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Palliative Care for the Medically Complex Child Supplementary cases
Melanie Anspacher, MD Neha Shah, MD
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Case 1 Develops recurrent ileus and inability to tolerate feeding with each acute illness. 12 year old girl with history of traumatic brain injury Spastic cerebral palsy Developmental delay Seizures Gastrostomy tube fed Tracheostomy Crises
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Case 1 Pain with enteral feeding Difficult to manage other symptoms
Problem refractory to maximized medical management Quality of life perceived to be poor by family 12 year old girl with history of traumatic brain injury Spastic cerebral palsy Developmental delay Seizures Gastrostomy tube fed Tracheostomy Recurrent ileus, unable to tolerate enteral feeds
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Case 1 Burden Benefit 12 year old girl with history of traumatic brain injury Spastic cerebral palsy Developmental delay Seizures Gastrostomy tube fed Tracheostomy Recurrent ileus, unable to tolerate enteral feeds
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? Case 1 Withholding Withdrawing
12 year old girl with history of traumatic brain injury Spastic cerebral palsy Developmental delay Seizures Gastrostomy tube fed Tracheostomy Recurrent ileus, unable to tolerate enteral feeds Withdrawing
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Case 1 Pain Aspiration Fluid Overload
12 year old girl with history of traumatic brain injury Spastic cerebral palsy Developmental delay Seizures Gastrostomy tube fed Tracheostomy Recurrent ileus, unable to tolerate enteral feeds Parenteral nutrition requires frequent lab monitoring and can cause electrolyte abnormalities, liver disease, and increase risk of infection. Fluid Overload
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Case 1 Admitted to inpatient hospice ANH withdrawn
Allowed natural death 12 year old girl with history of traumatic brain injury Spastic cerebral palsy Developmental delay Seizures Gastrostomy tube fed Tracheostomy Recurrent ileus, unable to tolerate enteral feeds
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Case 1 Key teaching points:
Neurologically impaired children are at risk for dysmotility and GI dysfunction that can make feeding challenging and often cause pain and suffering Withdrawal of Artificial Nutrition and Hydration (ANH) is ethically permissible in certain cases ANH can have harmful side effects and benefits don’t always outweigh risks 12 year old girl with history of traumatic brain injury Spastic cerebral palsy Developmental delay Seizures Gastrostomy tube fed Tracheostomy Recurrent ileus, unable to tolerate enteral feeds
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Case 2 Diagnosis Delivery of Prognosis
16 month old boy with history of birth asphyxia Spastic cerebral palsy Developmental delay Seizures Gastrostomy tube fed
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Case 2 Acceptance of prognosis, focus on symptom control and comfort.
Period of Adjustment 16 month old boy with history of birth asphyxia Spastic cerebral palsy Developmental delay Seizures Gastrostomy tube fed Vomiting, poor weight gain
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Case 2 Persistent vomiting, weight loss, and breathing difficulties.
16 month old boy with history of birth asphyxia Spastic cerebral palsy Developmental delay Seizures Gastrostomy tube fed Vomiting, poor weight gain Aspiration Crises
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Case 2 Benefit Quality of Life Clear
16 month old boy with history of birth asphyxia Spastic cerebral palsy Developmental delay Seizures Gastrostomy tube fed Vomiting, poor weight gain Aspiration Unclear None Suffering Initiative for Pediatric Palliative Care Curriculum.
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Case 2 Suffering Pain Secretions
Dysautonomia Secretions 16 month old boy with history of birth asphyxia Spastic cerebral palsy Developmental delay Seizures Gastrostomy tube fed Vomiting, poor weight gain Aspiration Suffering Spasticity Dysmotility Seizures Dyspnea
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Case 2 Alternative intervention (gastro-jejunal tube) offered
Suffering reduced Quality of life improved Palliative care re-introduced to provide continued support for family 16 month old boy with history of birth asphyxia Spastic cerebral palsy Developmental delay Seizures Gastrostomy tube fed Vomiting, poor weight gain Aspiration
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Case 2 Key Teaching Points
It is often difficult for parents to accept poor neurological prognosis at birth. Goals of care may change over time. Misperceptions of palliative care are common. Education is needed to ensure families can benefit from available services. When benefit/burden of procedures is unclear (such as surgeries) family wishes should be honored. Always ensure that all measures have been taken to make the patient comfortable and relieve suffering. 16 month old boy with history of birth asphyxia Spastic cerebral palsy Developmental delay Seizures Gastrostomy tube fed Vomiting, poor weight gain Aspiration
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Case 3 Recurrent pneumonias and respiratory insufficiency lead to tracheostomy and possible ventilator dependence. 9 year old girl born at 24 weeks gestation with Grade 4 IVH Developmental delay Seizures VP shunt Spasticity GJ tube fed New tracheostomy Crises
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Case 3 Increased pain / suffering despite maximized medical management
Perceived deterioration in quality of life More time in hospital Anticipated escalation in medical interventions needed to sustain life 9 year old girl born at 24 weeks gestation with Grade 4 IVH Developmental delay Seizures VP shunt Spasticity GJ tube fed New tracheostomy Recurrent pneumonia Ventilator dependence
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Case 3 HOSPITAL HOME HOSPICE
9 year old girl born at 24 weeks gestation with Grade 4 IVH Developmental delay Seizures VP shunt Spasticity GJ tube fed New tracheostomy Recurrent pneumonia Ventilator dependence HOSPICE
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Case 3 Curative 9 year old girl born at 24 weeks gestation with
Palliative Curative Concurrent Care 9 year old girl born at 24 weeks gestation with Grade 4 IVH Developmental delay Seizures VP shunt Spasticity GJ tube fed New tracheostomy Recurrent pneumonia Ventilator dependence Curative
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Case 3 Family chooses home hospice
Private duty nursing services continued Wish for death at home honored Family togetherness maximized 9 year old girl born at 24 weeks gestation with Grade 4 IVH Developmental delay Seizures VP shunt Spasticity GJ tube fed New tracheostomy\ Recurrent pneumonia Ventilator dependence
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Case 3 Key Teaching Points
Many children ultimately die in a hospital setting. Discharge home with hospice is an alternative that can be considered. The Concurrent Care Act requires that Medicaid support both hospice care and routine or curative care, including home nursing. Barriers continue to exist to providing pediatric hospice care and to implementation of Concurrent Care in practice. 9 year old girl born at 24 weeks gestation with Grade 4 IVH Developmental delay Seizures VP shunt Spasticity GJ tube fed New tracheostomy Recurrent pneumonia Ventilator dependence
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