Delivering Difficult News to Families

Define Children with Special Health Needs
“Children who have or are at risk for chronic physical, developmental, behavioral and emotional conditions which require health and related services in type and amount not usually required by children”

Continuum of specialized services
these children may need
Medical and Nursing
Therapeutic
Educational
Family support and social services
Child care
Early intervention
Special Education
Medical equipment
Transportation
Financial

Diagnostic considerations before delivering difficult news
Is this a progressive condition
Is this a genetic problem
Is this a static condition
Is there therapy /treatment
Is this a developmental norm which might improve

Delivering Difficult News
“There is no one way”
Family may be prepared for bad news
Family may have come to be reassured
Diagnosis may come as a shock
Family may need information as to why they should be concerned
Parents may be under pressure from family or the legal system but are not interested
Family may have developmental disabilities and may not comprehend

Effective communication
Verbal and non -verbal
Develop a trusting relationship
Remember to introduce yourself with a hand shake and address parents by name
Avoid professional distance
Make eye contact
Do not appear distracted or rushed and speak slowly
Ensure privacy

Delivering difficult news
Show that you care and be authentic
Recognize how giving difficult diagnosis affects you as a health professional
Parents often relate that the direct approach was jarring
Its best to discuss their concerns review your findings and any tests and how you came to the conclusion

Delivering difficult news
LISTEN TO PARENTAL CONCERNS
Become familiar with concerns
Review and clarify all information provided
Be thorough and GET THE WHOLE PICTURE
Bring both parents and care giver into the evaluation.
If possible include grand parents or older siblings
If spouse not present send notes, contact person by phone or let family record on tape
Include person when appropriate

Delivering Difficult News
(continued)
Translate medical jargon
Be clear, concise and avoid confusing information
Be specific and use appropriate terms
Be aware of what the diagnosis means to this family
Offer hopeful discussions
Identify family support systems, (grandparents , family, church, social systems friends etc) and coping mechanisms

Delivering Difficult News
(continued)
Be sensitive to the family’s response
Reach out to parent or child with a touch
Allow quiet time for parents to confirm what has been said; when people are in crisis they do not hear after the initial diagnosis.
Acknowledge parents emotional response
Acknowledge what you do not know but would be willing to find out

Delivering Difficult News
(continued
Be open and non-judgmental
Express empathy and concern and be supportive
Discuss choices and options
Respect family values strengths and competence
Be aware of cultural differences and religious beliefs
Give families time to accept , deny, grieve and be angry

Delivering Difficult News
(continued)
Share complete information
Send your report
Be honest. Consult if necessary
Offer to follow up on medical investigations and contact family
Incorporate developmental needs
Discuss plan of action and who are the contact people, provide phone numbers

Delivering Difficult News
(continued)
If possible have a nurse or social worker so that follow up can be provided and help access resources and answer financial questions
Offer to call as a follow up either to discuss with spouse or answer questions
Provide handouts or contact number on how you can help
Parents need to leave with some hopeful information and a feeling that you care.

Support Strategies
Help family identify child’s strengths and abilities
Acknowledge their courage and competence
Build a team relationship
Build confidence ,courage and comfort
Assist family in taking control and face challenges
Be caring and compassionate
Assist in making a plan.
Acknowledge family’s grief

Coping mechanisms and family strengths
Financial
Intact family
Support systems, spiritual and religious beliefs
Acknowledge cultural diversity
Advocacy
Accessibility to services

What does the family expect
Understanding child’s problem
Plan of action short and long term goals
Help them maintain control
Assistance with finances and insurances
Respect , honesty, integrity, compassion confidence and competence

Attitude
Acceptance
Awareness
Avoid anger
Avoid judgment
Avoid pity
Remember each Child has a Name PERSON FIRST! Disability Second

Provide a medical home for the child
Follow up in a few days - a week should always be planned
If parents request a second opinion try to identify another consultant for them and be open for them to pursue this
Assist them with community resources / other parent groups/ and financial services as needed.