Communicating a Diagnosis

 

Key Facts

  • Prepare for the encounter, allow for sufficient time, and double-check your facts.
  • Patients often don't remember anything communicated to them after the diagnosis so have material in writing.
  • Express hope and the importance of a positive outlook.

 

Clinical Best Practices

  • Communicate the information seated in a quiet, private place.
  • Invite patients to have a family member present to hear the diagnosis.

 

Communicating the Diagnosis

  1. Be seated in a quiet, private area.
  2. Ask if the patient would like an accompanying person with them to hear the diagnosis.
  3. Ask the patient what they believe is going on - this checks the person's level of understanding.
  4. When giving the diagnosis "Parkinson's disease" ask the patient and or relative if this term means anything to them or if they know someone with this illness.  This will tell you if their background experience was positive or negative and what fears the patient may have.
  5. You can assume that most patients want to know:
    • What is happening to me?  The diagnosis and the pathophysiology;
    • Why is this happening?  Is there a known cause, genetics, etc;
    • What are you going to do to establish the diagnosis?
    • What is going to happen to me?
    • What are you going to do to help their symptoms?
    • What can they do to help their own symptoms?
  6. Remember to use simplified language.  Healthcare providers learn over 200,000 words in their first years of training.  The public does not have familiarity with these words.
  7. Ask if they have questions or they would like anything clarified or repeated that you covered.
  8. Express hope - exercise, positive outlook, intellectual stimulation are non-medical things to do to improve their function.
  9. Provide the information in writing - likely the patient and/or family member stopped hearing after the words, "Parkinson's disease".
  10. Refer them to the NPF website for information.