Palliative Care For Children

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Palliative Care For Children

• Where We Are, Opportunities For Progress

Mike Harlos MD, CCFP, FCFP
Professor and Section Head, Palliative 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
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Objectives

• To consider the definition of pediatric
  palliative care
• To consider where pediatric palliative care may
  fit in the care of seriously ill children
• To consider similarities/differences with
  palliative care for adults
• To review the prevalence of symptoms in children
  living with life-threatening illness
• To consider strategies to improve expertise and
  system capacity in addressing the needs of
  children with life-threatening illness, their
  families, and their professional caregivers.

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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 the goals and expectations of patient and
  family, and by accepted standards of health care.

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Clinical
Directives
Timing
Setting
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Thank you for giving me aliveness
Jonathan 6 yr old boy terminally ill boy
Ref Armfuls of Time Barbara Sourkes
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Common Trajectory Of Decline In Progressive
Life-Limiting Illness In Children
From presentation by Joanne Wolfe at the 16th
International Congress on the Care of The
Terminally Ill
Functional Status
Decline
Crises (Scary Dips)
Death
Time
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Prognostic Irrelevance

• There may be unwillingness to even consider the
  possibility of death from perspective of patient,
  family, and/or care team,
• Service availability should not only accommodate
  prognostic uncertainty, but should not require
  acceptance of a threatened life simply an
  awareness that there is suffering that might be
  helped

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Palliative Care The What If? Tour Guides

• 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)
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Addressing The What-Ifs Silence Is Not Golden

• Children (even young children) are very
  perceptive, and can tell when something serious
  is happening
• Even when pursuing cure for their child, parents
  are often aware in their heart of hearts that
  things may not unfold as hoped for
• Palliative Care has a role in
• helping families navigate through difficult
  decisions, at times conflicted about which course
  is best for their child path of least regret
• ensuring that comfort and quality of life are
  minimally affected by the impact of illness,
  tests, and treatments
• facilitating communication about fears and
  worries, and open dialogue about what to expect

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What intimidates practitioners in adult
palliative care when faced with caring for a
dying child?

• The drugs
• The talking stuff

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Titrating Opioids In Treating Pain Children
Titrating Honest Information In Communicating
With Children

• Look Up Recommended Dose
• References regarding potential developmental
  understanding of issue
• Guidance from parents

Look Up Recommended Dose
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Talking about Death with Children ctd
Kreicbergs et al NEJM 2004 351(12)1175-1186.
Did you talk about death with your child at any
time?
Overall
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73
Sensed Child Aware Of Dying
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53
Did Not Sense Child Aware
87
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Association for Children with Life-Threatening or
Terminal Conditions and their Families
Groups Of Children Potentially Requiring
Palliative Care

• Life-threatening conditions for which curative
  treatment may be feasible but can fail.
  Palliative care may be necessary during periods
  of prognostic uncertainty and when treatment
  fails.
• Examples cancer irreversible organ failures of
  heart, liver, kidney.
• Conditions where there may be long periods of
  intensive treatment aimed at prolonging life and
  allowing participation in normal childhood
  activities, but premature death is still
  possible.
• Examples cystic fibrosis, muscular dystrophy.
• Progressive conditions without curative treatment
  options, where treatment is exclusively
  palliative and may commonly extend over many
  years.
• Examples Battens disease, mucopolysaccharidosis.
  
• Conditions with severe neurological disability
  which may cause weakness and susceptibility to
  health complications, and may deteriorate
  unpredictably, but are not usually considered
  progressive.
• Examples severe multiple disabilities, such as
  following brain or spinal cord injuries,
  including some children with severe cerebral
  palsy.

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Palliative in Parallel

• Palliative care for children should not be
  exclusive of ongoing cure-focused care
• Can be involved as a parallel process, with a
  variable profile depending on goals of care and
  clinical circumstances
• There are some situations where one could argue
  that the standard of care should require
  involvement of a palliative service eg
• Phase One Clinical trials
• Organ Transplant waiting lists

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Various Patterns Of Pediatric Palliative Care
Involvement
Cure-Oriented Disease-Focused
Palliative
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What Symptoms Do Children With Advanced Illness
Experience?
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The Measurement Of Symptoms In Children With
CancerCollins JJ, Byrnes ME, Dunkel IJ, Lapin J,
Nadel T, Thaler HT et al. J Pain Symptom Manage
2000 19(5)363-377.

• n 160 cancer patients receiving treatment
• aged 10 18 yo
• 30-item patient-rated instrument (MSAS 10-18)
• Inpatients averaged 13 symptoms, outpatients 6.5
• Patients who had recently received chemotherapy
  had more than double the symptoms of those who
  had not

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Symptoms At The End of Life in Children With
Cancer
Wolfe J. et al, NEJM 2000 342(5) p 326-333
80
70

60
50
40
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Successfully Treated ( Of Affected Children)
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10
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Nausea And Vomiting
Dyspnea
Pain
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Pain In Advanced Childhood Illness
Symptom Prevalence At Study Entry And In Last
Month Of LifeUK Childrens Cancer Study
Group/Paediatric Oncol Nurses Forum
SurveyGoldman A et al Pediatrics 2006 117
1179-1186
Abstract from the 7th International Symposium on
Pediatric Pain Stenekes S, Hughes A, Grégoire
MC, Frager G 2006
Breau LM, Camfield CS, McGrath PJ, Finley GA. The
incidence of pain in children with severe
cognitive impairments. Arch Pediatr Adolesc Med
2003 157(12)1219-1226.
Engel JM, Jensen MP, Hoffman AJ, Kartin D. Pain
in persons with cerebral palsy extension and
cross validation Arch Phys Med Rehabil 2003
84(8)1125-1128.
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Pain Prevalence In Advanced Adult Illness
Solano JP, Gomes B, Higginson IJ A comparison of
symptom prevalence in far advanced cancer, AIDS,
heart disease, chronic obstructive pulmonary
disease and renal disease J Pain Symptom Manage.
2006 Jan31(1)58-69
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Bottom Line
Advanced life-threatening conditions are
associated with a consistently high prevalence of
pain i.e.
Things that are bad enough to kill you usually
hurt
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Pediatricians Sense Of Preparedness For Practice
Lieberman L, Hilliard LI Medical Education 2006
40 539546
n 239 pediatricians certified in Canadian
training programs between1999 and 2003
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Pediatric Patients Receiving Palliative
Care in Canada

• Retrospective review of medical records and
  survey of 7 PPC programs and 1 freestanding
  hospice
• 317 children cared for during 2002
• 123 children died in 2002
• 32 children died in 2003
• 43.9 children died at home
• National persepctive Between 5-12 of the
  children who could benefit from palliative care
  received services from one of these programs

Widger et al. (2007). Archives of Pediatric and
Adolescent Medicine
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2003 College Of Physicians And Surgeons Of
Manitoba Child Health Standards Committee
ReportChildhood Deaths In Manitoba in 2003
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
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WRHA Palliative Care Program Pediatric Symptom
Management Palliative Care Service

• 102 total referrals (since Nov 2006)
• 6.06 years average age of referral
• Location of death (47 total)
• - 20 Childrens (4 NICU)
• - 5 St. B NICU
• - 5 Home in Winnipeg
• - 4 Home in rural RHA
• - 3 in rural health care facility
• - 3 St B LDRP and LD
• - 3 Womens LDRP and LD
• - 2 VGH (1 in ER, 1 on wards)
• - 2 unknown locations (rural home or health
  care facility)

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The Challenge Building Capacity

• There are minimal requirements and limited
  opportunities to train in pediatric pain
  management or palliative care.
• This is in spite of the fact that children living
  with a cancer diagnosis have been shown to have
  up to 13 different symptoms many of which were
  the result of tests and treatments these same
  physicians receive training to inflict but not to
  alleviate
• Opportunity to develop a national Canadian
  initiative aimed at
• consolidating efforts that have been ongoing in
  Pediatric Palliative Care
• through education, ensuring the sustainable
  capacity of the health care system to meet the
  needs of children with life-threatening illness,
  their families, and those who provide their
  health care.

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Keeping The Momentum Recent Developments

• 2003 Canadian Network of Palliative Care for
  Children (CNPCC)- see http//cnpcc.ca
• March 2006- Pediatric Hospice Palliative Care
  Guiding Principles And Norms Of Practice, through
  joint work by the CNPCC and CHPCA
• 2006 1st 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 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 is there amongst
  physicians training in Pediatrics

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Next Steps

• Ongoing development of Pediatric Palliative Care
  / Pediatric Symptom Management Services
• Develop accredited, standardized training
  opportunities for physicians, nurses, and other
  health personnel in palliative care for children
• Core competencies for residents in Pediatrics,
  Palliative Care, ? Family Medicine (particularly
  rural)
• Explore potential for adaptation of present
  Palliative Care residency to meet needs of those
  wishing to focus on Pediatric Palliative Care
• Jointly accredited by Royal College and the
  College of Family Practice
• Flexibility exists in elective time and research
  time to focus on peds, as well as the months of
  training in medical and radiation oncology
• Experience working in adult pediatric palliative
  care programs will be necessary in order to see
  sufficient volume
• ? Potential subspecialty of pediatrics, pediatric
  anesthesia, palliative medicine

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Sometimes it seems youre just not making the
progress youd like to be
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Canadian Virtual Hospice Share Collaborate
InnovateorThe Best Kept Secret in Health Care
Lets change that!
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What we do
The Canadian Virtual Hospice provides support and
personalized information about palliative
and end-of-life care to patients, family members
and health care providers.
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Website Activity

• 25,000 30,000 visitors per month
• Visitor populations
• 50 Health care providers
• 46 Families and patients
• Largest user provinces Ontario, BC, Alberta
• User Satisfaction surveys over 90 highly
  satisfied

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Ask a Professional

• Direct access to palliative care specialists
• Physicians, clinical nurse specialists, social
  worker, spiritual care advisor
• More than 800 questions asked and answered
• 50 health care providers 46 families and
  patients

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Supporting Canadians
How do I tell my three-year-old granddaughter
that her mother is going to die imminently of
breast cancer?
In their response, the team outlined how to
discuss death in an age-appropriate way and also
provided a roadmap for the family for navigating
what lay ahead.
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Supporting Canadians
A university student said that she had just
learned her father had an incurable and
aggressive cancer and that her mother was
falling apart. She didnt know what do to
help her mom. She later contacted CVH to say that
her father had died and she wanted to speak at
the funeral, but shed never been to a funeral
and she didnt know if it was appropriate for her
to speak at it or what she should say.
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Asked and Answered

• Searchable database of over 80 questions asked by
  Canadians and answered by the clinical team
• Wealth of information on common questions
• Helps frame discussions on difficult issues

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Articles and Resources

• Over 40 accessible, evidence-based articles
• Symptom management
• Emotional and spiritual health
• Caregiving and visiting
• Decision-making and Final Days
• Helps people to navigate the health care system
• Fosters understanding of what to expect from
  quality palliative and end-of-life care
• 600 local programs and services 800 books,
  links, DVDs, etc

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Innovation Hub

• Researcher Portal facilitates connections
  researcher/researcher researcher/clinician
• PallNet free online collaborative tool
• Create private networks
• Wikis, blogs, library, group calendar
• The Exchange
• National KT platform authored articles
• Showcase latest advances in palliative care
• Endorsed by CIHR
• Share Collaborate - Innovate

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Also in For Professionals

• Tools for Practice
• 150 clinical tools developed by teams across
  Canada
• Protocols, assessment and evaluation tools, etc
• Courses and Conferences
• Take A Bow
• For Volunteers

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The Canadian Virtual Hospice provides support and
personalized information about palliative and
end-of-life care to patients, family members and
health care providers.
www.virtualhospice.ca