Communication Between Doctors, Patients and Family
Chat Highlights
July 16, 2003

Norma Devine, Editor

On Wednesday, July 16, 2003, Dr. Rick Wilson, a glaucoma specialist at Wills, and the glaucoma chat group discussed "Communication Between Doctors, Patients and Family."

Moderator:  Dr. Wilson, tonight we will be discussing communication between doctors, patients, and their families.

Dr. Rick Wilson:  Good.  

Moderator:  I guess most new glaucoma patients are frightened. Do you have a way to gauge a patient's fear and if help is needed to overcome it?  

Dr. Rick Wilson:  I am not sure I have a way, other than trying to be sensitive to the patient's emotional state.  Since glaucoma for most people is a lifetime disease, the doctor has to be honest or he or she will be found out.  Finding the balance between honesty and sensitivity is the key.

P:  I understand patients' fear.  I fainted a few times during laser surgery and I shake during appointments.  The patient gets scared if the doctor is candid.  Then the doctor reassures the patient.  It seems like an endless cycle for the patient.  If the news can always turn bad, how can the endless cycle of fear and relief from it be broken?  

Dr. Rick Wilson:  For most glaucoma patients, the doctor can be relatively reassuring.  Most of the damage caused by glaucoma occurs before the patient sees the doctor.  We have good medicines and good surgery.  It still is scary for the patient, but not anything like it was when I first started doing this in 1978.

P:  I wasn't there in 1978.  I'm here now, and the surgery was very hard for me.  The doctor focuses on the job at hand and well he must, but I feel as though I'm losing control of my life and my eyes.  

Dr. Rick Wilson:  I can understand, because our vision is really central to our lives, our independence, our interaction with others and how we get information about the world we have to deal with.

P:  One of my last appointments was so bad, I just cried and cried. It all caught up with me.

Moderator:  I know crying sometimes helps me.  Dr. Wilson, what is your thought on letting the tears fall?

Dr. Rick Wilson:  Crying is a great release and usually stimulates a comforting reflex in those around you.  Don't do it just after you put your drops in, though.

P:  Do you think better-informed patients who require treatment that may be uncomfortable or difficult are more or less compliant than patients who are poorly informed?  

Dr. Rick Wilson:  I try to have all my patients well aware of their circumstances -- the risks of the treatment plan, as well as the benefits and alternatives.  It is not only better for them, but also for me if they know the challenges we both are facing and the possibilities of how things will play out.  If an untoward event happens, then the patient is much more understanding.

P:  What about patients who don't want to hear anything?

Dr. Rick Wilson:  Sometimes patients do say they don't want to hear anything.  It just scares them, and they tell me to do what I think best. I have to honor their wishes.

P:  Something that struck me earlier this year, around the third anniversary of my diagnosis, was that glaucoma is a long-term relationship with the glaucoma specialist.  It definitely evolves over time.

Dr. Rick Wilson:  True.  That is one of the nice things about it -- that I get to know the patients and their families and what is going on with them, what is important to them, what we have in common.  If things aren't too busy, then a short chat is good for both of us.

P:  My glaucoma specialist said we'll be together for the next 50 years!

Dr. Rick Wilson:  I hope he's awfully young.

P:  Visits with my glaucoma specialist are rushed, with little time for more than a few quick questions.  With his waiting room full, and an additional workload as a professor and a researcher, that's not surprising.  I understand his time is valuable, but I leave frustrated.  Do you have any tips on how we can both gain maximum benefit from the visit?  By the way, the opportunity to ask questions and have them answered in this chat room has enabled me to keep my sanity.

Dr. Rick Wilson:  Thanks.  One way would be to come to the office with a list of questions each time.  If you hand the list over and let him run through the questions, you might get the most information with the least demand upon his time.  You could also suggest that he dictate a letter to you later, when he is less rushed.  

P:  I think a lot of patients are intimidated by doctors and are afraid that getting a second opinion might insult them.  My primary care doctor is very supportive, but I haven't discussed getting a second opinion with my eye doctor.  Do you have any suggestions about that?

Dr. Rick Wilson:  I think the softest approach is to say, "I have full confidence in you, doctor, but my wife (husband, daughter, etc., someone the doctor does not run into) is worried about me and would like me to get a second opinion.  To keep her happy, can you suggest another glaucoma specialist I can see for a second opinion?"

P:  That's a good way of putting it, Dr. Wilson.  You can tell you had a residency in psychiatry.

Dr. Rick Wilson:  Thanks.  It has come in handy.  If your doctor is secure, he or she should not mind your seeking a second opinion.  It is always best, from my point of view, to have the patient totally assured that the course chosen is the most rational one.  If the doctor gets too upset, it might be better to move on.

P:  I consulted a really good glaucoma specialist, but my regular doctor won't even answer the phone to approve the prescription the specialist ordered.  I gave him the information, the recommendation for a trial of the medication, the test results, the written plan.  I was properly obsequious.  But he won't talk to me.  It's really hard to find another doctor midstream.  I'm going to drive a hundred miles or so and have the prescription filled in Pennsylvania, and I am trying to  persuade the only other glaucoma specialist in town to take me on, baggage and all.

Dr. Rick Wilson:  It is obviously much harder when you are in a rural area and have very few eye MDs to choose from, let alone specialists.

P:  When your home physician won't cooperate with the plan, is dismissive, and astonishingly arrogant (read insecure), it is pretty tough to find a new guy! 

Dr. Rick Wilson:  You're right.  There is a whole spectrum in how sympathetic doctors are and whether they have been hardened on the outside by dealing with trying situations all the time.

P:  Do you ever suggest an entire family have genetic counseling?  If so, when do you suggest that and who counsels the family?

Dr. Rick Wilson:  I usually only suggest that with some kinds of children's glaucoma.  There is a geneticist at Jefferson University Hospital and a pediatric one at Children's hospital

P:  There are psychologists who are good at devising coping strategies and activating support from family, etc.  They think of things we patients wouldn't think of, things that make a big difference in coping with the uncertainty.

Dr. Rick Wilson:  I agree, and occasionally I suggest people avail themselves of that help if our support group and the chat room aren't enough.

Moderator:  Will insurance cover that kind of help?

Dr. Rick Wilson:  If the patient is sufficiently distraught and the insurance is decent, I think yes.

P:  Most insurance covers at least half the cost, but the mental health associations of every county have lists of places with sliding scales.  The last time I checked, the HMOs (health maintenance organizations) are required to cover 20 visits at 50% of the cost.  

P:  I want to know more, but my doctor just keeps telling me it's all right. (I have not noticed any severe vision change).  I think he is too reassuring.  He does not give me details -- simply that he can see changes.  What suggestions do you have so I can get more details? 

Dr. Rick Wilson:  Tell him you participate in this chat group, and you would like to see your visual fields.  Read the information we have on visual fields on the website.  That information will give you a tool to see for yourself how much damage you have and follow it along with the doctor.

P:  My doctor has an e-mail address, and I write to him in between visits when I want to ask something, or feel afraid of some symptom.  He responds when he can -- briefly, but he responds.  That gives me confidence and the security of feeling that he knows what's going on and if he happens to think it is serious, he will tell me so.  

P:  The baby boomers, who are reaching their 60's, are more computer-literate than their parents.  Do you think glaucoma specialists will be using e-mail more often with the baby-boomer generation?   

Dr. Rick Wilson:  Yes.  The problems at the moment are that e-mail is usually written at the end of a 10- to 14-hour day, is not reimbursed, and means more liability in both HIPAA (Health Insurance Portability and Accountability Act), medical aspects, keeping records, etc.

P:  Are there many women glaucoma specialists?  Some women seem to prefer women doctors and seem to relate better to them.  

Dr. Rick Wilson:  About 1 in 8 is a woman, as I remember, but that ratio may be changing.  All three of our fellows (fellowettes?) this year are female.

P:  Would you say that communication between you and your adult patients' families about the patients' medical conditions is worthwhile? Do you discuss your adult patients with their family members?

Dr. Rick Wilson:  If they come with the patient, or if I feel that I may not be getting the best answers from the patient.  I may just call the family doctor or internist.

P:  Do you think that there's often a trade-off in any medical discipline -- not just glaucoma -- between a doctor's activities and aspirations to do research and his clinical responsibilities?  That's been my perception in my own case.  Do you need to make a conscious effort to not let the former intrude on the latter?

Dr. Rick Wilson:  Usually it's the opposite -- trying to find time to do research with the crush of patient care and its demands.  You think you have a day in the lab or at the computer and an emergency comes in.

P:  What kind of training do glaucoma specialists receive in learning to relate to the patient, not just to the glaucoma?

Dr. Rick Wilson:  Unfortunately, that  depends entirely upon who is doing the training and how they relate to patients. I think one of the strongest aspects of the Glaucoma fellowships is that our fellows get to see eight specialists and how they interact with their patients.

P:  In the last three months since my diagnosis, this chat room has been a source of security. I have learned to open up with my doctor and to talk to him like he is a person.  He now talks to me the same way.  I was on the verge of a breakdown when I found this chat room. I have to say thanks to everyone and to you.

Dr. Rick Wilson:  Hearing that it helps makes the time I invest worthwhile.  Good night, everyone.

Moderator:  Good night, and thanks again.

End of highlights for July 16, 2003.

On July 23, Dr. Wilson discussed "ICE Syndrome" in the Chat room. Click here for highlights of that meeting.

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