PEDIATRIC PALLIATIVE

CARE:

POLICY ISSUESDale Lupu, PhD –

dlupu@daleviewassociates.comMarch 3, 2011

Prepared for:

Children and Loss Class

GSEHD Counseling Department

CNSL 6179.10, Spring Semester

George Washington University

Pediatric Palliative Care

Acknowledgements:

Slides based on two presentations available through SlideShare – Thank you, colleagues!

Christian Sinclair, MD. http://www.slideshare.net/ctsinclair/pediatric-palliative-care-overview?from=email&type=suggest_download&subtype=0

Children’s Hospice & Palliative Care Coalition

http://www.slideshare.net/mrsbutterworth/chpccwebconference50109

Overview

Historical changes in experience of childhood

death - What is it like to have a child die?

Epidemiology of childhood death

It’s not just death – it’s also illness

Problems in serious illness and dying

How services can be organized

Nick Snow 1990-2006

TRANSLATION = I wanted ALL

my suffering to go away; to be a

normal kid again!! Maybe not

having to worry about PILLS all

the TIME! Having the thought

about I might die if I don't get

Cortef (an adrenal drug) in the 3-

hour time frame. That is a very

very stressful, scary thought to

have when you're a kid!

Historical Change

30% of all deaths in

children <5 years

old

2.2% of all deaths in

children 0-19 years

1900 2005

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Children living with life-

threatening conditions (LWLTC)

500,000 in US

Children grieving

(death or impending death of sibling, parent, family member

friend)

Number?

Childhood

deaths

53,000/yr in

US (2005)

Peds Deaths Peds Hospice

Deaths in hospice care: 36%

(2005)

58,300 deaths under age 19

(2.2%) (2005)

50% under age 1

Pediatric

hospice: 10%

2.5 million deaths in US (2005)

Differences between children and

adults in serious and terminal

illness Differences

Patient

Range of terminal illnesses

Trajectories of illness

Death is relatively rare

Developmental factors influencing pharmacology and physiology

Developmental factors influencing cognitive and emotional understanding

System

Clinical models of delivery

Funding mechanisms

Research paradigms

Educational initiatives

Emerging autonomy

Emotional strains on system/staff

Life threatening + curative potential

Cancers

Organ Failure

Inevitable premature

death

Cystic Fibrosis

Genetic disorders

Progressive conditions – curative potential

Neuro-degenerative

Batten Disease

Irreversible but non-

progressive

Cerebral palsy

San Filippo

Life threatening + curative potential

Cancers

Sepsis

Inevitable premature

death

Advanced Lung

Cancer

Pancreatic Cancer

Progressive conditions –

curative potential

ALS

Dementia

Irreversible but non-

progressive

Stroke

COPD

CHF

All Children

1-19yo

• Accidents

• Assault

• Malignancy

• Suicide

• Congenital

• Chromosomal

• Cardiac

• Neurologic

All Children

1-19yo w/CCC

• Malignancy (43%)

• Neuromuscular (23%)

• Cardiac (17%)

All Infants

• Congenital

• LBW

• SIDS

• Birth complications

• Injury

All Infants w/CCC

• Cardiac (32%)

• Congenital (26%)

• Pulmonary (17%)

• Neuromuscular (14%)

Percentage of Deaths at Home

Age Group 1989 2003

0-19 years 10% 18%

Infants 5% 7%

1-9 years 18% 31%

10-19 years 18% 32%

Response to infant deaths

CAPTURING A SHORT LIFE DOCUMENTARY FILM TRAILER (1:53

trailer)

http://www.youtube.com/watch?v=8vC7VFGp4gg&feature=related

NOW I LAY ME DOWN TO SLEEP (9 minutes)

http://www.youtube.com/watch?v=KCnIAzcI7po&feature=related

Area for Improvement

Pain and Symptom Management

89% of children experience “substantial” suffering in the last month of life.

>80% report treatment for pain

<50% report successful treatment for pain

(Wolfe, N.E.J.M., 342:326, 2000)

90% of children’s pain can be alleviated

(Komatsu, IPPC 2008)

Area for Improvement

Parents consider communication key.(Meyer, Pediatrics, March 2006)

Parents understand prognosis nearly 200 days after

physician recognition. This disparity hampers end of life

care. (Wolfe, JAMA, 2000)

Parents carry clinician’s words and behavior with them

forever.

Communication, Relating humanely

Area for Improvement

End of Life Choices, Continuity of Care

Most children die in the hospital, many in ICU

If death is from a treatment related cause,

chance of dying at home is almost zero.(Wolfe, NEJM, 2000)

Previously, no organized system to track

children and their care between hospital

and home

Institute of Medicine:

When Children Die (2002)

Palliative care seeks to prevent and relieve the

physical and emotional distress produced by a

life threatening medical condition or its

treatment

Help patients and their families live as normally

as possible

Provide timely and accurate information and

support in decision-making

World Health Organization (1998)

Care of child’s body, mind, and spirit

Starting at thepoint of diagnosis and

continuing regardless of whether curative

therapies are pursued

Expertise of a multidisciplinary team along with

family and community resources

Pediatric palliative care can be delivered

concurrently with life-prolonging care or as the

main focus of care and is treatment that

should be started early in the trajectory of the

condition. It preserves the integrity of the

family during the disease

progression, addressing anticipatory grief and

bereavement support following the death.

Children’s Hospice and Palliative Care

Coalition (2007)

Children who die

Chronic complex

conditions

Life-threatening

Life-limiting

Pediatric Palliative

Care

1• I am seriously ill

2• I am seriously ill but will get better

3• I am always ill but will get better

4• I am always ill but will not get better

5• I am dying

0-2 years

• Awareness of separation, tension

• Provide physical comfort, familiar people and objects

2-6 years

• Death as reversible, sleeping, magical thinking

• Concrete information, dispel misconceptions

7-12 years

• Death as final, personal, unpredictable

• May want graphic information

• Inquire for fears, encourage access to peers

12+ years

• Death as final, universal, but distanced

• May address unrealized plans, explanations

• Allow for emotions and privacy, support independence

SettingPrivacy, Involve others, Sit down, Attentive,

Calm, Listening, Available

Perception Before you tell, ask

InvitationRespect the patient’s right to know or refuse

information

KnowledgeUse lay language, avoid technical

terms, give in small amounts

Empathy Listen for and identify emotions

Strategy and

SummaryMake clear expectations about the plan

Care needed in communities

Children with complex, chronic

conditions spend most of the last year of

their lives at home

This means that high quality pain and

symptom management needs to be able to

be delivered in their communities, where

they are (Feudtner, JAMA, 2008)

More facts and figures

A major complaint from parents of

children who die is fragmentation of care

Children receive care at many different sites

Health care providers rely heavily on

parents/caregivers to provide continuity

Families have to tell their stories over and over

Quality and accuracy become the family’s burden

How Did This Happen?

Federal hospice eligibility regulations:

were developed in 1970s for adult cancer patients

require that a doctor and patient/parent sign an agreement stating that the patient has less than 6-months to live (if the disease follows its normal course)

require that patients stop all treatment intended specifically to cure their disease or prolong their lives

Nick's Dream:

Pediatric Palliative Care Benefit

Nick Snow - Nevada Union High School Sophomore with neuroblastoma.

Saw first-hand that federal hospice rules do not work for children.

In 2003, went to Washington D.C., spoke to congress. Worked with the Children’s Hospice and Palliative Care Coalition (CHPCC), and Governor Schwarzenegger in California.

Under The Nick Snow Hospice and Palliative Care Act (AB-1745), California authorized to submit a federal waiver for more expansive pediatric palliative care beyond traditional hospice.

The Nick Snow Act

“I don’t see why we need to give up all of these services just because we want to get better.”

Nick Snow, the boy who flunked hospice…twice!

You can download a copy of the Nick Snow Act and read about it in more detail:

http://www.childrenshospice.org/coalition/ab-1745-the-nick-snow-childrens-hospice-palliative-care-act-of-2006/

Key CHiPPS

Recommendations Sole admission criteria to pediatric palliative care = pt not

expected to survive to adulthood

Interdisciplinary approaches address the whole person and family

Provisions of support for staff who care for children with life-limiting illness

Post-death care needs to be integrated with health care design and funding

Financial incentives for pediatric palliative care must be developed

Support for pediatric assent and the mature minor doctrine

Community education regarding pediatric palliative care and DNR orders

http://bit.ly/DVtzB

California’s Pediatric Palliative Care Benefit

Part 2 – The Waiver

What is the waiver?

A federally approved Medi-Cal demonstration project that enables children with certain CCS eligible medical conditions to:

receive curative treatments AND

home and community-based palliative care services provided by hospice agencies along with home health and other appropriate service providers

PPC within the context

of California’s Benefit

Concurrent with curative therapies

Family-centered communication

Focus on quality of life and relief of

suffering

Use of multidisciplinary team

Key Reading

• Friebert S. NHPCO Facts and Figures: Pediatric

Palliative and Hospice Care in America.

Alexandria, VA: National Hospice and Palliative

Care Organization, April 2009.

• When Children Die: Improving Palliative and End-

of-Life Care for Children and Their Families. 2003

Board on Health Sciences Policy.

• Oxford Textbook of Palliative Care for Children

• The Hospice and Palliative Medicine Approach to

Caring for Pediatric Patients – UNIPAC series -

AAHPM

Online Resources for Pediatric

Palliative Care

Fast Facts: http://bit.ly/cj9UJ

NHPCO Pediatric Palliative Care

Standards: http://bit.ly/4qpV9

NHPCO Pediatrics Facts & Figures:

http://bit.ly/Dj7oX

Pallimed: http://www.pallimed.org