A Positive Health Care Story

KevinMD (Kevin Pho, M.D., featured blogger at MedPage Today, says the following on December 3:

Read any news story about our health system, and it will likely be negative.

Too expensive, too many errors, dissatisfied patients, doctors complaining.

We need more positive stories, says family physician Stewart Segal.

"When our medical system works right, it is truly a beautiful thing and it works right on a daily basis across the U.S.," he writes. "You just don’t hear about it.  The beauty of modern medicine is not noteworthy and will never be highlighted by the news media.  The art of medicine is lost to most, hidden in a closet by the press and powers that be.  It’s about time that it is removed from that closet placed in the daylight for others to enjoy.  It’s about time that patients who have been well served by the medical complex let their voices be heard."

There are plenty of successes that happen every day.  It can range from medical miracles, to a simple smile of thanks that patients give their providers in the exam room.  But in many cases, you'd never know from reading the news, or watching the television.

So, I would like to contribute my own positive health care story.  Some of you may know that my daughter was diagnosed with a relatively rare heart problem at seven weeks old (and she was born seven and a half weeks early, so before her original due date).  We were immediately swept into the unknown-to-us world of pediatric medicine and I must say that our experience has been pretty positive with only a few exceptions over the course of the last four years.  We were lucky enough to get referred to Lucile Packard Children's Hospital at Stanford early on in her diagnosis and we have worked with some of the most wonderful doctors and nurses in the nation because of that.

I don't have a lot to which to compare my experience, since we were have not spent time at any other children's hospitals.  But, I will say that being at a teaching hospital has truly spoiled me.  When I go to medical appointments with my mom at her hospital (a non-teaching hospital), I feel the lack of diversity of opinion (at LPCH, there is always a team working with your child - the team is mostly made up of medical residents or fellows and sometimes even medical students, but knowing that there are multiple opinions and multiple checks really makes me feel better) and the lack of patient engagement (one of the overarching foundations of care at LPCH is family-centered care - since my daughter is young, that meant them asking me questions about her and getting my opinions on what was going on - I always feel included in my daughter's diagnosis and care - sometimes to the point of exhaustion when I have repeated the same information five or six times to different medical personnel).  I know that it is impossible to foster this type of care at all medical facilities, but I can say that having access to a medical teaching facility is truly something that can change your perspective on the health care system.

The other thing I would say about my experience with the health care system has been an incredibly positive experience with our health insurance provider,  Blue Shield of CA.  I have heard horror stories from other families about fighting with their insurers, getting huge bills that have to be negotiated, having huge debts from transplant experiences.  We have had none of that.  We were refused an RSV shot at one point, but appealed and got it reinstated.  I had one bill that was mislabeled for my daughter's original ambulance transport that took a few phone calls back and forth to get handled.  I was sent one bill in the mail while it was being negotiated (and almost passed out when I saw how much it was for), but was never contacted beyond that.  Other than that, I have never had anyone question coverage for any item - and she has had more than her share of medical procedures, therapy, etc. over the last four years.  I don't know if this is typical for Blue Shield of CA or a reflection of our hospital billers being good at their jobs, but either way, it has been an incredibly positive experience.  The only bad thing is it makes me very, very scared to change or lose my job because I don't ever want to lose this health insurance!

My daughter is doing well.  We have had some bumps along the road to be sure.  But, over all, I always feel secure in the fact that she is getting the absolute best care at LPCH.  I also feel that I have been treated with respect and compassion throughout the experience, something that means a ton in a situation like this.  I wish that everyone could have such positive health care experiences and I guess that is one reason why I am so interested in health communication and patient advocacy.  There are places and people out there who are doing amazing things and I want individuals to be able to find those places and people and have successful health care and successful relationships with their health care providers.

So, there it is - my positive health care story!  I encourage others who have had positive stories to share theirs as well.  I think KevinMD is correct - the medical system is taking a bashing in the mainstream media, but we can rally online media and show that there are a lot of very positive stories out there and hopefully through that, figure out a way to turn around the negatives that do exist and are often highlighted.

Comment on: Hospitals Offer Wide Array Of Services To Keep Patients From Needing To Return - Kaiser Health News

As a follow up to my November 15 Comment on readmission rates, I thought I would also comment on this:  Hospitals Offer Wide Array Of Services To Keep Patients From Needing To Return - Kaiser Health News.

This article offered a few more specific instances of successful follow-up care offered to patients that seem successful in avoiding readmission.  Some of the things I talked about in the November 15 post were identified in this article:

Robert Wood Johnson University Hospital in New Brunswick, N.J., has nurses visit high-risk patients at their home within two days of leaving the hospital. 

This is such an important thing to have available, especially for elderly or less-mobile patients.  My mom is going through a really rough time right now and while I was at her chemo appointment with her last week the nurse advised her to talk to the nutritionist as a way of getting some ideas for keeping weight on during the chemo treatments and keeping her energy up.  My mom was extremely resistant solely because she HATES going to the hospital and has to go out there practically every week (and often two times during a week) just to get the necessities for her chemo treatments taken care of.  The last thing she wants to do is go again to see a nutritionist.  So, in the nurse's defense, she said, "how about a phone appointment?"  But, my mom also doesn't hear very well, so she hates doing things over the phone.  So, a follow up in her home or better yet, during her hour long chemo appointment when she is stuck just sitting there anyways seems like a reasonable accommodation.  But, it probably is not going to happen and she will miss out on that information.

I have also noticed the confusion with generic medication names being used versus the licensed medication names.  The docs and nurses often refer to the meds by the names the licensed names, while the names on the bottles are the generic names.  There usually is a reference, albeit often small, to the licensed name, but it often goes unnoticed.  For example, when my mom had her chemo appointment, the nurse told her that for nausea she could take not only her usual dose of her Zofran, but could take an additional dose of Compazine in between the Zofran dose times.  When we got back to my mom's I went through her myriad of medicine bottles to pull out the Zofran and Compazine and it took me a really long time because they were both generics and I didn't realize the names would be different.  I think a lot of times, my mom doesn't take the Compazine because she can't locate it easily and it isn't something she takes all the time.  With my daughter (heart transplant recipient), we always have to answer questions about what she is taking when we go into the clinic or get admitted to the hospital and I often have to ask them for dosages of drugs instead of the names because I don't recognize the names. Our labels are a bit better than my mom's as they will typically say "generic for ______" in the same size type as the generic name, but they are often so long and complicated that I would never recognize them.  This, I'm sure, can lead to some confusion in both administering drugs as well as reordering them.

I am not sure what the answer to all of the problems in our health system are, but I do think that the expense of individuals NOT doing their follow up appropriately will be worse than whatever the expense is of figuring out and implementing solutions to some of these problems.