnancy Address the emotional needs and concerns of the other children in the family Provide guidance and encouragement in finding hope and comfort amidst the family s anguish and grief Support the needs of the baby and family if hospitalized Assist the inpatient staff in coordinating a plan of care including discharge planning when appropriate Create ways to celebrate and welcome the baby in the hospital and at home Assist in creating special keepsakes and memories prior to and after the baby s birth (handprints, photographs, locks of hair, etc) Planning funeral arrangements, memorial services Provide bereavement support for all family members Provide aftercare for the clinical staff Provide high quality skilled medical symptom management Concurrent Care for Children: On March 23, 2010, President Obama signed the Patient Protection and Affordable Care Act (PPACA) into law enacting a new provision, Section 2302, termed the Concurrent Care for Children Requirement (CCCR). ACA Section 2302 SSA - Concurrent Care for Children For purposes of this title, with respect to the definition of hospice program A voluntary election to have payment made for hospice care for a child (as defined by the State) shall not constitute a waiver of any rights of the child to be provided with, or to have payment made under this title for, services that are related to the treatment of the child s condition for which a diagnosis of terminal illness has been made. 8

9 Concurrent Care for Children: CMS: States would continue to pay providers of curative services using the payment methodology approved for those services. States will continue to reimburse hospices for services within the hospice benefit. We would expect States to have a process to ensure collaboration with the provider community to take each child s case into account in determining whether a service is curative or palliative. Hospices are not responsible for providing or paying for curative treatment. Eric Cassel,MD The Nature of Suffering and the Goals of Medicine NEJM1982; 306: Suffering is a state of severe distress associated with events that threaten the intactness of the person. Hopes Roles Personality Past Physical Body Culture Unconscious PERSONHOOD Relationships Transcendent Spiritual Politics A person is a person no matter how small Horton Behaviors Secret Lives Future Family Activities 9

10 Thank you Jeanne G. Lewandowski, MD 10