Part IIA: Closer Look
What are the challenges for the PCP in discussing this difficult diagnosis with this family?
- Assisting the parents in processing a potentially emotionally upsetting diagnosis
- Explaining medical terms, such as “Autism Spectrum Disorder,” and the severity levels in a manner parents will understand
- Guiding parents to see the value of early intervention and overcoming fears of having their child “labeled”
What are the challenges for the parents?
- Acceptance: Even for parents expecting the diagnosis, having it said by an expert is shocking
- A natural reaction for a family is shock and denial
- Understanding complex information about Tommy’s diagnosis and next steps
- Guilt and concern they may have “caused” Tommy’s ASD
- Fear for Tommy’s future
- Concern about Tommy being “labeled”
Did you note any jargon used by the pediatrician that might not be understood by the parents?
- Autism Spectrum Disorder or ASD
- Early Intervention (EI)
Special note about the video:
This case was written before release of the DSM-5 in May 2013. The child in this video was diagnosed with PDD-NOS, which is no longer a diagnosis found in the DSM. Most children who previously would have been diagnosed with PDD-NOS fall under the new category of Autism Spectrum Disorder in the DSM-5. People who received a diagnosis of PDD-NOS or Aspergers prior to release of the DSM-5 keep their diagnosis. The written script reflects the change and therefore is not an exact match to the dialogue in the video.
What are some tips for delivering difficult news?
Set Up the Interview
- Use a quiet exam room without distractions
- Ask parents if they are comfortable having the discussion with the child present
- Sit down with parents
- Keep interruptions to a minimum and allow parents to ask questions
- If possible, let parents know in advance you have news they may not want to hear alone, so they have the option to bring along a support person. This is especially important for single parents
Ask parents if they have read material on the Internet or talked with friends or family members about their child. This can determine where parents are in their own thinking about their child.
A “Warning Shot,” Then the News
- Let parents know you have difficult news
- Use appropriate level of vocabulary
- Get to the point as quickly as you can, so there is time for questions, and to repeat anything that might be confusing
Address Parental Emotion with Empathy
- Expect emotion from parents and respond when appropriate, recognizing they are hearing difficult news
- Anticipate possible reactions: silence, disbelief, tears, denial, or anger
- Four parts of empathic response:
- Observe the response
- Identify the emotion to yourself (sadness, anger, etc)
- Identify the reason for the emotion. Ask the parent, even if it seems obvious, because it may be related to previous experience with the diagnosis, or another life stressor that makes this news more difficult
- Acknowledge and validate the emotional reaction, being as warm and thoughtful as possible; families remember this
Be Prepared To Discuss Your Honest Opinion about Their Child.
- Explain where “on the spectrum” their child lies
- Do not prognosticate: children on the autism spectrum have a wide variety of outcomes and it is not possible to predict the outcome for one child
- Encourage hope, and stress the child will make progress with appropriate intervention
- Acknowledge the difficult aspects of an uncertain prognosis
- Ask parents how they will explain what you have told them to their family members. That will help you understand what message they have taken from you, and provide you an opportunity to clear up any misconceptions.
- Offer a follow-up meeting to review the news a second time, perhaps with another family member present.
- End the session with a clear plan for referrals and follow up
- Write steps down for parents, so they can leave with something to refer to later