BMC Med Educ. 2012 Apr 3;12(1):19. [Epub ahead of print]Do you think it’s a disease? A survey of medical students. Erueti C, Glasziou P, Del Mar C, Van Driel ML.
Almost 200 medical students at Bond University in Australia were polled as to whether chronic fatigue syndrome is a disease or not. (Disease: “an unhealthy state of body or mind: a disorder, illness or ailment with distinctive symptoms, caused eg by infection”)
Surprisingly 75% of them thought it was a disease. That was in contrast to a study which found that 21% of doctors thought ME/CFS was all in the patients head, 29% who weren’t sure and 50% who disagreed with that statement. Interestingly, the authors noted that 30 years ago there was controversy over whether depression was a disease. Maybe the next group of physicians and researchers will be a bit more enlightened than than the last.
What to Do when Doctors Make You Feel Like a Hot Potato
by Lisa J Copen*
April 11, 2012
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
• 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). [or RateMDs.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.
For sample pages of the report go to http://bit.ly/i9GSD6
A 400-page report, What do patients think of doctors ?, published in early-March 2011 by UK research organization PatientView, finds that over half (53%) of the 2,500 respondent patient groups think patients believe doctors are standing in the way of their receipt of the correct diagnosis, treatment and and/or support—and are making patients ‘fight the system’ to obtain the care they need.
The situation is at its worst in five countries—Canada, Germany, Italy, New Zealand and the UK—where 60% or more of patient groups say that health professionals need to improve their relationships with patients by not making patients fight the system for their medical needs. 70% of patient groups representing the interests of patients with gastrointestinal problems, 60% representing the interests of patients with multiple sclerosis, and 60% rare diseases, feel that health professionals need to stop forcing patients to ‘fight the system’ to get the care they need.
Poor doctor-patient relationships have a negative effect on patient health.
‘What do patients think of doctors?’ focuses on the current state of doctor-patient relationships, and offers numerous insights into how they can be improved. The report finds that less than a third of groups representing patients believe GPs and consultants remain traditional and patriarchal in their attitudes to patients. On the other hand, only 15% believe that doctors treat patients as equals (and act on that belief)—the rest believe that the situation varies from doctor to doctor, or that doctors may intend to take a partnering role, but fail to live up to it. Relationships between doctors and patients are undoubtedly in need of considerable improvement, especially in some of the less well-performing countries [see charts in sample pages at web-link above].
The state of doctor-patient relations has an important bearing on how well patients respond to treatment. In the report, patient groups are quoted as saying that poor doctor-patient relationships prevent patients from coming forward for medical treatment and care—even when treatment and care is needed.
Doctors need to listen more to the patient
When asked what single intervention would most improve doctor-patient relationships, the groups cite “enhancing the communication-and-understanding skills of the healthcare professional” as their main choice, second only to “the provision of treatment and care that improves quality of life”. In Australia, Italy, New Zealand and the UK, improving doctors’ communication-and-understanding skills is ranked first, as the most important way of improving doctor-patient relations. Groups representing the interests of patients with cancer and HIV/AIDS also see such a development as the favoured way of improving doctor-patient relations among the patients in their disease specialties.
About the survey
‘What do patients think of doctors?’ is based on the results of a November 2010 PatientView survey of 2,500 patient groups from around the world. The survey asked the respondent groups what they think of current doctor-patient relationships, and how they believe those relationships might be improved.
The report covers most subject areas in which patients would like doctor-patient relations to be improved, including:
The report analyses doctor-patient relations in 11 countries and one region of the world: Australia [number of completed responses = 60]; Canada ; Eastern Europe ; France ; Germany ; Italy ; the Netherlands ; New Zealand ; Spain ; Sweden ; the UK ; and the USA .
- Access and choice during diagnosis and treatment
- Patient information provided by health professionals
- Doctor-patient communication
- Gaining patient trust
- Respecting patients’ valuable time
- Accountability of health professionals
- Improving prevention practices
- Which single action do patients want from government and payers to improve doctor- patient relationships
- Which pharmaceutical companies are having a positive effect on doctor-patient relationship
- Why Pharma can have a negative impact on doctor-patient relationships
Doctor-patient relations are also analyzed for the following 12 specialties: cancer ; diabetes ; gastrointestinal ; heart and circulatory conditions ; HIV/AIDS ; mental health ; multiple sclerosis ; neurological ; Parkinson’s disease ; rare diseases ; respiratory ; and rheumatological conditions
Lydia E. Neilson, M.S.M., Founder and Chief Executive Officer
NATIONAL ME/FM ACTION NETWORK
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada