CLINICAL CASE WITH INSIGHT ON

PRACTICAL, DIAGNOSTIC AND ETHICAL

ASPECTS

NATHALIE ANDERSSON CHRISTINE FONTEYNE

HUDERF UKZKF

11TH SYMPOSIUM OF THE BSPHO

NOVEMBER 2017

MultidisciplinaryTEAM

Support fonction

@ HOME & Hospital

Follows the patient & family

Evelyne

Chemotherapy/su

rgery

October 2015Birth

30/03/201

2

Diagnostic of

Neuroblastoma MS

July 2012

Spontaneous involution

October 2012

First relaps

Neuroblastoma IV

August 2015

Second combined

relaps 7 months after

BMT

October 2016

Hospitalisation

for pain

management &

fever

March 2017Anouncement of

palliative care

& pediatric

palliative care

team

April 2017

24/04/2017

Discharge ward

27/04/2017

readmission

Death

13/05/2017

Advanced

directory

8/05/2017

BMT

9/03/201

6

Question : Would you have announced palliative care at this moment?

Children withlife-limitingconditions

and theirfamilies

Preventionand relief of

suffering

ImprovingQuality of

life

Physical, psychosocial and spiritual

needs

WHO 2007-2014

AAP 2013

IMPACCT

Palliat Med 2015

Caring for patients with life-threatening and life-limiting disease

Supportive and palliative care : a part of care paradigm throughout the course of

illness

Integrative and dynamic model

Smith TJ. J Clin Oncol 2012 A A P. Pediatrics 2013

Outcomes improved with pediatric

palliative care involvement ( EBM)

High quality palliative care (control of symptoms pain, dyspnea, anxiety)

Understanding of the goals and values of patient and families

Psychosocial and spiritual support for children and families

↓ hospital admissions

↓ death in intensive care units

Location of death (home)

Prolongs survival (adults)

Wolfe J. J Clin Oncol 2008 Greer JA. J Clin Oncol 2012 Kassam 2015 Friedrischdorf 2015 Temel JS. N Engl J Med 2010

Belgian legislation

2016

The Paediatric Palliative Screening

Scale

Octobre

2016

March

2017

April 2017

Domain1 1+3 4+3 4 + 3

Domain 2 1+2 4+4 4 + 2

Domain 3 1+0+2 4+4+4 4+ 4+4

Domain 4 0+0 4 4

Domain 5 1+0 3 3

Score 11 31 32

PaPaS Scale

EvelyneSymptoms ( last 2 months ) Management

Pain

( abdomen, bone, neuropathic)

Omeprazole

Paracétamol, (ibuprofen)

Tramadol

Fentanyl patch

Butylbromide

Oral morphine and PCA morphine

Dexamethasone

Gabapentine

Clonazepam

Massage

Relaxation

Hot pack

Nausea, vomiting Ondansetron

Alizapride

Octreotide

Haloperidol

Fatigue Blood transfusion

Anorexia No diet restriction

Parenteral nutrition

Anxiety Prazepam

Massage

Relaxation

Nitrous gaz

Midazolam

Evelyne

Announcement of

palliative care

Coordination of

care

Home care

Advance care

plan

Advanced

directory

12/04/2017 18/04/2017 08/05/2017

13/05/2017Mailing list

Multidisciplinary

meeting

Feasability @ home

EOL ( symptom

management, location of

death)

Communication

diary

Wishes

Respite

DNAR

Transportation

EOL

Bereavement

13/05/2017

Debriefing

Family follow up

( oncology team,

Globul’Home, PPC

team )

Interdisciplinary approach

- Child and family-centered care

- Collaborative alliance

- Open communication

- Mutual support

- Common goals

- Common language

- Leadership

Ward

Nurses

Oncologist

École

DUBOIS

Home

physician

Palliative

team

Social

workerEvelyne and

family

Psychologist

Specialists

Physiotherapist

Globul’Home

Play therapist

Evelyne and family

Long term trusting relationship : child, parents and brother ( atelier fratrie)

Common goals ( quality of life)

Open communication in the family and with the team

Evelyne’s needs : transparent language, respect choices, relieve her suffering

Mother’s needs : to be informated, to be proactive, optimize Evelyne and Matheuz QOL, respect of her limitations, respite support ( Villa Rozerood)

Father’s needs : to be protected (bereavement of loved ones)

Matteusz’s needs : to be informated, to be heared ( psychologist and « atelier fratrie »)

M.S.Weaver, Palliative Medicine 2015

Complex challenges

Home : demand during one weekend for her

anniversary but no anticipation (stop IV medication)

: fiasco ( pain, anxiety on behalf of everyone) and

ward admission

Villa Rozerood = success because of anticipation (

transportation,drugs, material, primary care,

continuity of care)

Decision-making :

Respect of autonomyParents considered the de facto decision-makers for their

children

Beneficience and nonmaleficienceBest medical practices

The best interest of the child

ETHICAL GUIDELINESBeauchamp and Childress

Principles Biomedical Ethics 2013

Advanced directory

Medical

Diagnosis, prognosis, clinical

status , treatments and

investigations

Patient and parents wishes

Quality of life Context

Legal, ethical

Multidisciplinary team meeting

EOL

On the ward

Anticipation of

symptoms and

advanced directory

Brock Paediatr Blood Cancer 2016

L’ENFANT Nature du lien à l’enfantPersonnalité/caractère de l’enfantCommunication parents / enfantMaladie (type, durée, génétique)Projet de vieSpiritualité

LE PARENT Santé physiqueTraits de personnalité / caractèreEstime de soiGestion de problèmesCapacités de compréhensionCapacités de verbalisationCapacité à faire face au stressCapacité à demander de l’aideVision de la vie en généralSpiritualitéReligionSens donné à la maladieSens donné à l’accompagnementSentiment de compétence // maladie

LA FAMILLE NUCLEAIRE Adaptabilité familialeCohésion familialeCommunication intrafamilialeCommunication famille – soignantsSanté des autres enfantsReconnaissance de son rôle // maladie

LES SITUATIONS PROFESSIONNELLE ET FINANCIERE EmploiCollèguesFlexibilité du cadre professionnelRessources financières

LE SYSTÈME SOIGNANT Temps d’attente du diagnostic PEC symptômesHAD (faisabilité, mise en place)Individualisation de la PEC (soins, relation)Projet de vie pour l’enfantRôle parental auprès de l’enfantQualité de l’informationQualité de l’écouteRelation parents-soignantsDisponibilité soignantsCohérence entre soignantsPEC fratriePEC besoin de répitOffre de soutien spirituelOrientation vers les aides psychosocialesAnticipation de non-réa et du décèsContact SAMUSuivi post deuil L’ ENVIRONNEMENT RELATIONNEL ET

CULTURELVie sociale (famille, amis, collègues)Disponibilité pratique famille – amisDisponibilité relationnelle famille – amisSanté physique et psychique famille – amisGroupe religieux ou philosophique (rituel…)

Vécu parental

des SP et du

décès de

l’enfant

FACTEURS DE DEUIL COMPLIQUE

Brutalité du décès, mort violente, suicide

Répétition des deuils et séparations, deuils non résolus

Troubles de la personnalité, antécédents psychiatriques

Isolement psychosocial

DECES

Annonce

Implication dans le prise de décision

Conflits

Présence Symptômes

Respect souhaits de l’enfant et des parents

Take home message

Pediatric palliative care team

Complementary

May involve second opinion regarding

• Decision making

• Symptom management

• Coordination of care

• Home care