Palliative Care In PICU

Transcription

1 Palliative Care In PICU Professor Lucy Lum University Malaya Annual Scientific Meeting on Intensive Care 15 August 2015

2 2 Defining Palliative Care: Mistaken perception: For patients whom curative care have failed and predicted to survive less than 6 months. WHO: An approach that improves QoL of patients and families facing life-threatening illness, - through the prevention and relief of suffering - by means of early identification, assessment and treatment of pain, and other problems, physical, psycho-social or spiritual.

3 3 WHO Definition of Palliative Care: The total active care of child s body, mind and spirit and involves giving support to the family. It begins when illness is diagnosed, and continues regardless of whether the child receives treatment directed at the disease. PC focuses on relieving suffering and improving QoL in all phases of life.

4 4 Initiative for Pediatric Palliative Care: Palliative care focuses on six domains: 1. Engaging with child and family 2. Relieving pain and other symptoms 3. Communication about treatment goals with the child and family; 4. Ethics and shared decision making; 5. Care continuity; and 6. Responding to suffering and bereavement.

5 5 Why is palliative care important in PICU? About 50 to 80% of pediatric hospital deaths occur in PICU. PICU deaths account for 3-8% of all PICU admissions. Median length of stay in PICU prior to death 2 to 13 days 40 to 65% of PICU deaths follow decision to withdraw or limit life-sustaining treatment (LST) 15 to 25% experience brain death >10% die without any limitation of LST or advance directives. Michelson KN, 2008

6 6 Integrating Palliative Care in Crit Care Setting 58% of PC patients: Initial consult encounter as inpatient; just under 20% had first consult in PICU. 65% still alive after 30 days. Expanded focus: - include those with serious or potentially limiting conditions. Ideally when a serious or potentially life-limiting diagnosis is made; important to offer an integrated model that continues throughout the course of illness, regardless of outcome.

7 7 Integrated Care? F o c u s CURATIVE INTENT o f C a r e PALLIATIVE CARE GRIEF SOCIAL PHYSICAL EMOTIONAL SPIRITUAL

8 8 Life-Prolonging Palliative Care Early palliative care compared to standard care for patients with metastatic non-small-cell lung cancer (n=151) Better quality of life Less depressive symptoms (16% vs 38%, p=0.01) Fewer patients received aggressive EOL care 33% vs 54%, p=0.05) Median Survival (11.6 vs 8.9 moths, p=0.02) Temel JS et al, NEJM 2010

9 9 Physicians confidence levels Confident in managing pain, respiratory distress, and other acute events at end-of-life Lower confidence in children with chronic complex issues Receptive to consultation: Family needs: Supporting family, transitions out of PICU, hospice care Address family expectations about prognosis Help families navigate uncertain futures. Feudtner et al, 2011; Jones et al, 2010

10 10 Improving the Quality of End-of-Life Care in the Pediatric Intensive Care Unit : Parents Priorities and Recommendations E. C. Meyer et al, Pediatrics 2006

11 11 Parent Perspective Questionnaire: Open-ended Questions 1. What was most helpful to you in getting through the time at the end of your child s life? 2. What was least helpful to you in getting through the time at the end of your child s life? 3. How can hospital staff improve their communication with parents at this difficult time? 4. What advice do you have for hospital staff members in helping parents during this difficult time? E. C. Meyer et al, Pediatrics 2006

12 12 Parents Priorities for Pediatric Palliative Care 1. Honest and complete information 2. Ready access to staff 3. Communication and care coordination 4. Emotional expression and support by staff 5. Preservation of the integrity of the parent-child relationship 6. Faith What we cannot handle is not knowing what is going on Set a regular time for office hours at the bedside There are too many doctors explaining things People need to feel that people really care, not that it s just a job Show more sincere compassion for parents and child s needs Prayers and services of rabbi E. C. Meyer et al, Pediatrics 2006

13 13 Communication: Multi-disciplinary Conferences Family members: Siblings & Extended family members Staff Primary physician (Oncologist/surgeon, etc) PICU staff doctors, nurses, sisters Palliative care team Others Medical team to meet to present a consensus for family Present the big picture Treatment plan A, B. Explore their understanding of disease Pain relief, psycho-social and emotional support

14 14 Family Dynamics: Who are the decision makers? Any conflicts within family? What are the issues within family? What is the child as a person? Do NOT have any pre-conceived ideas.

15 15 Case study MK 17-years old, relapsed disease with lung metastasis Parents keen for aggressive treatment - chemotherapy Patient was on hyper-hydration therapy, developed wet lungs, on top of severe lung metastasis Intubated for respiratory failure Failing lung function Sedation and analgesia morphine IVI Invasive vascular access and monitoring Non-invasive monitoring blood investigations Gastric feeding Intravenous fluid Continuous bladder drainage Inotropic support

16 16 Negotiations with parents for an extubation Parents harboured some hope of cure an adopted child, childless after 8 years of marriage Then mother had one biological son Relationship with adopted mother Oncologist: Hope of shrinking tumour with radiotherapy, improved lung function

17 17 Do we know what the child wants? How much pain does he have? What are his fears? How do parents deal with these? Parents become the spokesperson Override what child wants What have parents told him about his illness and prognosis? Does he understand what that means? He knows his parents are upset, does he go along with their wishes despite his own insight.

18 18 Negotiations for an extubation 2 Patient wished to die at home Patient wished to be extubated Parents worried that son would die if extubated Optimize lung function reduce IV fluid therapy, Non-invasive ventilation Mother asked: Would you re-intubate my son if he experienced breathing difficulty? Doctors asked: Should patient be re-intubated if he experienced breathing difficulty?

19 19 Goals of Care Admission to PICU: Intensive Care Intubated At time of death: Comfort Care Non-invasive ventilation Failing lung function morphine IVI Invasive vascular access and monitoring Non-invasive monitoring blood investigations Gastric tube feeding Intravenous fluid Continuous bladder drainage Fentanyl patch/oral morphine Removed Discontinued Removed, oral feeding Removed Removed

20 20 Care in the last days of life Diagnose irreversible dying Check all futile medication, investigations ceased Consider fluids for comfort but do not overload Plan for what might be needed, what not needed Keep comfortable, noise level Make sure family informed, aware and around Medical and nursing staff be sensitive to family s grief, quiet and respectful, give support and avoid being judgmental Pronouncement of death the FINAL Medical Act, do it with CARE Follow up visits

21 21 Palliative Care and SUPPORT 1. Social support Family members, colleagues, friends 2. Physical support Place to rest, refresh, access, quiet surroundings Make PICU like home 3. Emotional support The Final Good-bye; Grief 4. Spiritual support 5. Bereavement support

22 22 Conclusion Critical illness has life-long impact on child and family Uncertain prognosis PICU is a stressful environment for families Evaluate our palliative care practices Seek ways to improve Education and exposure to palliative care for trainees

23 THANK YOU FOR YOUR ATTENTION!