I want to try to take some of the pressure off those given the difficult task of delivering the diagnosis of Parkinson's disease (PD). Doctors are under an inordinate amount of stress to do the work they do. They are often falsely led toward God complexes by those they try to heal. This imbalance must be rectified to empower the person who has been diagnosed and relieve the doctor delivering the diagnosis.
The day of diagnosis is traumatic for many people. A research article from Baylor University found that 91% of surveyed clinicians thought delivering bad news was very important, but only 40 % felt they were properly trained to do so. Overall more than 50% of those diagnosed described a lack of sensitivity when the diagnosis was delivered and 50% reported there was no information shared on non-pharmacological approaches, such as physiotherapy or exercise - let alone improvisation or storytelling.
Doctors certainly need to be trained better for this moment. There are some practical techniques listed in the research article including
All of the approaches have valid and thoughtful ways of approaching this difficult situation. While the discussion of what to say and how much or little to say is important, the most important part of delivering bad news is listening and responding to how it’s received. Or as Drs. Noordegraaf and Bloem have put it, “sit back and tune in". The person receiving the news is in the position of not knowing. That combined with shock, fear, or perhaps relief, as some people have been hunting for years for a diagnosis to help them make sense of their symptoms, all make it crucial for the deliverer of the news to also be an expert listener. Just as no two people who receive a PD diagnosis are going to experience the same symptoms, different people are going to hear different things with and react in different ways to the diagnosis.
The foundation of expert listening begins with ensuring what we see, hear or understand from the sender is what’s intended. There are many reasons for miscommunication - mixed emotions, cognitive fog, anxiety, stress and more. Statements like “I notice” or “I heard you say” allow the person receiving the bad news to feel safe. They can then confirm, correct or restate what it is they feel to ensure the path of communication is clear. Establishing clear communication allows the person receiving the news to relax and trust they’re being cared for and can, therefore, access and share their feelings.
The other thing to keep in mind is that nothing is being solved on the day of diagnosis. Changing the mentality and the practical conversation to the idea that this is Day One on a new journey can help empower the person hearing the information. Framing living with Parkinson’s disease as a heroic journey can help the newly diagnosed person recognize their opportunity and choices in their life. This is a striking difference from being told, with any sort of authority, how PD will manifest over the course of the person’s life. Nobody knows that information. Giving the proper mindset, with activity, agency, and social engagement allows the newly diagnosed person to recognize their own power and helps them begin to make choices that can positively frame their lives.
A person with PD from Drs. Noordegraaf and Bloem's article said, “Sooner or later, persons with Parkinson’s disease will need to develop their own personalized hope narratives, with ingredients they can feed themselves on a daily basis."
Here's to taking control of the narrative of what it means to have PD in your life, whether you are the person with PD, care partner, family member or clinician. It is a hero's journey, but that doesn't mean you have to walk it alone.
For more information, please see:
The evidence-based Day One writing program inspired, in part, by material from Joseph Campbell's Hero's Journey.
Caveats And Practical Tips For Delivering A Parkinson's Disease Diagnosis by Dr. Indu Subramanian.
Jonny Acheson is the parkinsonsecrets.com web-artist, co-editor and he is also a doctor in the UK and a person with Parkinson’s disease.
The sheer wealth of information that has been underlined in this blog surpasses anything one could walk into a library and find. Unfortunately we live in a world where there are too few specialists. A sad but true fact I learned while doing my own research. Thus learning to forgive some of those doctors who handled my case over the years.
The perception of PD has changed drastically over the last three decades. Doctors are people. Some of these older doctors have received all kinds of different reactions. I believe some to even suffer from PTSD after some of those poorly delivered speeches. Validating the claim here that doctors need to be better trained to handle such situations. For the…