Neonatal & Pediatric Palliative Care

Size: px

Start display at page:

Download "Neonatal & Pediatric Palliative Care"

Linette Gordon
5 years ago
Views:

1 Neonatal & Pediatric Palliative Care Christopher A. Collura, MD North Regional Respiratory Care Conference April 16 th, MFMER slide-1

2 Disclosures Relevant financial relationship(s) with industry None 2015 MFMER slide-2

3 Pediatric Life-Threatening Illness Background 43,000 children die annually in the US 10-times live with life-threatening illness Childhood Deaths 1-19 yo 46% Infants 54% CDC, 2013 Feudtner, JAMA, MFMER slide-3

4 Infant Death Accidents 7% Other 18% Congenital /Chrom 29% SIDS 10% Complication Pregnancy 10% Prematurity 26% CDC, MFMER slide-4

5 Pediatric Palliative Care Care Setting Hospice, 11% Other, 2% Outpatient Clinic, 11% Home, 33% ICU, 18% Hospital, 28% Feudtner, Pediatrics, MFMER slide-5

6 Pediatric Palliative Care Definition Specialized medical care for infants or children with life-threatening or life-limiting illness Focuses on providing patients with relief from the pain, symptoms and stress of serious illness Goal is to improve quality of life for both the patient and the family 2015 MFMER slide-6

7 Pediatric Palliative Care Definition Provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient s other providers and subspecialty teams to provide an extra layer of support Appropriate at any age and at any stage of serious illness and is most commonly provided along with life-prolonging treatment 2015 MFMER slide-7

half of patients cared for by pediatric palliative care have

8 Pediatric Palliative Care Plurality of Principal Diagnoses 45% Feudtner et al, Pediatrics, % 35% 30% 25% 20% Over half of patients cared for by pediatric palliative care have more than one principal diagnosis 15% 10% 5% 0% 2015 MFMER slide-8

9 Pediatric Palliative Care Chronic Complex Condition Several different organ systems A medical condition that can be reasonably expected to last at least 12 months One organ system severely enough Need specialty pediatric care and probably hospitalization in a tertiary center 2015 MFMER slide-9

10 Pediatric Palliative Care Dependence on Medical Technology 70% 60% 68% 50% 40% 30% 20% 28% 10% 0% 10% 9.5% 8.5% Gtube CVC Trach NIPV Vent Feudtner et al, Pediatrics, MFMER slide-10

Pediatric Palliative Care Multi-Organ Failure Trajectory More than 2 of 3 patients receiving pediatric palliative care will be alive in 1-year Chronicity

11 Pediatric Palliative Care Multi-Organ Failure Trajectory More than 2 of 3 patients receiving pediatric palliative care will be alive in 1-year Chronicity of pediatric lifethreatening illness Organ-failure care trajectory RE-goaling Murray et al, BMJ, 2005 Feudtner et al, Pediatrics, MFMER slide-11

12 Prognostic Uncertainty RE-Goaling Qualitative Function??????????? * Birth * NICU course G-tube * PICU * Recurrent Hospitalization * Time PICU * * Trach * * * Death Murray et al, BMJ, 2005 Feudtner et al, Pediatrics, MFMER slide-12

Pediatric Advance Care Planning Barriers 100 90 80 70 60 50 40 30 20 10 0 Upon Presentation/Diagnosis Acute

13 Pediatric Advance Care Planning Barriers Upon Presentation/Diagnosis Acute Illness Imminent Death Should Take Place Typically Takes Place Durall et al, Pediatrics, MFMER slide-13

14 Pediatric Palliative Care Integration 2015 MFMER slide-14

15 Pediatric Palliative Care Integration 2015 MFMER slide-15

16 Pediatric Palliative Care Concurrent Care 2015 MFMER slide-16

17 Pediatric Palliative Care Concurrent Care 2015 MFMER slide-17

18 Palliative Care Early Integration Metastatic non-small-cell lung cancer Early Palliative Care Integrated with Standard Oncologic Care Standard Oncologic Care Temel, NEJM, MFMER slide-18

19 Palliative Care Early Integration Metastatic non-small-cell lung cancer Early Palliative Care Integrated with Standard Oncologic Care Standard Oncologic Care Temel, NEJM, MFMER slide-19

20 Median survival 11.6 months in PC group 8.9 months in SC group Standard Temel, NEJM, MFMER slide-20

21 Pediatric Palliative Care Core Components 2015 MFMER slide-21

22 Pediatric Palliative Care Individualized Care Goals of Care Psychosocial Support Pain & Symptom Management Advance Care Pain & Planning Symptom Management Psychosocial Support 2015 MFMER slide-22

23 Pediatric Palliative Care Consultation Multiple Goals Consultative Role Proportion of Patients Symptom management 58.1% Facilitating communication 48.5% Decision-making 42.1% Coordination of care 35.3% Transition to home 14.4% DNR 11.8% Perideath recommendations 9.1% Parental bereavement 6.4% Sibling bereavement 4.5% 2015 MFMER slide-23

24 Pediatric Palliative Care Goals of Care Complex medical decision-making Hope for medical treatment Burden of illness Prognostic uncertainty Care setting Values and preferences 2015 MFMER slide-24

25 Pediatric Palliative Care Psychosocial Support Communication Spiritual support Sibling or family support Financial barriers Home care Bereavement 2015 MFMER slide-25

26 Pediatric Palliative Care Intensive Care 2015 MFMER slide-26

27 Intensive Care Effects of Parents Negative effects Marginalized role Post Traumatic Stress Disorder Key family-centered domains identified: Support of family unit Communication about goals and plans Shared decision-making Burns, Crit Care Med, 2014 Meyer, Pediatrics, MFMER slide-27

28 Parent Health After Loss 13-months 40% 35% 30% 35% * 30% 35% 25% 22% 20% 15% 15% 12% 10% 5% 0% Depression PTSD Chronic conditions Youngblut et al, Pediatrics, MFMER slide-28

29 Pediatric Palliative Care Uncertainty Evidence Experience 2015 MFMER slide-29

30 Pediatric Palliative Care Language Withdraw support Discontinue care Do everything Do nothing Lethal diagnosis Incompatible with life Failed treatment 2015 MFMER slide-30

31 Pediatric Palliative Care Pain & Symptom Management Pruritis Urinary Problems Neuropathic Pain Diarrhea Irritability Anxiety or Depression Visceral Pain Fatigue & Sleep Problems Enteral Intake Seizures Somatic Pain Dyspnea Pain & Symptoms Excessive Secretions Spasticity Nausea Cough Constipation Weight Change Appetite Disturbances Swallowing Difficulties 2015 MFMER slide-31

32 Pain Management Pain in Children with Neurological Impairment Category Vocalizations Facial expression Consolability Interaction Sleep Movement Tone Physiologic Atypical features Examples Crying, whimpering, moaning, gasping, sharp breath Grimacing, frowning, furrowed brow, squinting, eyes wide open, clenched teeth, teeth grinding, distressed Inability to be consoled and made comfortable Withdrawn, seeking comfort Disturbed sleep, increased or decreased sleep Increase from baseline in movement of arms and legs, restless and fidgety, startles easily, pulls away when touched, twists or turns Stiffening of extremities, clenching of fists, back arching, resists movement Tachycardia, sweating, shivering, change in color, pallor, breath holding, tears Blunted facial expression, laughter, breath holding, self-injurious behaviors Hauer, Pediatrics, MFMER slide-32

33 Symptom Management Secretions Saliva thin watery secretion (sialorrhea) submandibular and parotid gland liters per day (adult) lubricant, digestion, taste sympathetic; parasympathetic control (muscarinic rec) thick mucous nasal and airway mucosa produced by epithelia cells and submucosal glands innate immunity inflammatory reaction 2015 MFMER slide-33

34 Symptom Management Secretions Causes of Sialorrhea Neurodegenerative disorders Abnormalities of the mouth, jaw, nasopharynx Cancer affecting mouth Dysphagia Psychological Fluid overload, edema Causes of Thick Secretions Tube feedings Fluid overload and edema Dehydration Infection Medications (cholinergics, benzodiazepines, antiepileptics) Hain, Ped Pall Med, 2010 Tscheng, Ann Pharmacother MFMER slide-34

35 Symptom Management Secretions Goal decrease aspiration risk, dyspnea, insomnia, obstruction improve quality of life High prevalence of complications related to secretions serious neurologic impairment cerebral palsy cystic fibrosis Terminal secretions common at end of life; loss of ability to swallow and clear education of family 2015 MFMER slide-35

36 Symptom Management Secretions Non-pharmacological treatment Education of risks/benefits of fluid intake Mouth care Positioning (postural drainage) Suctioning Mobilization/chest physiotherapy Pharmacological treatment if able to expectorate, thin mucous If unable to expectorate, dry secretions (anticholinergics) Hain, Ped Pall Med, 2010 Bennett, Palliat Med, 2002 Wildiers, J Pain Symptom Manage, MFMER slide-36

37 Symptom Management Secretions Anticholinergics Titrate medications to effect Atropine ophthalmic solution delivered sublingual CNS side effects (blurred vision, constipation, urinary retention, confusion, delirium, dry mouth) Glycopyrrolate does NOT cross BBB potential for excessive dryness (thicken existing plugs) Scopolamine transdermal Hain, Ped Pall Med, 2010 Bennett, Palliat Med, 2002 Wildiers, J Pain Symptom Manage, MFMER slide-37

38 2015 MFMER slide-38

39 Definitions Extremely Low Birth Weight (ELBW) Birth Weight Grey Zone of Viability Extremely Premature Gestational Age Stoll et al, Pediatrics, MFMER slide-39

40 Gestation-Specific Mortality 100% 80% 60% 40% 20% 0% Weeks Gestation Stoll et al, Pediatrics, MFMER slide-40

41 Survival Without Severe Morbidity 60% 40% 20% 0% Stoll et al, Pediatrics, 2010 Weeks Gestation 2015 MFMER slide-41

42 Six-Year Neurodevelopmental Outcomes no disability 20% 22% severe disability 34% 24% mild disability moderate disability Marlow et al, NEJM, MFMER slide-42

43 2015 MFMER slide-43

Beyond Gestational Age Prognosis better estimated by

Single/multiple birth Birth weight 25-weeks 420 grams

NDI 22-weeks 575 grams female singleton steroids 25%

44 Beyond Gestational Age Prognosis better estimated by additional factors Sex Antenatal steroids Single/multiple birth Birth weight 25-weeks 420 grams male twin no steroids 20% survival 5% survival without NDI 22-weeks 575 grams female singleton steroids 25% survival 10% survival without NDI Tyson et al, NEJM, MFMER slide-44

45 2015 MFMER slide-45

46 2015 MFMER slide-46

47 Gestation-Specific Mortality Active Treatment 80% 70% 72% 72% 60% 50% 55% 57% 40% 30% 20% 23% 24% 33% 10% 0% 5% 22-wks 23-wks 24-wks 25-wks All infants Active Treatment Rysavy et al, NEJM, MFMER slide-47

48 Withdrawing versus Withholding Well-supported in ethics and law Physicians demonstrates difficulty with practice of withdrawal of LSMT Psychological difference in withdrawal versus withholding withdrawal contributes to death versus letting die by withholding commitment to time and effort emotional connectedness Leuthner, Clin Perinatol, 2014 Meadow et al, Clin Perinatol, MFMER slide-48

49 Questions & Discussion 2015 MFMER slide-49

Hospice and Palliative Medicine

Hospice and Palliative Medicine Certification Examination Blueprint Purpose of the exam The exam is designed to evaluate the knowledge, diagnostic reasoning, and clinical judgment skills expected of the