Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Oprah and Questions About Health

I turned to my digital video recorder to start watching the week of Oprah’s shows on wellness.  I was listening very carefully to her description about the symptoms she was having and the steps she took to find the cause of her problems.  If you didn’t see the show, she complained of feeling tired, gaining weight, heart palpitations and other symptoms.  She went to four doctors and they felt she had a heart problem.  She was on blood pressure medication and heart medication but it wasn’t taking care of the problem.  Where did she get her best counsel?  The viewers who watch her show!

The viewers sent e-mails saying that Oprah should have her thyroid checked.  When she went to the fourth doctor and asked abouther thyroid he said that would have been tested along the way.  She asked when it would have been checked and when the doctor went through all the records there was no indication that her thyroid had ever been tested.  Four doctors and no one thought about her thyroid…why?

The truth is that overwhelmingly (not all) doctors make their diagnosis within the first 20-30 seconds of your visit.  If that’s true how do we ever get a correct diagnosis?  How can you make sure that the doctor has the information they need to make the correct diagnosis?  Make the doctor slow down!  You might be wondering how that would even be possible, but let me tell you…you’re in the driver’s seat.  You can set the pace for the visit if you want to, want to know how?

The easiest way to set the pace is to regulate your own breathing.  There is a tendency for every system in our bodies to speed up in the doctor’s office that’s why so many people have “white coat syndrome”.  Once you slow your own breathing the atmosphere in the exam room changes.  Next is to stop the doctor and ask the doctor to allow you to tell the whole story.  A partial story can yield the wrong diagnosis.  I know this isn’t the time to share Buddhist philosophy with your physician, but a bit of beginner’s mind wouldn’t be a bad thing.

If asking your doctor to allow you to tell your whole story doesn’t work, asking questions will alter the pace of the visit.  When the doctor gives you their findings you might ask, “what else could it be”?  This gets the doctor to think of other possibilities.  You might also ask the doctor what other organs are it the vacinity of the problem they’re suggesting, just as a possibility.  It’s your appointment, your time to get the care you need; don’t get sidetracked by the eight minute appointment the insurer allows.

If Oprah went to four doctors, at the best medical institutions in the country with leaders in the field because she can pay out-of-pocket if necessary, what hope do the rest of us have of getting the right diagnosis?  It’s up to us to become our own advocates or at least find someone who can guide us through that process.  You have the right to a correct diagnosis.  You have a right to a doctor’s full attention.  You have a right to being seen and heard as an individuals not a set of symptoms.  H

How will you set the pace at your next appointment?

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Doctors Should Give Patients More Credit

This weekend I attended a conference on COPD (Chronic Obstructive Pulmonary Disease).  I was grateful to the coordinators for putting on such a diverse and professional program for those facing this great health challenge.  I went because most of my background is in infectious disease, oncology and Alzheimer’s.  My mother-in-law was diagnosed with COPD almost two years ago so getting the most up-to-date information is crucial.

The end of the day gave us, the participants, to select on of three breakout sessions.  I attended the session on sleep apnea.  The physician giving the talk was terrific.  He gave great examples, was patient with the audience members, was clear and didn’t try to impress us with big words we may not care about.  I felt that he truly was delivering information we needed to hear.  Dr. Teofilo Lee-Chiong from National Jewish Health was trying to give us the information we needed to be able to converse as a more informed patient.

As I said the doctor was answering questions throughout the presentation and then a few questions in a row really stunned me.  Audience members began asking the doctor questions based on information they were given by their own physicians.  Dr. Lee-Chiong would say things like, “that’s not true”, “you can’t determine that information from the screening your describing”.  I was predicting a huge number of calls to doctor’s offices on Monday morning asking their doctors about the information they acquired.  So I ask you this, who’s right?

I believe in going to the expert.  I feel more confident getting information from someone who is in the trenches every day, conducting research, concentrating on a particular issue (in this case sleep apnea) and someone who has interaction with a high number of patients requiring that expertise.  Unfortunately, unless we’re in need of a specialist, most of us see doctors that aren’t fully equipped to handle the complexities of issues like sleep apnea.  Before Internists were Internists (requiring a residency and passing Internal Medicine Boards) they were often classified as General Practitioners (GPs).  I personally want the expert.  I don’t want the doctors to guess.  I want the information that is current.  Why were so many audience members given wrong information?  Was Dr. Lee-Chiong wrong?  How are we supposed to figure it all out?

Interview your doctors.  Don’t just pick their name from a book.  Get recommendations!  See what specialized training they have.  If you’re going to a teaching hospital ask the doctor if they’ve done research and could you see a copy of the study.  Things change so rapidly and so frequently that keeping on top of information is overwhelming.  That being said, doctors should give us the courtesy and respect to either pass along to someone who has the correct answers or at least say they will consult with someone before giving explanations for things that aren’t correct.  It diminishes our trust and faith in the doctors ability and skill.  I don’t know about you, but when I’m in need of medical care I want someone I trust that they know what they’re talking about.

What do you do when you get conflicting medical information?  How have you handled the opposing views?  What have you done to get doctors to speak to you as someone with a brain?

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness, Personal Conviction

Medical Training: What Are the Patient’s Rights

It’s interesting when things I’m reading and watching on TV come together and make me begin to question what’s going on for patients in the hospital.  I’m reading Christine Montross’ book “Body of Work”.  It’s her story of going to medical school and her experience in the anatomy lab.  This book is not good reading for those with a queazy stomach.  The TV show I’ve got on my DVR is “Hopkins” following med students, interns, residents and attending physicans at Johns Hopkins University Hospital.

I have lots of friends who are doctor’s and nurse practitioners.  Overwhelmingly I’ve been told don’t go to the hospital if not an emergency in July because the new medical graduates are prowling the floors looking for procedures to add to their repertoire (just watch Grey’s Anatomy/ER or any other medical drama).  This is particularly true in teaching hospitals, but you should be aware that the doctor examining you, now, the 2nd of September may only be out of school for two months.

I understand that new doctors need to learn, but isn’t it important that patients understand their rights when it comes to who performs procedures.  “Hopkins” showed a new resident removing fluid from an older woman’s lung and in the procedure punctures her lung requiring surgery.  She then requires that a “real doctor” (which the resident is) perform any further procedures.

Dealing with hospitals is traumatic enough without having to question the experience of the person performing a procedures.  As your own health advocate it’s perfectly fine to ask about the doctor’s credentials. How many times have they performed the procedure, what are the risks and if the person is new to the procedure who will be there to oversee the procedure should there be a problem.

I’ve had physicians who were just out of residency, but not just out of medical school.  Every profession has a training ground, but we’re usually informed and have to give consent not only to the treatment, but to understanding that the person is in training.  When I was doing my psychotherapy internship while in graduate school, all the clients were informed that we were graduate students and not only did we have minimal training, but the sessions would be reviewed by our practicum supervisor.  True, we weren’t in a life or death situation, but the standards should be equivalent, don’t you think?

Have you had any experiences that where you’ve had to advocate for yourself to get the care you want?  Share your experience and let others learn from your courage and self-advocacy.

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Hospital Transparency

Recently I spoke about my brother’s surgery.  The hospital he was in was very nice, a private hospital.  My sister-in-law had done all the legwork; checking out the doctor with the state board, researching the hospital, etc.  It’s interesting because I wasn’t worried about the hospital’s mortality rate, I was interested in the hospital’s infection rate.

Lo and behold, yesterday on NPR’s “Talk of the Nation” the topic was comparing hospitals so you can make better choices.  The most important thing to consider is that during an emergency it’s about getting the fastest care, not researching to find which hospital ranks higher, the truth is if you do the research you’ll probably be dead before you get the care.

Dr. Donald Berwick, CEO, Institute for Healthcare Improvement and Dr. Robert M. Wachter, Chief of Medicine at UCSF Hospital discussed the tools available to the public when choosing hopsitals.  They shared that Medicare has tracked mortality rates as related to heart failure, heart attacks and pneumonia.  The information gathered looked at mortality rates for 30 days from the intial hospital stay.

The goals is for hospitals to become more tranparent.  Knowing the ranking is not only a tool when you need to be hospitalized.  It’s a tool that will help hospitals improve their levels of care, decrease mortality rates and in time we’ll learn more about their infection rates.

We have to remember that we’re healthcare consumers, not guinea pigs.  We have certain rights as patients and one of the rights is to choose a hospital where our chances of survival are increased.  Remember, not all doctors have privleges at all hospitals.  You may have to choose between a doctor and a hospital, or before making the appointment, if you know the hospital you want to use, ask the doctor if they have privleges.  This makes it easy on you from the start and you won’t have to come to the fork in the road and make those difficult decisions.

If you want to see where you hospital ranks go to  Part of the process of evaluation is to figure out how to improve healthcare.  It asks the hospital to look at their level of reliability- do they do the right thing everytime?; teamwork amongst the hospital staff; and listening to the patient’s voice.  Let’s face it, the hospital would go bankrupt if it didn’t have patients.  In essence, we are the hospital’s employer; they should listen to us.

Hospital stays are stressful enough without having to worry about making it out alive.  Knowing which hospitals have better track records empowers you to make good choices about your health.  It provides you with reinforcement about being a partner in your own healthcare…isn’t that what you want?