Complex Care Curriculum Palliative Care for the Medically

Complex Care Curriculum Palliative Care for the Medically Complex Child Melanie Anspacher, MD Neha Shah, MD

Complex Care Curriculum Palliative Care Know the definition and general principles Identify opportunities to initiate palliative care Plan communication of prognosis to families Recognize the role of the provider in supporting families with decision-making Describe the role of the multidisciplinary team Outline some fundamental principles of pain management Discuss common dilemmas and ethical issues Recognize limitations and barriers

Complex Care Curriculum Palliative Care “The relief of physical, social, emotional and spiritual suffering in children and their families” Palliative care seeks to prevent or relieve the physical and emotional distress produced by a life-threatening medical condition or its treatment, to help patients with such conditions and their families live as normally as possible, and to provide them with timely and accurate information and support in decision making. Field & Behrman, . When Children Die. Institute of Medicine, 2003. Korones. Pediatrics in Review, 2007.

Complex Care Curriculum Palliative Care Abrupt Transition CURATIVE PALLIATIVE

Complex Care Curriculum Palliative Care Gradual Transition PALLIATIVE CURATIVE

Complex Care Curriculum Palliative Care Palliative care should be integrated with curative care. Symptom Management. PALLIATIVE Disease-modifying therapy Bereavement Family Support/Advanced Care Planning CURATIVE AAP. Palliative Care for Children. Pediatrics, 2000. When Children Die. Institute of Medicine, 2003.

Complex Care Curriculum Palliative Care Child-focused Family-Centered Introduced Early √ Integrated Coordinated Goal-Directed Himelstein, 2006; National Hospice and Palliative Care Organization; The World Health Organization

Complex Care Curriculum Palliative Care Involve family (and child) in decision-making Be available in all settings (home, hospital, school) Integrated Offer bereavement support Team Approach √

Complex Care Curriculum Palliative Care Hasten Death Require DNR Orders x Hospice Care Palliative care is NOT restricted to hospice or end-of-life care. National Hospice and Palliative Care Organization (NHPCO)

Complex Care Curriculum Palliative Care 53, 000 11, 000 9000 Annual Child Deaths Complex Chronic Conditions – non malignancy Feudtner et al, 2000; Feudtner et al, 2007; Moody et al, 2011.

Complex Care Curriculum Palliative Care Curative treatment is possible but may fail Cancer Complex congenital heart disease Unexpected trauma/illness Extreme prematurity* Early death is inevitable, but with long periods of treatment aimed at prolonging life and maintaining quality of life Cystic Fibrosis Dependence on parenteral nutrition Muscular Dystrophy Treatment is exclusively palliative after diagnosis Trisomy 13 or 18 Severe osteogenesis imperfecta Severe, nonprogressive but irreversible disability, with frequent complications and premature death Severe cerebral palsy Neurological sequelae of disease Hypoxic brain injury Extreme prematurity* Himelstein, 2004 NHPCO Standards of Pediatric Palliative Care, 2009

Complex Care Curriculum Palliative Care Genetic/ Congenital Malignancy Neuromuscular 60% Feeding Tubes 22% Central Venous Catheters Cognitive Impairment 10% Tracheostomy 9% Ventilator Dependent Other Gastrointestinal Respiratory Feudtner et al, Pediatrics, 2011

Complex Care Curriculum Palliative Care Respiratory Neurological Cardiac Death Infectious Gastrointestinal

Complex Care Curriculum Palliative Care Health Status Premature Death Time (months to years) Adapted from Klick, Hauer, 2010.

Complex Care Curriculum Palliative Care Conditions for which curative treatment is possible but may fail Health Status Diagnosis Remission Relapse Premature Death Time (months to years)

Complex Care Curriculum Health Status Palliative Care Conditions where early death is inevitable, but where there may be long periods of intensive treatment aimed at prolonging life and maintaining quality of life Premature Death Time (months to years)

Complex Care Curriculum Health Status Palliative Care Conditions where early death is inevitable, but where there may be long periods of intensive treatment aimed at prolonging life and maintaining quality of life Crisis Premature Death Time (months to years)

Complex Care Curriculum Health Status Palliative Care Conditions involving severe, nonprogressive but irreversible disability, vulnerability to health complications and likely premature death Unexpected Event Crisis Premature Death Time (months to years)

Complex Care Curriculum Health Status Palliative Care Conditions involving severe, nonprogressive but irreversible disability, vulnerability to health complications and likely premature death Crisis Premature Death Time (months to years)

Complex Care Curriculum Palliative Care Health Status Medical Support Interventions Premature Death Time (months to years)

Complex Care Curriculum Health Status Diagnosis Delivery of Prognosis Palliative Care Period of Adjustment Crises End of Life Premature Death Time (months to years) Adapted from Klick & Hauer, 2010

Complex Care Curriculum Palliative Care ? Anticipate premature death Health status deteriorating ? ? Child is suffering Palliative care should be introduced early.

Complex Care Curriculum Palliative Care Health Status Diagnosis Delivery of Prognosis Period of Adjustment Crises End of Life Premature Death Time (months to years)

Complex Care Curriculum Palliative Care Barriers to Communicating Prognosis Disease Family Provider Contro, et al, 2004; Davies et al, 2008; Wolfe et al, 2000.

Complex Care Curriculum Health Status Diagnosis Delivery of Prognosis Palliative Care Diagnosis Confirmed Unknown Period of Adjustment Crises End of Life Premature Death Time (months to years)

Complex Care Curriculum Palliative Care Prepare Assess Deliver √ Allow for silence/emotion Answer questions Plan Do not abandon Klick & Hauer, 2010

Complex Care Curriculum Palliative Care Burden Benefit

Complex Care Curriculum Benefit Palliative Care Quality of Life Clear Unclear None Suffering Initiative for Pediatric Palliative Care Curriculum.

Complex Care Curriculum Health Status Diagnosis Delivery of Prognosis Palliative Care Period of Adjustment Crises End of Life Premature Death Time (months to years)

Complex Care Curriculum Palliative Care Courtesy of HSC Pediatric Center, Washington, DC.

Complex Care Curriculum Palliative Care Always focus on what can be done.

Complex Care Curriculum Palliative Care Parent Wishes Provider Other families Wishes If an intervention is of unclear or marginal benefit, the family’s wishes should be honored.

Complex Care Curriculum Palliative Care Pain Aspiration Artificial nutrition and hydration are medical treatments that can be withheld or withdrawn. Fluid Overload AAP. Palliative Care for Children. Pediatrics, 2000; NHPCO Policy Statement 2010; IPPC Curriculum; When Children Die. Institute of Medicine, 2003.

Complex Care Curriculum Palliative Care Withholding Withdrawing ? There is no ethical distinction between withholding and withdrawing an intervention.

Complex Care Curriculum Palliative Care Health Status Diagnosis Delivery of Prognosis Period of Adjustment Crises End of Life Premature Death Time (months to years)

Complex Care Curriculum Palliative Care Team Approach Consistent Caregiver √ 24 hour availability Seamless Transition AAP Policy Statement, 2000.

Complex Care Curriculum Palliative Care Physician Social Worker Nurse Team Chaplain Child Life Psychology

Complex Care Curriculum Palliative Care coordination Basic symptom management Conflict resolution Goal setting Primary provider Team Ethical challenges Decision-making Discharge planning Bereavement support Advanced symptom management Quill, Abernathy 2013.

Complex Care Curriculum Palliative Care Psyc holo gica l Spi al Ph ritu ysi cal al Soci Suffering

Complex Care Curriculum Palliative Care Pain Dysautonomia Secretions Suffering Spasticity Dysmotility Seizures Dyspnea

Complex Care Curriculum Palliative Care ic n o r h Pain edu re En e -lif Ac f d-o ute C Proc Suffering

Complex Care Curriculum Palliative Care Non-opioids Opioids Adjuvants Nonpharmacologic

Complex Care Curriculum Palliative Care Moderate to Severe Pain Opioid +/ - Adjuvant +/- Non-opioid Mild Pain Non-opioid +/ - Adjuvant WHO Guidelines on the Pharmacologic Treatment of Persisting Pain in Children with Medical Illnesses. WHO, 2012. Diagram adapted from World Health Organization 3 -step pain ladder.

Complex Care Curriculum Palliative Care c thi a p o ur Cen tral ep cic No Pain Comfort Suffering al cer sia Vis ralge pe Hy tiv e Ne

Complex Care Curriculum Palliative Care By the ladder By the patient By the clock By the mouth

Complex Care Curriculum Palliative Caregiver Patient Barriers to Pain Management Provider Hospital/Health System Moody, et al, 2011.

Complex Care Curriculum Health Status Diagnosis Delivery of Prognosis Palliative Care Period of Adjustment Crises End of Life Premature Death Time (months to years)

Complex Care Curriculum Palliative Care Minimize Interventions Minimize Monitoring Maximize Togetherness Anticipate Symptoms Manage Pain

Complex Care Curriculum Palliative Care Opioids Euthanasia Doctrine of Double Effect INTERVENTION Intervention Intended Consequence Good effect Unintended Consequence Bad Effect Foreseen Initiative for Pediatric Palliative Care Curriculum

Complex Care Curriculum Palliative Care Is the patient suffering? Does the treatment relieve this suffering? Is it your intent to relieve pain and suffering? Are you providing only that which is necessary? Treating pain at end-of-life with opiate medications is not euthanasia.

Complex Care Curriculum Palliative Care HOSPITAL HOME HOSPICE Feudtner, 2002; Moody et al; 2011 Feudtner et al, 2007

Complex Care Curriculum Palliative Care Durable Do N ot Resuscitate Order Department of Health ____________ Date: ________ ___ -----------------------------------------------------------------------------------------Physician Signa ture: ____________ Patient’s Name:

Complex Care Curriculum Palliative Care Autopsy? Organ donation? Funeral arrangements Memory making Ongoing bereavement support

Complex Care Curriculum Palliative Care Photos courtesy of Rebecca Simonitsch Published first in CHIPPS (Childrens Healthcare and Palliative Care Services) Newsletter, 2010

Complex Care Curriculum Palliative Care • Lack of acceptance • Lack of agreement • Fear of failure • Unclear prognosis • Lack of experience • Reimbursement • Lack of providers Physician Family System Hospital • Limited Resources

Complex Care Curriculum HOSPICE Palliative Care Lack of Pediatric Providers Conflicting Goals Limits of Medicare Model Freibert, NHCPO Facts & Figures, 2009 Moody et al, 2011; Liben et al, 2008

Complex Care Curriculum √ Palliative Care Affordable Care Act Palliative Hospice Concurrent Care Curative Concurrent Care for Children Requirement: Implementation Guidelines. NHCPO, 2011.

Complex Care Curriculum Palliative Care Palliative and curative care should be integrated Palliative care is NOT restricted to hospice or end-of-life care Palliative care should be introduced early Communicate prognosis without mixed messages or euphemisms

Complex Care Curriculum Palliative Care When an intervention is of unclear or marginal benefit, the family’s wishes should be honored Always focus on what CAN be done Artificial nutrition and hydration can be withheld or withdrawn in certain cases There is no ethical distinction between withdrawing and withholding an intervention

Complex Care Curriculum Palliative Care Children with complex medical conditions suffer from many types of pain Pain management should be “by the ladder, by the clock, by the mouth and by the patient” Pain management at the end of life, when adhering to the Doctrine of Double Effect, is not considered euthanasia Palliative care continues beyond the death of the child – “Do not abandon”

Complex Care Curriculum Palliative Care Recommended Reading Korones, DN. Pediatric Palliative Care. Pediatrics in Review. 2007; 28: e 46 -56. Klein SM; Saroyan JM. Treating a child with a lifethreatening condition. Ped Annals. May, 2011. Klick JC, Hauer J. Pediatric Palliative Care. Curr Probl Pediatr Adolesc Health Care. 2010; 40: 120 -151.

Complex Care Curriculum Palliative Care Online Resources Initiative for Palliative Care Curriculum www. ippcweb. org Free access to modular curriculum with registration National Hospice and Palliative Care Organization www. nhpco. org District of Columbia Palliative Care Collaboration http: //www. dcppcc. org/professionals/index. html

Complex Care Curriculum Palliative Care Pain References Friedrichsdorf SJ, Kang TI. The management of pain in children with life-limiting illness. Ped Clin N Am. 2007; 54: 645 -72. Klick JC, Hauer J. Pediatric Palliative Care. Curr Probl Pediatr Adolesc Health Care. 2010; 40: 120 -151. Moody K; Siegel L; Scharbach K; Cunningham L; Cantor M. Pediatric Palliative Care. Primary Care Clin. 2011; 3: 327 -361. – contains pediatric palliative care formulary IPPC Module 2: Pain Management http: //ippcweb. org/module 2. asp Free registration; download facilitator’s guides for more information on pain management. World Health Organization Guidelines on Persisting Pain for Children. Available at: http: //www. who. int/medicines/areas/quality_safety/guide_perspainchild/en/

Complex Care Curriculum Palliative Care Acknowledgements The authors would like to thank Dr. Shana Jacobs and Dr. Miriam Bloom for their time in reviewing this module as content experts.