I’m not an expert in dealing with doctors; however in 2017 I:
- Saw 13 different doctors
- Had 68 doctor’s appointments
- Had 22 days of radiation treatments
- Had 22 appointments for physical therapy
- Had 3 MRIs
- Had 12 days of various medical related treatments
- Spent 1 night in the hospital
As a result, I learned to make the most of the time I did have with my doctors. Today I feel better informed, better equipped to advocate for myself and better positioned to ask for the care I need.
The way I look at it is this: The doctor and I are partners; however, as the patient, I need to put more effort into the partnership to make it work. I am okay with this since I have the most to gain in the partnership.
I believe that too many people are intimidated by the doctor/patient relationship and consequently don’t advocate for themselves and don’t get the care they need. My hope is to help people become strong advocates for themselves so they can take advantage of all of the great care available to them on this journey of living well with Parkinson’s.
That’s why I’ve chosen to share the five ways I learned to maximize my time with my doctors. I hope these will be helpful to you, too.
#1 – Schedule Strategically
When you make your appointment, give as much information as possible to the scheduler so they know how much time to book for your appointment.
Experience says to make your appointment so you’re the first one on the schedule in the morning or the first after their lunch hour. Mondays are always busy so try to avoid those if you can. Also, schedule your appointments with as much advance notice as possible so you have the best chance of getting the times you want.
#2 – Be Prepared
The days of showing up at the doctor’s office and getting all the time we need to get our questions answered are ancient history. Therefore, it’s up to us to be as prepared as possible and to be clear on exactly what we need from our doctors.
Before you go…
- Review your notes from your last appointment, if you had one
- Make a list of any new symptoms, problems or concerns you have
- Write down a list of questions you want answers to before you leave their office
#3 – Give Advance Notice
Send an agenda to your doctor a couple of days before your appointment. This agenda will help to aid your memory during the appointment, and it’ll also help your doctor focus on what’s most important to you before he or she even walks in the room.
Some hospitals and doctors’ offices have portals that allow their patients to enter notes about why they’re coming. If available, use this tool before and after your appointment.
I also know some people who keep all of their medical records and notes in a three-ring binder and they take that with them to all of their appointments.
Here are a few items you might consider including in your advance notice:
- Why you’re coming to see the doctor
- Your primary objectives for this session
- New or worsening symptoms and when they began
- Questions only your doctor can answer
- List of all of your medications (You might want to consider taking your meds with you so that you have all the information you need on the bottles.)
- Lab reports or health records, if necessary
- Information you’ve received from other doctors or care partners that may be in conflict with what this doctor has told you (or at least a note that you want to talk about it)
- An overall assessment of how you’ve been doing since your last appointment
- A list of other health issues that might be relevant
As the doctor is also prepared for your appointment, let him or her go first. Many times your concerns will be addressed before you get to your list. It’s best to prioritize symptoms as well as questions for the doctor as it’s unlikely that every symptom can be addressed and every question answered in a visit. It would be prudent to start with your most pressing symptoms/questions. If not, you run the risk of overwhelming and confusing the issues if you try to address too much at once. The appointment can lose focus so try to gauge the doctor’s level of time and comfort.
While I’m sure your doctor wishes he or she could give you all the time you need, in reality, they almost always have another patient waiting. You don’t want to become known as a “sticky” patient. As one doctor told me, “with that patient, I’m deliberately in and out as quickly as possible.” However, be “sticky” when it counts.
The bottom line is that the more prepared you are for the appointment and the more outspoken you are in advocating for what you need, the better chance you’ll have of getting it.
#4 – Take a Care Partner
If at all possible, take someone with you. Ideally, it would be a loved one who has first-hand knowledge of how you’ve been doing and how you’ve been feeling, but that’s not necessary. Anyone who cares about you enough to join you would be fabulous.
After asking for and receiving the doctor’s permission, have that person audio record the session. This frees both of you up to really listen to the doctor without having to worry about writing everything down. And afterward, if there’s anything you’re unsure about, you can go back and listen to the recording for clarification. If you do not record, have your care partner take notes. They’re more likely to have a clear understanding of what the doctor said.
Here are some questions you may be compelled to ask depending on the information your doctor provides you:
- What are my treatment options?
- Why this medication? Why this dosage and frequency? What are the side effects? How long before it starts working?
- What’s next?
- What can I do?
- What’s the question I should be asking that I haven’t?
- Should I schedule a follow-up appointment? For when?
- Do you have any information about support groups or other resources that could help me in dealing with this issue?
- How will I get my lab results and how long does it take?
In the end, the most important thing is to not leave the office until you have the answers you need and the confidence to take the action necessary.
#5 – Debrief and Take Action
If you have time that day, debrief your appointment with the person who joined you and make sure you’re clear about the information you were given and the action steps the doctor prescribed.
If there’s any confusion or misunderstanding of what you and your care partner heard during the appointment, call the doctor’s office and let them know you would like clarification on that issue.
Finally, get into action. And stay in action every day.
Parkinson’s plays out a little bit different every day, but the lifestyle choices you make day in and day out can have a significant impact on your quality of life as a whole. And while your doctor can suggest ideas and behaviors for you to try, you have total control over whether or not you implement them.
It’s been my experience that taking rigorous care of myself each and every day is just as important as any visit I make to a doctor’s office. But, I still like to make the most of every 15-minute window I can get.
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