Joanne Cacciatore, Ph D, MSW, FTAngela O’Neil, MD

Facing the Death of a Child:Perinatal and Pediatric Palliative Care and Support

Introductions. . .

It always starts with a story. .

Karla & Theo’s Love Story. . . .

Abnormal

What do you wish would have been done

differently?

How information is given.

TestingTesting

Who should give information?

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With or without parent input?

Parent concerns

People who have not had a child die cannot understand that.

They can try to understand, they can attempt to imagine what it’s like, they can absolutely be helpful and supportive and witness our pain without trying to change it.

But they cannot know.

Children with Life-Threatening Conditions

Epidemiology of Childhood Death

2011 data 6.9 million children died

(2.6 million/yr stillbirths)73% infants <1 (n=5m)

52% stillbirth (n=2.6m) 20% within first 24 hrs (n=975k)14% between 1-30 days

(n=732k)14% between 1 -12 mo

(n=732k)7.5% age 1-4 (n=516k)5.3% age 4-9 (n=365k)14.2% age 9-19 (n=980k)

Froen, Cacciatore, et al., 2011. The Lancet Series; Carter, Levetown and Friebert. Palliative Care for Infants, Children and Adolescents. Second Edition. 2011.

Infant/Child Death

<Age 11 to 44 to 99 to 19

Effect of Palliative Care in the Hospital

Increased hospice discussion (22% more)

Earlier DNR order (6 days)Fewer deaths in the ICU (16%

less)Child suffered less pain (19%)Parents felt more prepared

during child’s last month of life and at death

Wolfe, J, Hammel JF, Edwards KE, Duncan J, Comeau M, Breyer J, et al: Easing of suffering in children with cancer at the end of life: is care changing? J Clin Oncol 26(10):1717-1723, 2008.

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Active, total care of child’s body, mind and spiritBegins when illness is diagnosedContinues regardless of whether or not a child receives treatment directed at the diseaseAddress physical, psychological & social distressMultidisciplinary approachProvided anywhere, including the home

WHO Definition of Palliative Care

Appropriate for children and families with life-threatening illness

Enhances quality of life Intends to neither hasten or postpone

deathAny child with life limiting disorder

WHO Definition of Palliative Care

To have care of Palliative Care team-

The child does NOT need to be:Dying or actively dying On Hospice“Giving up hope” or “Doing nothing”DNR and/or DNI

The child can be:Receiving curative treatment Receiving complex careHoping for a miracle Local or long distance patient

Who Should Get a Peds Pallliative Care consult?

Serious illness affects:Patient quality of lifeSibling growth, development, and behaviorParental quality of life (esp bereavement)Interpersonal relationshipsFinances and careerFamily structureStructure of home Individual and collective stress levels

Why consult Palliative care early?

Effect of Critical Illness on Parents

Altered parental roleFear of child’s sufferingFear of child’s deathUnknown long term outcomeInconsistent informationMinimal communication Interpersonal relationshipsConcerns over economic outcomes

Needle, JS, O’Riordan, M, Smith, PG. Parental anxiety and medical comprehension within 24 hours of a child’s admission to the PICU. Pediatric Crit Care Medicine 10(6), 2009, 668-674.

Perinatal Palliative Care Program Goals

• To help families understand the diagnosis andprobable outcomes for their baby• To help families make decisions based on thelove that they have for their baby• To assist families in cherishing the timebetween the diagnosis and death of their baby• To honor the unique and special qualities ofeach baby• To emphasize the quality of life over thequantity of life• To reduce the emotional, spiritual andpsychosocial suffering using interventionssensitive to cultural, religious and personal beliefs

Services are additive to care already in progress

Supportive, not a substitute How can we help? -How can we help the FAMILY?

Focus on psychosocial dimension, ethical end of life decision making and alleviation of distressing symptoms

Continuity of care

Palliative Care Team

Perinatal Palliative CareFetal or neonatal diagnosis of life limiting anomalyExtreme prematurity (22-24 6/7 week gestation) wishing to

pursue comfort care Critically ill neonates refractory to medical treatment

Pediatric Palliative CareTerminal diagnosis of life limiting disorder or diseaseTreatment and management of painDisclosure

Palliative Care Team

Interdisciplinary Team MembersDoctorNursingChild LifeChaplain or other spiritual leaderPsychologySocial Work

Palliative Care Team

“Unity is strength… when there is teamwork and collaboration, wonderful things can be achieved.”-Mattie Stepanek (1990-2004)

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I am a grieving mother, a bereaved mother who chooses to continue to live.

I can only hope that my life can somehow reflect even a small bit, the beauty and love I was so privileged to touch when I met my son..

and shared in his life, and in his death.

The love of a parent is not contingent upon the amount of time we had with our child.

Love simply cannot be measured in time.”

Joanne Cacciatore