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Conferencia de la Dra. Joanne Wolfe sobre Cuidados Paliativos Pediátricos, en Paraguay (20-09-13)
1. Caring for Children with
Life-Threatening Illness:
Can we do better?
Joanne Wolfe, MD, MPH
Division Chief, Pediatric Palliative Care
Department of Psychosocial Oncology and Palliative Care
Dana-Farber Cancer Institute
Director, Pediatric Palliative Care
Children’s Hospital Boston
3. Objectives
Part I
• Scope of Pediatric Palliative Care (PPC)
• Scope of Suffering
Part II
• The Boston PPC Experience
Part III
• Adapting the PPC Model to Low and Middle
Income Countries
5. 15-19 years
25.3%
10-14 years
7.6%
5-9 years
6.4%
1-4 years
9.6%
Postneonatal
16.9%
Neonatal
34.3%
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
6. Percentage of total childhood deaths
by major causes
Unintentional Injuries
22%
Homicide & Suicide
8%
Other
33%
Cancer
4%
Respiratory Distress
2%
Heart Disease
2%
SIDS
5%
Short Gestation
8%
Complications of
Pregnancy
2%
Congenital Anomalies
12%
Placental Cord
Membranes
2%
IOM report 2003
7. Diagnoses in patients receiving PPC
0
5
10
15
20
25
30
35
40
45
G
enetic/Congenital
Neurom
uscular
CancerRespiratory
O
ther
G
astrointestinal
Cardiovascular
Renal
Im
m
unologic
Percent
Feudtner et al, Pediatrics 2011
9. Feudtner et al, Pediatrics 2011
Signs and
symptoms of
patients receiving
PPC services
10. Drugs received by patients receiving PPC
Feudtner et al, Pediatrics 2011
11. Technology in patients receiving PPC
0
10
20
30
40
50
60
70
None
Feeding
tube
CentralVenous
C
atheter
Tracheostom
y
Noninvasive
Ventilation
Ventilatory-dependent
Percent
Feudtner et al, Pediatrics 2011
12.
13. 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
14. 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
16. 0.0% 10.0% 20.0% 30.0% 40.0% 50.0% 60.0%
Pain
Fatigue
Drowsy
Irritability
Nausea
Anorexia
Sleep
Diarrhea
Vomiting
Nervousness
Sadness
Cough
Worrying
Concentration
Itching
Skin issues
Constipation
Dyspnea
Image
Dry mouth
Numbness
Sweating
Dysphagia
Dysuria
Child self-reported symptoms 20 weeks of follow up
Prevalence and proportion with moderate to severe distress
(n=704 surveys)
Mod-Sev distress
17. • 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
26. Primary vs Subspecialty PPC
• Primary
– Team provides interdisciplinary support
• Subspecialty
Clinical: more complex care
Education: enhance knowledge, skills,
behaviors and attitudes
Innovation and research: advancing the field
Advocacy: system wide changes
27. 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
28.
29. 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
30. 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
31. Core Team Members
Physicians (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 Team
Committee Members
ICU, NICU & BMT nurses
Ambulatory clinic nurses
Patient Care Coordinator
Parent representatives
Pain Team Specialist
Intensivist/Coordinated Care physician
Psychiatrist
Physical Therapist
Psychologist
Social worker
Chaplain
Child-life specialists
Pharmacist
Communication enhancement
specialist
Genetic Counselor
32. DFCI/CHB PACT Clinical Activity
0
100
200
300
400
500
600
700
New Consults
On-Going
Total Patient Census
Deaths
33. 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%
34. 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
41. 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?
42. 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”
43. Examples of Forbidden
Language
Frequently 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
44. 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
46. 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…
47. PACT Advocacy – Massachusetts
Pediatric Palliative Care Program
7
4
22
13
42
50
18
35
12
18 5
50. Knapp et al, Pediatric Blood Cancer 2011
Level 1 No known ppc activity
Level 2 Capacity building activity identified
Level 3 Localized provision of PPC
Level 4 Integration with main stream service providers
Levels of PPC provision around
the world
51. Levels of PPC provision around
the world
Knapp et al, Pediatric Blood Cancer 2011
52. 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
57. Study Question
1. Available resources.
2. Availabiliy and access to pediatric specialists
3. 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
58. 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
59. 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 services
Different 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
60. 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)
61.
62. 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
63. A Mission of Accompaniment
“It’s all very sad, but there’s a lot of collateral
beauty along the way.”
Loorie Moore (Mother)
Editor's Notes
When we think about a patient’s suffering, we generally conceptualize the family as the unit we are thinking about rather than just the patient.We conceptualize the threats to the family unit as being “Visible” and “Invisible.”These threats lead to suffering.As doctors, we need to be able to identify these threats, so that we can help to administer “Targeted interventions” and “Global Interventions” to guide the family to develop a new integrity.
When we think about a patient’s suffering, we generally conceptualize the family as the unit we are thinking about rather than just the patient.We conceptualize the threats to the family unit as being “Visible” and “Invisible.”These threats lead to suffering.As doctors, we need to be able to identify these threats, so that we can help to administer “Targeted interventions” and “Global Interventions” to guide the family to develop a new integrity.
The Core Ideals of palliative care are all a part of helping patients have a meaningful experience while coping with serious illness.Our core values include:Open communicationIntensive symptom managementTimely access to careFlexibilityPsychosocial and Spiritual SupportPatient oriented and family oriented careCare that can be delivered at any place and any time
While each member of the interdisciplinary team brings a unique skill and perspective to the care of the patient, the real strength of this model of care is that we have open communication with each other and share all information gathered and incorporate multiple perspectives into the recommendations we give our patients.For patients who are in the Inpatient Palliative Care Unit (or IPCU) at BWH/DFCI, we always have a pharmacist, social worker, NP, and MD as part of the rounding team. During our weekly interdisciplinary rounds, that same team meets along with an chaplain, ethicist, and representative from nursing.
