Now that I’ve gotten your attention, you’re probably curious about why “It’s Showtime” belongs on a PD Blog. Read on. First, let me set the stage. This blog examines the challenges and opportunities of the medical office visit.
Visits to physicians can be an experience that leads to anxiety for many reasons. To begin with, the person with Parkinson’s (PWP) and care partner may not agree on the goals of the visit. What is the most pressing issue? Who will present it to the doctor? What are other problems or questions that need discussion? In past visits, does the physician typically involve both the PWP and care partner?
It is important to plan ahead! Setting the agenda for the visit is complicated enough but add to that the pressure of time. Consider these statistics. The average time spent with the physician in the United States is between 15 and 18 minutes. Typically a patient comes to the appointment with 6 concerns they hope to cover. The longest problem gets about 5 minutes of attention. That leaves under 2 minutes for each of the remaining topics when you factor in the actual exam taking about 3.5 minutes! Finally, consider this, on average patients are interrupted after 18 seconds of talking!
A myriad of demands on healthcare providers have led to the harsh reality that appointments get more and more compressed. In this climate, how can the PWP maximize the visit? That brings me to “It’s Showtime!” I came up with this zingy term, as a way to capture comments from care partners that were often repeated in my clinical social work practice in our PD Center of Excellence. Now that this experience has a name, humor can be used to reference the “It’s Showtime!” experience. But let’s explore deeper to understand it.
The theme for “It’s Showtime!” is that the PWP often performs much better when they see their neurologist than they do at home. Let me give some examples to illustrate this dynamic. The care partner may share frustration with the neurologist that their partner “won’t pick up his feet and shuffles”. The neurologist asks the patient to walk down the hallway and it’s like night and day. The patient takes long strides, looks up, there is no shuffling! Another care partner mentioned that her husband speaks so softly that she can’t understand him, a source of tension between them. In the office visit, the PWP speaks clearly with good volume. A final example is a spouse, upset by profound apathy for her husband. But on the day of the appointment, the patient got up early, showered and picked out stylish clothes. In conversation with the doctor, this patient highlighted his enthusiasm for weekly Rock Steady Boxing classes. No sign of apathy that the caregiver hoped to address. Visits can leave the care partner feeling disbelieved, frustrated and angry. The patient is just trying their hardest. The physician may be in a quandary about how to best understand the problems that will guide interventions.
This is indeed a juggling act; how to balance out the needs of the PWP, the care partner and the neurologist with the goal of making a time squeezed appointment meaningful and thoughtful. I was curious to learn more about the “It’s Showtime!” experience and conducted an informal survey of care partners, PWP and neurologists. I will summarize some of the themes that emerged.
Care partners were in agreement, with the view that expressed “dishonest visits are a complete waste of time”. They felt “being truthful” in the visit is important, symptoms shouldn’t be “sugar coated”. Care partners were unhappy if they felt left out of the conversation. As one care partner summarized, “I have Parkinson’s too. It is a family disease.” One care partner wrote about how she’s become more “confident” and assertive over time about her role during the office visit. She stated, “I have learned to stick to my guns and report what I see no matter what.” Another care partner suggested the “usual” questions posed by the neurologist, don’t get to the heart of the challenges. The doctor should ask more meaningful questions such as, “What don’t you do now that you used to do as a family?” Or she suggested a probing question; “What are you afraid of individually and together?” These are less symptom focused questions and would move towards a model of care that has the PWP and care partners as co-collaborators with the neurologist, setting the plan of care together. Building on that idea, a husband shared his belief that sensitive, but honest discussions in front of his wife reduced feelings of paranoia for her about “conversations behind her back”.
From the perspective of the PWP, the office visit can feel like a tug and pull situation. One patient wrote about his “bravado” when seeing his neurologist every 6 months. He wants to “be able to have the drive and motivation to effectively fight the progression of PD.” For him, “Signs of progression may not be mentioned to anyone, including the doctor.” His wife was in a dilemma, wanting to share how difficult things at home were, yet wanting to preserve her husband’s dignity during the visit. Similarly, a daughter talked about wanting to let the doctor know how difficult dressing was for her father who may try to put his pants on over his pajamas or only shave one half of his face. But, she didn’t want to raise problems that would embarrass her father.
How did neurologists respond to my query on “It’s Showtime!”? That was interesting. One astute movement disorders doctor said “I educate my patients and care partners that this phenomenon often happens and acknowledge how frustrating it can be if they think I don’t get the whole problem.” Importantly she goes on to say, “What is the most important driver for management is how they are doing day to day, not what I see during a snapshot visit in my clinic.” Another neurologist with years of experience observed, “Patients’ exams fluctuate for many reasons including motivation.” Exams are interpreted in light of what the PWP and family tell us. One neurologist uses technology to help inform him about how things are going at home. If the PWP and family member agree, he’ll use videos (such as freezing of gait) that are brought into sessions to provide “more objective evidence of what is happening under normal circumstances”. Finally, a physician shared his creative approach; “I try to get the patient to understand that he or she probably can do better if they ‘show off’ for their family in public social settings”.
Adding together the time pressure of the office visit and the many issues that may need to be addressed for the PWP during the periodic office visit, here are a few takeaway suggestions:
Arrive on time. Lateness compromises the appointment.
Be prepared. Consider the most important issues and questions; make a list.
Be honest about the problems. It’s ok to share different perspectives.
Take notes if that helps you remember.
Ask if you can get a copy of the office visit note to remind you of what was discussed.
In summary, “It’s Showtime!” is a phrase that captures some of the complexities of the interactions during periodic visits to the neurologist. Since PD is a chronic illness, the relationship with the doctor probably will extend for many years. It is important to get the most out of every visit. Each person in the visit has an important perspective. It is not a bad thing for the PWP to “show off” and demonstrate to the neurologist how well he can perform when motivated. When things go well, the neurologist looks through the wide angle lens, appreciating the tremendous effort made by the patient. The physician also understands that any office encounter is a snapshot of the challenges in daily life. The best patient care reflects a collaborative effort, respectful of all perspectives. When communication goes well the PWP, family members and the neurologist look at symptoms but balance them with each person’s strengths, capacities and hopes to maintain the highest quality of life.
Lissa Kapust, LICSW presented at the Fourth World Parkinson Congress in Portland, Oregon and will be speaking at the 5th World Parkinson Congress in Kyoto, Japan. She helped launch the Care Partner Lounge at the WPC 2016, and will be coordinating the Care Partner Lounge once again for the WPC 2019. She is a clinical social worker at the PD Center of Excellence at Beth Israel Deaconess Medical Center and also coordinates “WellnessWorks”, a series of exercise and education programs.
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions of the World Parkinson Coalition®