Conferencia de la Dra. Joanne Wolfe sobre Cuidados Paliativos Pediátricos, en Paraguay (20-09-13)
-
Upload
principitojuanpi -
Category
Health & Medicine
-
view
496 -
download
1
Transcript of Conferencia de la Dra. Joanne Wolfe sobre Cuidados Paliativos Pediátricos, en Paraguay (20-09-13)
Caring for Children with Life-Threatening
Illness: Can we do better?
Joanne Wolfe, MD, MPHDivision Chief, Pediatric Palliative Care
Department of Psychosocial Oncology and Palliative CareDana-Farber Cancer Institute
Director, Pediatric Palliative CareChildren’s Hospital Boston
Disclosures
• No financial interests to disclose.
Objectives
Part IScope of Pediatric Palliative Care (PPC)Scope of SufferingPart IIThe Boston PPC ExperiencePart IIIAdapting the PPC Model to Low and Middle Income Countries
Part I
15-19 years25.3%
10-14 years7.6%
5-9 years6.4%
1-4 years9.6%
Postneonatal16.9%
Neonatal34.3%
In the US, 500,000 children live with complex chronic conditions
55,000 children ages 0 to 19 die annually
IOM report 2003, NEJM 2004
Percentage of total childhood deaths by major causes
Unintentional Injuries22%
Homicide & Suicide8%
Other33%
Cancer4%
Respiratory Distress2%
Heart Disease2%
SIDS5%
Short Gestation8%
Complications of Pregnancy
2%
Congenital Anomalies12%
Placental Cord Membranes
2%
IOM report 2003
Diagnoses in patients receiving PPC
0
5
10
15
20
25
30
35
40
45
Genet
ic/Con
genita
l
Neurom
uscula
r
Cancer
Respira
tory
Other
Gastro
intes
tinal
Cardiov
ascu
lar
Renal
Imm
unolog
ic
Per
cen
t
Feudtner et al, Pediatrics 2011
Survival of patients receiving PPC
Feudtner et al, Pediatrics 2011
Feudtner et al, Pediatrics 2011
Signs and symptoms of patients receiving PPC services
Drugs received by patients receiving PPC
Feudtner et al, Pediatrics 2011
Technology in patients receiving PPC
0
10
20
30
40
50
60
70P
erce
nt
Feudtner et al, Pediatrics 2011
Hope for cure, life extension, a miracle…
Hope for comfort, meaning…
Individualized blending of care directed
at underlying illness
and
physical, emotional, social, and spiritual
needs of child and family
with continuous reevaluation and adjustment
End-of-life care
Bereavement care
Pediatric Palliative Care
Suffering
Suffering is a specific state of distress that occurs when the intactness or integrity of the person is threatened or disrupted. It lasts until the threat is gone or integrity is restored.
The meanings and the fear are personal and individual, so that even if two patients have the same symptoms, their suffering would be different.
Eric Cassel, MD
“Visible” threatsLife-threatening illnessSymptomsEmotional Factors
“Invisible” threatsDisruptions from "normal life”Emotional factorsExistential concernsSocio-demographic concerns
SUFFERING
A Framework of Suffering
PATIENT
PARENTS
Family’s Self
Integrity
SIBLINGS
PainFatigueDrowsy
IrritabilityNausea
Anorexia Sleep
DiarrheaVomiting
NervousnessSadness
CoughWorrying
ConcentrationItching
Skin issuesConstipation
DyspneaImage
Dry mouthNumbness
SweatingDysphagia
Dysuria
0.0% 10.0% 20.0% 30.0% 40.0% 50.0% 60.0%
Child self-reported symptoms 20 weeks of follow upPrevalence and proportion with moderate to severe distress
(n=704 surveys)
Prevalence
• Study to detail the everyday occurrence of pain in non-communicating children with cognitive impairment
• 34 parents completed daily pain diaries for two weeks, each day for 5 defined periods rating whether their child had been in pain and its duration and severity.
• Results– 74% of children experienced pain on at least one day– 68% with moderate or severe pain on at least one
day– 12% with mod-severe pain lasting greater than 30
minutes on 5 or more days– NO CHILD WAS RECEIVING PAIN MEDICATION
Distress in cognitively impaired, non-communicating children
Stallard et al Arch Dis Child 2001
Additional Domains of Family Suffering• Spiritual distress (Robinson, Pediatrics 2006)
• Psychological distress (Rosenberg, JAMA Pediatrics 2013)
• Financial distress (Dussel, JCO 2011)
Parental Psychological Distress
Rosenberg et al, JAMA Pediatrics 2013
Family Financial Distress
Bona et al, J Pain Sx Mgmt 2013
“Visible” threatsLife-threatening illnessSymptomsEmotional Factors
“Invisible” threatsDisruptions from "normal life”Emotional factorsExistential concernsSocio-demographic concerns
SUFFERING
Targeted Interventions(e.g. symptom treatment trials)
Global Interventions(e.g. MA PPC Network)
A Framework for Easing Suffering
PATIENT
PARENTS
Family Integrity
PATIENT
SIBLINGSPARENTS
“NEW”Family
Integrity
SIBLINGS
Part II
Joanne Wolfe, MD, MPH
The Boston Pediatric Palliative Care
Experience
Core Ideals
Meaningful Experiences
Open Communication
Intensive Symptom
Management
Timely Access to Care
Flexibility
Psychosocial and Spiritual
Support
Patient Oriented,
Family Oriented
Any place, Any time
Interdisciplinary Team
Patient and
Family
Physician
Nurse Practitioner
Nurse
ChaplainSocial Worker
Pharmacist
Child-life Therapist
Primary vs Subspecialty PPC
• Primary– Team provides interdisciplinary support
• SubspecialtyClinical: more complex care
Education: enhance knowledge, skills, behaviors and attitudes
Innovation and research: advancing the field
Advocacy: system wide changes
PACT Beginnings
• 1997: Demonstration project in pediatric oncology
• 2001: Expanded to care for children with non-cancer diagnoses
• 2003: Improved outcomes in children with cancer, greater institutional support
• 2003: Fellowship program
PACT Strategies• Consults• Education/Training
– Across all disciplines– Interdisciplinary fellowship
programs– Visitor program
• Interventions– Direct admission policy– Emergency medication work sheet– Inpatient orders for uncontrolled
pain, dyspnea and/or agitation– “Intervention orders for persons
with advanced Illness” – Comfort Corner
• Bereavement programs– Family– Caregivers
• Research program
PACT Physician Fellows
Jenny Mack Fellowship Director, Pediatric Hematology/Oncology DFCHCC, MA
Craig Hurwitz Director, Palliative Care, Dell Children’s Hospital, Austin, TX
Todd Pearson Medical Director, Pediatric Palliative Care, Cook Children’s Medical Hospital, Fort Worth TX
Christina Ullrich PACT and Stem Cell Transplant Physician, DFCHCC
Julie Hauer Medical Director, Seven Hills Pediatric Center, MA
Bradd Hemker Palliative Care and Heme/Onc Attending, Helen DeVos Children's Hospital, Grand Rapids, MI
Tamara Vern-Gross Proton Beam Fellow, Wake Forest, Baptist Health, NC
Jennifer Linebarger Medical Director, Pediatric Palliative Care, Children’s Mercy Hospitals and Clinics, Kansas City, MO
Kate Nelson Health Services Research Fellow, Hospital for Sick Children, Toronto, ON
Kevin Weingarten Palliative Care Physician and Medical Ethics Fellow, Hospital for Sick Children, Toronto, ON
Elisha Waldman Medical Director, Pediatric Palliative Care, Hadassah Hospital, Jerusalem, Israel
Todd Barrett Adult and Pediatric Palliative Care, Cedars-Sinai, Los Angeles, CA
PACT Social Work Fellows
Kristen Caminiti Social Worker, Children's National Medical Center, Washington DC
Katie Sweeney Social Worker, Connecticut Hospice, CT
Kate Lindy Social Worker, Intermediate Care Unit, BCH, MA
Arden O’Donnell Social Worker, Adult Palliative Care, DFCI/BWH, MA
Kate Evans Social Worker, Pediatric Hospice, Denver ,CO
Nicholas Purol Social Worker, Merrimack Valley Hospice, MA
Jordan Miraglia Social Worker and Bereavement Coordinator, Hands of Hope, Hospice Care of South Carolina, SC
Bryce Moffet Social Worker, Boston Health Care for the Homeless, MA
PACT Nurse Practitioner Fellows
Ashley Atkins Pediatric NP, Joslin Diabetes Center, Boston, MA
Gaby Harrison Pediatric NP, Merrimack Valley Hospice, MA
Meghan Tracewski Pediatric NP, Pediatric Advanced Care team, Children’s Health Care of Atlanta, GA
Anna Roche Pediatric NP, DFCHCC, MA
Macallagh McEvoy Pediatric NP, Seattle Children’s Hospital, WA
Core Team MembersPhysicians (2.6 FTE) Nurse practitioner (2.0 FTE)Social worker (1 FTE)Administrators (2.0 FTE)Trainees:
Physician Palliative care fellow (2 FTE)Nurse practitioner fellow (1 FTE)Social work fellow (1 FTE)
PACT Interdisciplinary TeamCommittee MembersICU, NICU & BMT nursesAmbulatory clinic nursesPatient Care CoordinatorParent representativesPain Team SpecialistIntensivist/Coordinated Care physicianPsychiatristPhysical TherapistPsychologistSocial workerChaplainChild-life specialistsPharmacistCommunication enhancement
specialistGenetic Counselor
DFCI/CHB PACT Clinical Activity
FY 01
FY 02
FY 03
FY 04
FY 05
FY 06
FY 07
FY 08
FY 09
FY10
FY11
FY12
13A0
100
200
300
400
500
600
700
New Consults On-Going
Total Patient Census Deaths
Referring Services FY 2012 173 New Patients
Onc; 47; 27%
Pulm; 5; 3%
Gen & Metab; 22; 13%
Cardio; 30; 17%
Neuro; 63; 36%
Other; 7; 4%
Patient/ family and provider satisfaction
Data source: Family satisfaction survey as of 2/10/12, n=39
Aspect of Care Weighted Average (1-5, 5 is highest score)
Concern and caring to child 4.9
Symptom management 4.3
Emotional support to child 4.6
Concern and caring to family 4.9
Emotional support to family 4.4
Included in decision-making 4.7
Recommend PACT 3.9 (1-4, 4 is highest score)
• Example scores from the patient/ family satisfaction survey
• Example scores from the provider satisfaction survey
Aspect of Care Weighted Average
How valuable is it to have PACT 4.82 (1-5, 5 is highest score)
Would you recommend PACT to a colleague 3.87 (1-4, 4 is highest score)
Aspect of Care Weighted Average (1-5, 5 is highest score)
Concurrent consultation by PACT No PACT consultation
Management of physical symptoms such as pain, nausea, dyspnea 4.33 3.88
Management of psychosocial distress of patients and families 4.36 3.92
FatiguePain
Dyspnea
Poor Appetite
Nausea/vomiting
ConstipationDiarrh
ea0
20
40
60
80
100
Per
cen
t of
Ch
ildre
n
Symptom Prevalence Suffering
Wolfe et al. NEJM 2000.
Before
After…
PPC Saves Resources!Results of Pre-Post Analysis
Rates Pre-Service Post-Service p Value
Inpatient Stays/year (95% CI) 4.64 (4.3, 5.0) 3.72 ( 3.4, 4.1) <0.001
ED visits/year (95% CI) 0.89 ( 0.7, 1.1) 0.57 ( 0.4, 0.7) 0.003
Bed Days/year (95% CI) 44.17 ( 43.1, 45.3) 42.37 ( 41.3, 43.4) 0.019
Inpatient Stays/year
ED Visits/year0.0
1.0
2.0
3.0
4.0
5.0
Pre-Service Service
Rate
/yea
r
Bed Days/year40.0
42.0
44.0
46.0
48.0
50.0
Pre-Service Service
Rate
/yea
r
PACT Pearls…
What are the five cardinal questions?
Goals of Care Discussion
1. Tell us about your child, what is s/he like as a person?
2. What is your understanding of your child’s illness?
3. In light of your understanding, what’s most important to you?
4. What are your hoping for? What are your worries?
5. Where do you find your strength?
Choose your words carefully
“Similar to scalpels for surgeons, words are the palliative care clinician’s greatest tools. Surgeons learn to use their tools with extreme precision, because any error can be devastating. So too should clinicians who rely on words”
Examples of Forbidden LanguageFrequently used phrases:
What would you like us to do?
The parents signed a DNR
The patient is DNR
Narcotics
Alternatives:
Based on my understanding of your goals, I would recommend…
A resuscitation status
order was placed in
the chart
Pain medications such
as morphine, opioids
Strategies to Ease Distress
Live as long as possible
Live as long as possible and as well as possible
Live as comfortably as possible
Differential diagnosis Differential diagnosis Differential diagnosis
Intensive assessment Targeted assessment Limited-target assessment
Intensive treatment Targeted treatment Flexible and at times empiric treatment
Intensive follow-up Intensive follow-up Intensive follow-up
Guided by Goals of Care
Partnering with Community
Massachusetts Pediatric Palliative Care Legislation May 2006
Monday, February 26, 2007
Help and hope
New palliative program offers ‘total approach to care’ for children being treated for serious illnesses – and their families…
PACT Advocacy – Massachusetts Pediatric Palliative Care Program
7
4
22
13
42
50
18
3512
18 5
Always maintain hope!
Part III
Knapp et al, Pediatric Blood Cancer 2011
Level 1 No known ppc activityLevel 2 Capacity building activity identifiedLevel 3 Localized provision of PPCLevel 4 Integration with main stream service providers
Levels of PPC provision around the world
Levels of PPC provision around the world
Knapp et al, Pediatric Blood Cancer 2011
Availability of palliative care services for children with cancer in economically diverse regions of the world
• 262 completed questionnaires from 58 countries (response rate, 59.8%)
• Regular users of Cure4Kids (St. Jude)
Delgado et al European J of Cancer 2010
Physician-reported availability of specialized services to their patients
Physician rated quality of palliative care elements
Physician responses to the following statements
Comfort care medications available to more than 50% of respondents patients
Study Question
1. Available resources.2. Availabiliy and access to pediatric specialists3. Availability and access to drugs (opioids and other
drugs).4. Degree of integration of palliative care practices into
pediatric cancer care• Symptom Control • Medical decision making processes• Care provided to families that need to migrate• Advanced care planning and care at the end of life• Location of death• Bereavement
5. Palliative care specialist’s role
Assessed Domains
Is palliative care provided to children with advanced cancer in Argentina?
Dussel et al
PPC Providers PPC Teams (n=8) PPC Specialists (n= 6) PPC providers with less than 2
years of experience (n= 7) Adult PC providers (n=3) “Obliged” PPC providers (n=5) No PPC provider identified (n=7)
Available Resources
Oncology teams PPC teams NGOs
Insufficient staff
Low interaction between oncology teams
(hematologists/oncologists)
Interaction with other teams:
is lower with pain specialists, PPC providers and social service
is higher with psychological area
High regional and institutional variability
High staff turnover (lack of funding, emotional impact of the task, etc.)
Low interaction between PPC teams across the country
Wide range of servicesDifferent agendas between
NGOs and health providers
Networking between NGOs and health providers improves their interaction:
> interaction> equity in access to services provided by NGOs
Resistence to NGOs presence in hospitals
Under utilization of NGOs resources
Available Resources
Opioid Availability
• Intravenous morphine was available in all institutions while oral morphine was available in 88% of visited centers and methadone in only 35% of institutions.
• Other opioid drugs useful for cancer pain treatment such as oxycodone were not available in any of the visited centers.
• Key informants identified at least two provinces that do not have opioids at all (not included in this sample).
• Specialists reported problems with treatment options, e.g. opioid rotation.
“We have few tools, here we have morphine, or morphine, and we have morphine as well ... or morphine ... In other words, I have nothing! If I have to rotate opioids, I can’t. At this moment I have one [patient] who suffers from hallucinations [secondary to morphine], she lives 70 km away and I don’t know how to help her; [silence] with the few tools we have, we do a lot.” (PPC specialist)
Summary
• PPC involves an extra layer of interdisciplinary support
• Simple strategies can go a long way• Internationally, there is much work to be
done to ensure that every child with a life-threatening illness has access to basic PPC.
Thank you
A Mission of Accompaniment
“It’s all very sad, but there’s a lot of collateral beauty along the way.”
Loorie Moore (Mother)