Thank you for giving me aliveness

Transcription

1 Objectives Palliative Care of the Newborn Mike Harlos MD, CCFP, FCFP Professor, Faculty of Medicine, University of Manitoba Medical Director, Winnipeg Regional Health Authority Palliative Care Program Co-Chair, Canadian Network of Palliative Care for Children Physician Consultant, Canadian Virtual Hospice Simone Stenekes RN, MN, CHPCN(c) Clinical Nurse Specialist, WRHA Pediatric Symptom Management & Palliative Care Service To consider the definition of pediatric palliative care To consider where pediatric palliative care may fit in the spectrum of care for newborns To review potential approaches to symptom management for the palliative newborn To consider common ethical challenges with newborn palliative care Describe approaches for supporting families experiencing the death of their baby What Is Palliative Care? (a personal definition) Palliative Care is an approach to care which focuses on comfort and quality of life for those affected by life-limiting/life-threatening illness. Its goal is much more than comfort in dying; palliative care is about living, through meticulous attention to control of pain and other symptoms, supporting emotional, spiritual, and cultural needs, and maximizing functional status. The spectrum of investigations and interventions consistent with a palliative approach is guided by goals of patient and family and by accepted standards of health care, rather than being boundaried by preconceptions of what is or is not "palliative". Thank you for giving me aliveness Jonathan 6 yr old boy terminally ill boy Ref: Armfuls of Time ; Barbara Sourkes Pediatricians Sense Of Preparedness For Practice Lieberman L, Hilliard LI; Medical Education 2006; 40: n = 239 pediatricians certified in Canadian training programs between1999 and 2003 Medical expert providing anticipatory guidance, well child care Medical expert dealing with child and youth maltreatment abuse Medical expert dealing with the chronic care of complex problems Medical expert dealing with palliative care Medical expert dealing with death and bereaved parents Procedural skills Communicator - working successfully with difficult patients families Communicator - working successfully with cultural or socioeconomic differences Collaborator - working as a member of a team Manager - learning principles of quality management Manager - managing an efficient office practice Health advocate for individual patients Health advocate for disadvantaged children or child health issues Scholar - ability to carry out a research project Scholar - ability to critically appraise literature Professional and ethical issues Prognostic Uncertainty predicting prognosis is distinctly challenging in children access to services helping with comfort should not require certainty or proximity of a fatal outcome, or even acceptance of a threatened life there is a role for consultative support even when all efforts to reverse underlying conditions are being pursued (eg. transplant waiting lists) i.e. Prognostic Irrelevance

2 Common Trajectory Of Decline In Progressive Life-Limiting Illness In Children From presentation by Joanne Wolfe at the 16 th International Congress on the Care of The Terminally Ill Palliative Care The What If? Tour Guides Functional Status Crises ( Scary Dips ) Decline Death What if? What would things look like? Time frame? Where care might take place What should the patient/family expect (perhaps demand?) regarding care? How might the palliative care team help patient, family, health care team? Disease-focused Care ( Aggressive Care ) Time Annual Summary of Vital Statistics (US Data): 2005 Infants: 5 Leading Causes Of Death % 20 Congenital malformations Hamilton, BE et al; Pediatrics 2007;119; Unlikely role for Palliative Care in symptom management, though potentially in family and staff support Potential role for Palliative Care in symptom management as well as family and staff support 17 8 Prem/LBW SIDS Pregnancy Complications (Maternal) 6 4 Unintentional Injury Palliative Care Should Be Considered In Three General Categories: 1. neonates at the limit of viability 2. neonates with congenital anomalies considered to be lethal 3. neonates with serious medical or surgical conditions not responding to maximal therapy or for whom continued treatment may prolong suffering Bhatia, J; Palliative care in the fetus and newborn Journal of Perinatology (2006) 26, S24 S26 Bhatia, J; Palliative care in the fetus and newborn Journal of Perinatology (2006) 26, S24 S26

3 General Principles For The Prevention And Management Of Pain In Newborns 1. Pain often unrecognized and undertreated. Neonates do feel pain, and analgesia should be prescribed when indicated during their medical care. 2. If something hurts adults, it will hurt newborns, even if they are preterm. 3. Compared with older age groups, newborns may experience a greater sensitivity to pain and are more susceptible to the long-term effects of painful stimulation. 4. Adequate treatment of pain may be associated with complications and mortality. 5. The appropriate use of environmental, behavioral, and pharmacological interventions can prevent, reduce, or eliminate neonatal pain in many clinical situations. 6. Sedation does not provide pain relief and may mask the neonate's response to pain. 7. Health care professionals have the responsibility for assessment, prevention, and management of pain in neonates. 8. Clinical units providing health care to newborns should develop written guidelines and protocols for the management of neonatal pain. Anand KJ. Consensus statement for the prevention and management of pain in the newborn. Arch Pediatr Adolesc Med 2001; 155(2): Anand KJ. Consensus statement for the prevention and management of pain in the newborn. Arch Pediatr Adolesc Med 2001; 155(2): Approach To Analgesia Use In Pediatric Palliative Care Simons SH, Anand KJ.; Pain control: opioid dosing, population kinetics and side-effects. Semin Fetal Neonatal Med Aug;11(4): Epub 2006 Apr 18. The enteral route preferred for most children, most of the time (NICU typically use intravenous) However many alternate routes available if needed: IV (peripheral and central) Subcutaneous Transmucosal (nasal, buccal, sublingual) Transdermal / transcutaneous Spinal: epidural, intrathecal (Rarely, if ever, in NICU) Rectal (usually not well tolerated) Use adjuvants as appropriate The W.H.O. ladder is a good template on which to base analgesic use

4 Intranasal Meds Drug T max (min) Bioavailability (%) Midazolam 1, * Fentanyl Sufentanil Hydromorphone * Available to the cerebral cortex 2 5 min. after nasal use 5 Reasonable to start with recommended mg/kg for IV dosing and adjust empirically 1. P. D.Knoester ; Pharmacokinetics and pharmacodynamics of midazolam administered as a concentrated intranasal spray. A study in healthy volunteers; Br J Clin Pharmacol May;53(5): Rey E. et al; Pharmacokinetics of midazolam in children: comparative study of intranasal and intravenous administration; Eur J Clin Pharmacol 41(4) 1991; Dale O, Hjortkjaer R, Kharasch ED; Nasal administration of opioids for pain management in adults; Acta Anaesthesiol Scand Aug;46(7): Coda BA, Rudy AC, Archer SM, Wermeling DP; Pharmacokinetics and bioavailability of single-dose intranasal hydromorphone hydrochloride in healthy volunteers; Anesth Analg Jul;97(1): Fisgin T et al; Effects of intranasal midazolam and rectal diazepam on acute convulsions in children: prospective randomized study; J Child Neurol Feb;17(2):123-6 W.H.O. ANALGESIC LADDER By the Clock Weak opioid +/- adjuvant 1 Non-opioid +/- adjuvant 2 3 Strong opioid +/- adjuvant Pain persists or increases Opioids And Incomplete Cross-tolerance Conversion tables assume that tolerance to a specific opioid is fully crossed over to other opioids. Cross-tolerance unpredictable, especially when a high tolerance has developed: high doses long-term use Often divide calculated conversion dose in ½ and titrate Tolerance Physical Dependence Psychological Dependence / Addiction

5 Opioids In Neonates Morphine Morphine and fentanyl are the most commonly used opioids in the NICU population. the main systemic analgesics for moderate to severe pain provide both sedation and analgesia have a wide therapeutic window and decrease hemodynamic and metabolic stress responses, but they do not provide amnesia (use benzodiazepines) Most commonly used opioid analgesic Low lipid solubility, therefore relatively slow onset of action (6-8 minute after IV bolus) and peak effects (15 min) Morphine elimination t ½ (h): Preterm infants: 9 10 Term Infants: 7 Children: 3 4 (Saaranmaa E, Huttunen P, Leppaluoto J, Meretoja O, Fellman V. Advantages of fentanyl over morphine in analgesia for ventilated newborn infants after birth: A randomized trial. J Pediatrics 134[2], ) Fentanyl Fentanyl ctd synthetic opioid activity on µ 1 - and δ-opioid receptors highly lipophilic crosses the blood brain barrier rapidly, rapid onset of action (approx. 2 min) short duration of action (60 min) with bolus doses due to rapid redistribution to, and accumulation in, fatty tissues prolonged elimination with continuous infusions due to redistribution from fatty tissue in to plasma (context-sensitive half life) Tolerance develops rapidly, esp. with infusions vs. boluses causes less histamine release than morphine minimal hemodynamic effects chest wall rigidity may occur with rapid fentanyl IV boluses; administer bolus over 3 5 min. fentanyl is metabolized in the liver to inactive compounds; good choice in renal failure In adults fentanyl is approx x more potent than morphine, however neonatal studies have estimated a potency ratio of 13 to 20 Ketamine blocks N-methyl-D-aspartic acid (NMDA) receptors resulting in sedation, analgesia and amnesia the only drug that causes all three effects. shown to be safe and effective for sedation in pediatric critical care procedures increases muscle tone and blood pressure, thus maintaining hemodynamic stability does not cause respiratory depression and maintains respiratory drive Although apoptosis occurs in the brain of newborn rats, this was with doses that are 100 x of those used in clinical practice may not apply to human neonates receiving clinical doses Midazolam benzodiazepine - produces anxiolysis, sedation, amnesia, and muscle relaxation no analgesia Onset of action ranges from 2 to 6 min, lasting 1 hour after a single IV dose Caution when combining with opioids may cause respiratory depression, hypotension, and bradycardia has been known to cause a decrease in cerebral blood flow in preterm neonates Nasal/buccal absorption 0.2 mg/kg/dose

6 Approach To Prenatal Palliative Care Consult Explore parents understanding of condition and potential outcomes (eg. intrauterine death, death during labour/delivery, death following delivery potential time frames) Consider pre-drawn medications (typically fentanyl and/or midazolam) for nasal/buccal administration for possible pain, air hunger, restlessness Is home a possible care setting if baby survives for a few days? (See next slide on Palliative Care in the home) Autopsy/coroner/tissue donation If needed, develop an approach to discussing with siblings Bereavement follow-up Components of Palliative Care in the Home What death may look like Funeral arrangements Individualized Care Plan Advance Care Plan with DNAR Letter of Anticipated Death in the Home What to do after death Autopsy/coroner/tissue donation Bereavement follow-up Communication With Families Language use gentle, but direct language around death and dying be careful about suggesting a timeline Rather explore possible scenarios avoid referring to palliative care as doing nothing, or comfort care only Re-focusing of active and aggressive care in the context of a non-survivable condition Creating Memories / Developing Legacies Ethical Considerations Photography Videos Keepsakes Foot and hand prints A card or letter Children s Hospital Foundation Palliative Care Fund For support not covered by the health care system Resuscitation extreme prematurity, lethal anomalies Nutrition and hydration Withdrawing care Withholding care (non-escalation) Conflicts between health care team and family, or within health care team

7 Keeping The Momentum Recent Developments 2003: Canadian Network of Palliative Care for Children (CNPCC)- see March Pediatric Hospice Palliative Care Guiding Principles And Norms Of Practice, through joint work by the CNPCC and CHPCA 2006: 1 st major clinical textbook in pediatric palliative care, The Oxford Textbook of Palliative Care for Children. 2006: The Canadian Council on Health Services Accreditation (CCHSA) released in its standards for Hospice and End-of-Life Care The Royal College of Physicians and Surgeons of Canada is exploring core competencies in Pediatric Palliative Care There is increasing interest amongst physicians training in Pediatrics Case Study Prenatal diagnosis of Trisomy 13 with holoprosencephaly, cleft lip, hypoplastic left heart, and IUGR Parents desire a comfort approach Involvement of pediatric symptom management team prenatally issues of comfort, feeding, impact on siblings and family discussed SVD on LDRP Unit on a Monday at 1010 hrs Apgars 4 (at 1 and 5 min) At birth had decreased tone, lungs clear, limp and pale, eyes closed Issue of feeding arose on Tuesday at 0300 hrs attempted, but no suck Discussed issues of feeding on Tuesday at 1130 hrs as well, revisited physical changes expected 22 hrs after birth had some respiratory distress and discomfort Medication orders included (weight 2291 kg): Step 1: Fentanyl 1.25 mcg (0.55 mcg/kg) buccally q 15 min prn Step 2: Midazolam 0.46 mg (0.2 mg/kg) bucally q 15 min prn Step 3: If distressed min post Midazolam, repeat steps 1+2 Fentanyl given 8 times for respiratory distress (gasping, increased WOB, restlessness) Midazolam not needed Patient died comfortably with family present. Siblings (ages 2 and 6 yrs) had been in to visit Unit staff made footprints and provided family with time and space to take pictures