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Neonatal Palliative Care- case studies and Approach

Neonatal Palliative Care- case studies and Approach. A presentation for a tertairy level NICU team, based around recent shared caseload. Jo Griffiths 22 nd August 2013. Overview. What is palliative care / What is neonatal intensive care? Case discussions Practice and practical issues

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Neonatal Palliative Care- case studies and Approach

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  1. Neonatal Palliative Care- case studies and Approach A presentation for a tertairy level NICU team, based around recent shared caseload. Jo Griffiths 22nd August 2013

  2. Overview • What is palliative care / What is neonatal intensive care? • Case discussions • Practice and practical issues • Challenges

  3. What is palliative care? Palliative care for [fetus, neonate or infant] with life limiting conditions is an active and total approach to care, from the point of diagnosis or recognition, throughout the child’s life, death and beyond. It embraces physical, emotional, social and spiritual elements and focuses on the enhancement of quality of life for the [neonatal infant] and support for the family. It includes the management of distressing symptoms [provision of short breaks] and care through death and bereavement. ACT 2009

  4. ACT 2009

  5. What is Palliative Care? (WHO, TFSL, BAPM) • Active, total care of patients & their families • Addresses physical, psychosocial,emotional, spiritual concerns associated w/ illness • Requires interdisciplinary collaboration • Goal is achievement of best possible QOL for patients & their families • Applicable throughout course of care; concurrent w/ attempts to prolong life

  6. Life-altering changes in expectations

  7. Two Major Goals of Critical Care • To save the lives of salvageable patients with reversible medical conditions • To offer the dying a peaceful and dignified death Kollef MH. In: Curtis and Rubenfeld, Managing Death in the ICU, 2001

  8. What is going through the minds of parents entering the foreign world of the NICU?

  9. What are the goals of postnatal palliative care? • To help families with making choices about after birth care: • In the best interests of the baby • Incorporate their Social/personal/religious beliefs • To prevent and relieve suffering • To support the best possible quality of life, regardless of the stage of illness or the length of that life.

  10. Challenges • When • Who • Managing uncertainty • Joint planning for survival • Supporting wishes for place of care • Encouraging the ‘scary leap’ out of NNU • Having ‘That’ talk • Our own feelings and beliefs • Empowering parents & offering choice • Practical challenges

  11. CASES

  12. Case 1: AT • Term infant with HIE : Thick meconium. Poor apgars. • Required I&V, cardiac compressions, adrenaline, cooling, AEDs. • STEPS team asked to meet with family to discuss place of care / wishes • NG fed, no swallow, poor airway control. • Family expressing desire not to prolong life and to avoid suffering

  13. Issues • Parental understanding, parental values • Burden vs benefit • What is suffering • Immunisations • Place of care • Weaning monitoring / level of nursing • Empowering parents to care • Dealing with uncertainty about death life • Cultural aspects • Working life

  14. Responding to Uncertainty, Early Intro of Palliative Care • Maintain realism & hope • Provide intensive pain & symptom management • Describe clinical condition as a whole • Evaluate benefits vs. burdens of treatments • Affirm parents’ efforts, love

  15. Parents’ Perspectives Parents need to maintain a parenting role: changing nappy, bathing, lotion, cuddling, kissing Appreciate recognition of child as individual, likes and dislikes, dreams for the future, no matter how small Want to be treated as partners, not as “visitors”, Contro, 2002 Need continuity of care to avoid need for “hypervigilance”, Dokken 2002, Heller, 2005 Need parent-to-parent networking (IOM, 2004)

  16. Suffering • When the burden outweighs the benefit, (dependent on the values of the patient and family, not HCP or society at large) • Uncertainty is harder for parents to cope with than known bad outcomes • Sometimes identification is difficult; • Concern about potential suffering can be as disabling as actual suffering

  17. Team’s Roles in Medical Care • Determine diagnosis • Make best estimate of prognosis • Determine all relevant medically appropriate, legally and ethically acceptable options • Elicit family philosophy, overall goals • Assist families to consider the choices through the lens of their priorities and make recommendations for care goals based on this and the physician’s experience • Ensure involvement of MDT to address physical, social, emotional, spiritual suffering

  18. Team Ethical Obligations in Decision-Making • Acknowledge personal values and biases in recommendations • Recognize there is no “right” answer • Remember the family lives with the decisions forever

  19. In practice • Discussion regarding parental wishes and fears • Exploration of choices – place, time, cares • Quality experiences – bath, walks, cuddles • Reducing monitoring

  20. Discontinuing No-longer-beneficial ICU Interventions • Discontinue bloods • Discontinue monitors • Discontinue weights • Discontinue IV fluids, feeds, antibiotics and other therapies not directed at comfort • Remove medical devices not needed • Invite to bathe, change clothes, take photos, hold, etc • Move to private, family-centered location

  21. Plan for AT Evolved over 2 weeks • Monitoring discontinued • Move to bassinet • Ty hafan childrens hospice • Increasing parental confidence • MDT meetings • ECP

  22. Emergency care plan • Completed with parents after discussions in hospital and hospice • Wanted comfort & support of child, suction, airway positioning, oxygen but no intubation, ambulance or hospital admission. • Discussed what to expect if deteriorating and possible causes • What the family should do • Who is available to help • 1st contact at time of death • Also discussed uncertainty – possibility of surviving long term with disability

  23. Palliative care and Disability or End of life? • Disability (DDA) • Physical or mental impairment that has a substantial and long term adverse effect on the ability to carry out normal day to day activities • Palliative care • Care for children with life threatening of life limiting conditions • Life-limiting conditions: No reasonable hope of cure and from which children or young people will die • Life-threatening conditions: Curative treatment may be feasible but can fail Children with disability Children with palliative care needs

  24. Timing AWA/Jones and Walker Partnership

  25. Curative/life-prolonging therapy Presentation Death Relieve suffering (hospice)

  26. Therapy to Modify Disease (curative, life prolonging, or palliative in intent) End of Life Care (Hospice) Bereavement Care Palliative Care Presentation Death Therapy to Relieve Suffering And/or Improve Quality of Life Acute Chronic Advanced Life-threatening Illness Continuum

  27. Case 2 • Term infant with HIE and poor respiratory drive. • Emcs, fetal bradycardia • Poor apgars at birth. • Severe neurological insult, central & obstructive apnoeas • Differing parental expectations. • Differing needs of family members.

  28. Differences to AT • Infant’s abilities • Timing ‘actively dying’ • Family dynamics • Extended family • Family perceptions

  29. Discussions • Parents ‘Shell shocked’ • Grandparents encouraging mum to consider alternatives • Anxieties around needs of other children • Discussed Ty Hafan children’s hospice • Support in the community - Neonatal outreach nurse / palliative care consultant. • Advanced care planning • Support around death and bereavement

  30. DIFFICULT DISCUSSIONS • Same principles are essential to empower families. • As end of life is imminent, time constraints can occur & the luxury of reflection may not be possible.

  31. Language w. Unintended Consequences • Do you want us to do everything possible? • Will you agree to discontinue CARE? • It’s YOUR decision • I think we should stop aggressive/ curative therapy/ treatment/ support • There is nothing more we can do

  32. Helpful Language • I wish things were different • I hope he gets better, too…, but I think it is very unlikely • We have tried everything that might help and unfortunately, he is too sick to respond. Perhaps we need to consider alternative goals of care

  33. Communicating Prognosis • Physicians markedly over-estimate prognosis • Accurate information helps patient / family cope, plan • increases earlier access to hospice, other services (common lament), possibility of home death • Offer a range or average for life expectancy, acknowledge limits of prediction • hope for the best, plan for the worst • better sense over time • Reassure availability, whatever happens

  34. Rapid transfer to hospice • Challenges • Hospice family support team able to prioritise • Practicalities of extended family • Transfer • Car / ambulance • Will he survive the journey? • Police notification • Practical support in Hospice • Symptom control anticipation • Anticipatory prescribing • Medical cover

  35. OUTCOMES AWA/Jones and Walker Partnership

  36. What we want • Ensure time to gather supporters, family • Good symptom control. • Ensure plans for celebrations, rituals • Unlimited visitation • Reaffirm decisions, reassure nothing else will work • Prepare family for what the patient will look like, ask them to consider how they want the day to go • Memories – hand prints, painting, photos

  37. FK • Spent 3 days in the family flat at Ty hafan • Parents only for the first night, then joined by siblings and grandparents • Lots of photos taken, hand prints etc • Had a bath • Went for a walk in the gardens • Siblings engaged at their individual level with time to play and chat with play team. • Died in mums arms after many, many prolonged apnoeas.

  38. Symptom management • Minimal anticipated need • Access to analgesia, hyoscine and anti-epileptics • Care plans shared with hospice team • Consultant review next day • Telephone advice over weekend.

  39. Poor respiratory drive • Access to anticholinergics, importance of positioning • Explain to family exactly what will happen (red,white, blue, gasping or no breathing,) • More distressing to us than the infant. • Duration of survival, minutes to hours or days

  40. Anticipate and Treat Symptoms to Rapid Resolution • Gasping at end of life • Opioids only proven therapy for dyspnea • Do not shorten life span, even in this scenario (Wall and Partridge, Pediatrics, 1997) • Titrate to effect

  41. AT • 1 week in Ty Hafan • Parents supported to feel more comfortable in being primary carers • MDT – introduction of wider team, including Community nursing and therapists • Discharged home with PPC home visits • Remains under PPC review, but main care with Community teams.

  42. Ongoing discussions about uncertainty. • ECP remains in place. AWA/Jones and Walker Partnership

  43. Stages of palliative care planning in the neonate BAPM 2010

  44. Families Benefiting from Palliative Care • Chronic, life-limiting condition • Uncertain outcome • Potential for severe disability • Delivery at limits of viability • Presence of life-threatening anomalies • Overwhelming illness not responding to disease-directed intervention • Families of stillborn or miscarried fetuses

  45. Case 3 EM • Refered antenatally following diagnosis of Edwards syndrome in utero. • Support from Ty Hafan pre-birth • Discussions re parents wishes , joint plan with obstetricians, neonatal team and PPC. • Sadly lived only a short while after birth • Ongoing bereavement support

  46. When to consult? • A condition incompatible with life • A condition incompatible with long life • A family struggling about what to do • An infant at the limits of viability • When a family asks . . .

  47. Barriers to Palliative Care • Continued confusion that PC = hospice=death • Death = failure to health care professionals • Societal expectation that children don’t die • Inadequate PC training & experience of providers • Focus on “life-prolonging” interventions, not providing CARE • Paucity of evidence base, esp LT follow up of families

  48. Symptom control • Advanced care planning • Antenatal palliative care • Consecutive planning & uncertainty • Compassionate extubation • Ethics • End of life care

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