Lisa Copen is founder and director of RestMinistries.com, a nonprofit dedicated to practical and spiritual encouragement of persons around the globe who are coping with chronic illness or pain. Lisa, who lives with rheumatoid arthritis and fibromyalgia, pursues this mission with the help of many dedicated volunteers. This article is reproduced with kind permission from RestMinistries.com.**
Q&A: How Do I Get Doctors to Listen and Stop Passing Me to Another Doctor?
Q: Have you had the experience of one doctor passing you off to another, and that one to another, and no one really wanting to ‘own’ you as a patient?
For a while I have felt I was the ball in a game of ping pong between my general practitioner and a specialist, each telling me to see the other. Currently, as new issues develop, I have become a “hot potato.”
My question is, what do you do to get doctors to listen and stop passing the buck? I am looking for suggestions beyond basics of talking to doctors. (One thing I am finding helpful lately is to pray earnestly and specifically for the appointment and the agenda to discuss with that doctor. I am at least finding each appointment a little less frustrating, and maybe a little more helpful.) - M
A: Lisa Copen - Hi, M. Yes, this can be very frustrating and I think most patients have felt this way at one time or another. My suggestions would be to try the following:
1. Call the local organizations for your illness and ask them if they have a list of recommended specialists. If they don’t, you may tell them:
“I know you cannot recommend anyone, but off the record, do you hear good things about a specific doctor whose name you could pass along to me? Do you know of anyone I could ask?”
Also, ask online friends in your area who have your same illness if they have some suggestions.
2. Ask others in the medical field who they would recommend, such as any surgeons you see, physical therapists, counselors, nutritionists, etc.
3. Consider if gender makes a difference to you. For over 10 years, both my specialist and general doctor were women. I would gladly see a male physician, and have, but overall, I need someone who will:
• Listen well,
• And not seem overwhelmed by side effects.
4. For a general practitioner, ask anyone you respect who has had any kind of medical condition if she or he would mind sharing the name of their physician. Since my diagnosis of rheumatoid arthritis, I’ve always had doctors of internal medicine as my general practitioners.
You may also want to ask around your church and see if there is anyone in the medical profession who may be able to give you the name of a recommended physician.
5. When you call for your first appointment, explain that you would like at least 30 minutes to explain your condition, and ask some questions about how the doctor prefers to work with patients who have a chronic condition, when a specialist is also involved.
There are doctors who love challenging patients and thrive on figuring out odd symptoms; other doctors do not, or do not have the time. Look for doctors who enjoy the challenge.
6. If the doctor you are interested in seeing has a web site, read as much as you can about him/her in advance. Also, Google his name and look on review sites such as Yelp (www.Yelp.com).
7. Ask your new doctor where they want to fall in the hierarchy of your medical team.
For instance, when I got a new rheumatologist last year, I asked him if he wanted me to come to him with symptoms that were obvious side effects of the medications (like basic infections, coughs, yeast infections, etc.), and he said yes.
8. Do your best as a patient to help the doctors communicate.
• When you have lab tests ordered by one doctor, have them fax results to other doctors.
• If you have an MRI or eye exam, etc. what other doctors on your medical team would find this information helpful?
9. Ask yourself if you want to try alternative treatments or may wish to in the future.
It’s best to not hide this from your specialist, so if it’s important to you, you need a doctor who will support your endeavors to treat yourself for certain things.
10. If you have either a general practitioner you like or a specialist, ask them for a referral to the other kind of doctor.
Whom do they like to work with? This can be very helpful if the doctors already have established a working relationship, and if you have a specific illness, doctors have a preference many times for other specialists who understand your disease.
For example, my rheumatologist likes to send me to an eye specialist who understands rheumatoid arthritis and how it affects the eyes.
11. Ask each doctor some specific questions and then go over the answers with the other one so there is clear communication. Such as:
• If I get a cold or sore throat, etc. which doctor should I see?
• If I have side effects that need treatment, should I go to the doctor who prescribed the medication or …?”
• If I have an emergency with ____, whom should I contact at 3 AM?
• If I have a _____ issue, would you prefer I go to the ER or Urgent Care?
• What information should I have with me when I go?
• Can the doctors there contact you?
12. When one doctor prescribes you medication, especially those which are pain killers, let the other doctor know so it never appears you are hoarding medications.
13. Be a “good patient.”
• There will be times when you must challenge a doctor’s opinion, but if you really like the doctor and wish to keep him or her, reasonably consider the doctor’s requests.
• If you frequently cancel appointments, arrive late, delay getting your lab tests done, etc. the doctor will be much less likely to help you or keep you as a patient.
14. Do your best to write down a list of things you wish to speak to the doctor about in order of priority.
Tell the doctor, “I have 4 questions today, so would it be okay, if I tell you what they are and then if we run out of time, you could call me back on the last one?”
15. Communicate your needs.
For example, if you often bring a caregiver, friend, or spouse with you, is the doctor comfortable with this?
16. Consider if this doctor is best for your needs now.
I have found that I needed a different rheumatologist for my thirties than I did in my twenties, and when I hit my forties it was also time to start looking around.
17. You mentioned prayer. Yes!
Finding, visiting, and keeping a doctor can all be very stressful. Ask friends to pray for you to be led to the right team of medical specialists to meet your needs.
Remember to send a thank you card to your doctors now and then or bring in a goodie unexpectedly. Before your appointment, pray for a sense of calmness, and yet also discernment and wisdom to know when to speak up.
* * * *
I have had a good medical team for some time now, but I’ve also had my share of doctors who have not particularly liked me.
At wound care, I had one doctor who casually said they would “just take a little piece of bone out of my ankle and. . . ”
At this point, I said, “With all due respect, I understand you are doing your job. But with rheumatoid arthritis that could disable my ankle for good. Dr. Y is my rheumatologist, and I won’t be having any procedures done until you run them past her, she approves them, and I have an opportunity to talk with her.”
He was not happy with me and did not like me questioning his authority. He especially didn’t like having to admit to me a few days later that he’d talk to my rhematologist and I would not be having the procedure.
On the flip side, I also left my son’s pediatrician and got a recommendation from a children’s therapist for another pediatrician.
In less than 30 minutes, the new pediatrician had us appointments at Children’s Hospital, a psychiatrist (who was ‘not accepting new patients’), and many more specialists who helped us solve a difficult case involving food therapy. We felt so relieved.
Last year my rheumatologist of 10-plus years was rather rude and I left the office in tears – a rare event.
I have found that many good doctors still have a “season” of being motivated to treat you. For me this seems to be 8 to 10 years. And despite a good relationship, I do expect to be treated with respect.
I found a new rheumatologist and am pleased with what he has been able to do for me, the medications he is willing to try, and his experience in using both Western medicine as well as herbs, etc. when possible.
* Lisa Copen is the founder of Rest Ministries, which serves people who live with chronic illness or pain through daily devotionals, articles, and much more. Lisa lives in San Diego with her husband and son. She is gradually learning how to balance motherhood, family, illness, and ministry, but she still knows it will be a lifetime lesson. You can see the books she has written, including, Why Can’t I Make People Understand? Discovering the Validation Those with Chronic Illness Seek and Why at the Rest Ministries shop.
* *This article is reproduced with kind permission of RestMinistries.com, ©Rest Ministries, Inc. 2012. All Rights Reserved.