Sharing Sensitive News

Communicating Sensitive Subjects to Parents and Children

(Adapted from St. Benedict’s Hospice, Sunderland, UK; Kaye P. Breaking Bad News.  EPL Publications. 1995; and the readings listed below)

Steps in Sharing Sensitive News

Prepare

• Know the facts, what has happened, and what options are available
  Be humble. Recognize room for error in diagnosis and prognosis
• Set up a time to meet as soon as possible
• Shed personal baggage

Get started

• Meet face to face, if possible
• Include others at the parents’ request; if there is no one else there, consider whether or not someone should be there –
  • Should relatives or friends be invited? 
  • It may be helpful to have another support person there should relatives or friends be unavailable.  This might be a social worker or clergy member, or nurse the family recognizes as a helpful resource.
• Meet in a private location with a comfortable place to sit
• Allow plenty of time and avoid interruptions
• Initiate with normal courtesies, such as ‘How are you today?’  Assess the family's stress level and emotional state.  Ask/decide if this is a reasonable time to proceed.

Find family’s current level of understanding and emotional state

• Ask questions first!  What is known?  What is wanted?
• Elicit concerns and encourage expression of feelings

Find out how much the family wants to know

• The real issue is not, “Do you want to know?” but “In what detail do you want to know?”

Sharing the information

• Start from the parent’s or child’s starting point.
  • What they currently know and understand
  • What they have been told
• Summarize things to date
• Pause frequently to allow patient to absorb the information and to ask questions
• Reinforce correct understanding, using the family’s words where possible
• Give information in small chunks; be clear and simple
• Check understanding frequently and modify when needed (negotiate the agenda)
  • “Is this making sense?”
  • “Have I covered what you want to talk about?”
• Summarize, repeat important points; ask if the family wants you to go over anything again.
• Provide hope and optimism whenever possible
• Use diagrams and written information when possible
• Avoid medical terminology, or define and check for understanding when must use medical terminology
• Listen for the family/child responses and desires
  • Most doctors interrupt the patients within 30 seconds of speaking.  Be patient!
• Reinforce with resources for further information and personal availability to respond to further questions and concerns. Let them know they are not alone in this.
• Respond to family and child’s feelings – Identify and acknowledge their reactions.  Be prepared for a mix of emotions, such as
  • Sadness
  • Shock
  • Disbelief
  • Anger
  • Denial
  • Feeling of failure
• Do not be afraid to show emotion or distress yourself (within reason!)

Offer next steps and plan for future

• Distinguish the fixable from the unfixable, the known from the unknown
• Identify coping strategies and encourage/reinforce them
• Identify and reinforce parental stengths, build on family assets
• Encourage parents in management of their child's care
  • Being an advocate, Families and Providers Working Together
  • Care tools and resources
    Organizing Health Information
    Care plans and other tools
• Identify other sources of help and provide written contact information
  • Examples in Quick Key Contacts and County-specific Children with Special Needs Resource/Referral Lists in Resources by County
• Offer to link the family to parent-to-parent support and sibling support (a FRC or CSHCN Coordinator can help link the family to these supports; see your community resource list)
• Determine next steps and create a plan with the family

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Additional Thoughts

No one is expected to have all the answers

• If you cannot answer a question, do not evade it.  Indicate that you will make a note of it and attempt to find an answer.
• Utilize referral sources and specialists.
• Make the family a partner in finding answers.

Follow-up is important (phone, another appointment, email, other) for THREE REASONS:

• The initial information is remembered less than the way the information was given.
• Emotional adjustment takes time.
• It provides an opportunity to see other family members and support persons.

What to do when the patient/family breaks out in tears?

• Plan ahead – have tissues in the room and offer them.
• Do not act as if tears need to be stopped.
• Often it is best to simply wait for the person to stop crying, while acknowledging the tears and the emotions.
• If it seems appropriate, you can ask if the person would like to take a brief break and let you know when they would like to continue.

References

Delivering Difficult News by Francis Glascoe, PhD, at www.dbpeds.org/articles/detail.cfm?TextID=232

Mueller PS.  Breaking Bad News to Patients: the SPIKES approach can make this difficult task easier.  Postgraduate Med.  112(3):15f.  Sept 2002.

A Framework for Breaking Bad News.
www.skillscascade.com/badnews.htm

Buckman R.  How to Break Bad News: A Guide for Health Care Professionals.  Basingstoke.  Papermac, 1992.

Vandekieft GK.  Breaking Bad News.  Amer Fam Phys.  64(12):1975-1978.  2001.

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Resources

Delivering Difficult News in Sharing Concerns: Physicians to Parents

www.firstsigns.org/concerns/doc_parent.htm - bad_news

Communication Tips for Providers

National Center of Medical Home Initiatives for Children with Special Needs, American Academy of Pediatrics

www.medicalhomeinfo.org/tools/communication.html

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