Friday, November 22, 2013

Patient centered care

Okay, its a break from the holiday sewing tutorial collections.  1. Because I've been dealing with Aria's healthcare and I haven't had time to put together an awesome collection and 2. Because I've been dealing with Aria's healthcare and something has been bugging me about our most recent experiences.

I know I've talked about being in a doctoral program; I think I may have mentioned the particular focus of study.  I am mostly interested in mental health care policy but my course of study has provided me with a solid background in general health care policy with an emphasis on health care systems, quality improvement, and public health.  With all the recent hubbub over healthcare transformation, there's quite a lot of stuff going on.  One of those things is a push to make care more patient and family centered.  Its a lovely buzz word but what does it mean?  It means that patients and families are actively involved in the care that they or their loved ones receive.  There is an emphasis on patient/physician relationships built upon communication and trust.  Doctors no longer assume they know what and how a patient feels and they no longer assume they know best. Instead, they should actively seek patient and family input, encourage questions and feedback about health concerns and care plans, and operate under a team-based model of care where everyone including the patient and family is considered a valuable member of the care team.

Okay.  Sounds great.  Some places and some individual doctors were already doing this or are in the process of making that fundamental shift from doctor led to team led care and unfortunately some are dragging their feet and will need a little more time and a whole lot more nudging to get them to move in that direction.  Change is hard.  It really is and implementing patient and family centered care requires a huge shift in the way the medical profession has traditionally thought about healthcare and the role for patients and families in healthcare. (Psst: this is going to be long, so pull up a chair and put your feet up. ;)  If you want to scroll down, you'll find some tips from me on how patients/parents/caregivers can be more active members of the healthcare team.)

Okay so what has been troubling me?  Well, here is the deal for the last 7-8 months Aria has been complaining of tummy aches. Initially I thought it was solely anxiety related; I thought that if I could help her learn to manage her emotions, it'd get better.  It might be anxiety related but it's also very physical.  After a few random episodes of vomiting in the absence of any other symptoms of illness, we took Aria to the doctor.  An X-ray showed she was extremely constipated.  I'd like to note that this was something that took us by surprise as Aria's stools have never been hard and actually have always been on the loose side.  We gave her Miralax by doctor request for one month to help remove the blockage. She seemed to get better. At her follow up appointment about 2 months ago, they told us that she was fine, to maybe give the rest of the medicine we had left every other day until it was gone.

I have to say I was incredibly frustrated with that appointment.  For one, their long term plan seemed to consist of little more than, "just give her more laxatives if she has problems again." Medicine has it's place but I'm not a fan of relying on them as band-aids.  How were we supposed to know how long to put her on the laxatives, when to take her off, or when to finally bring her in for further evaluation?  Is 2 months too long? What about a year?  

In addition, the attitudes of the supervising physicians for the two appointments were completely different.  That first appointment was with an older no-nonsense chap who was extremely understanding, who listened to my concerns, and took the time to fully grasp our particular situation.  The one we met during the follow up appointment was condescending, was clearly not listening to me, and appeared to have a lot of preconceived notions about parents with children on Medicaid.  I'm still internally stewing over the comment she made when I expressed concern that there are times when Aria doesn't seem to eat much. Instead of offering me advice or pointing me to resources to help us deal with Aria's lack of appetite or picky eating, I was told, "Well, that is clearly because of something you've said to her."  So rather than advocate for Aria, I let the way she talked to me beat me down. Instead of questioning and pushing for an actual long term plan, I walked out feeling confused and embarrassed. 

The last month Aria mostly seemed okay but near the end of October she complained of tummy pain again. I remember that vividly because rather than run around in a pumpkin patch field with her buddy, my energetic and beautiful child sat in a van on the verge of tears because she was in so much pain. And then she started having poop accidents in the morning. She says she can't feel it when she has to go.  Last Tuesday on the way to drop me off at work, she vomited in the truck.  With no fever and no other signs of illness; to me that's a red flag in light of her history of tummy problems.  

So I called and made an appointment. The lady on the phone agreed that I should bring her in. It was an urgent care visit which means the physician who saw Aria was some random physician and not her actual pediatrician.  She started off with the usual string of questions about what brought us in.  When I told her, she seemed a bit confused and repeated several times whether I brought Aria in just because of ONE vomiting episode.   Maybe I'm still sensitive after my last encounter with Aria's clinic, but I was over it.  I was done playing games, so I told her yes because I think it matters and because we are not happy with the level of care, that we're not happy with the attitude of just give our child laxatives to fix the problem, that I didn't appreciate being told that this wouldn't be a problem if I just fed our daughter right because I do a pretty darn good job on that front.  Aria eats lots of veggies and fruits yes we eat fast food and pizza occasionally but I don't buy a bunch of processed foods on a regular basis and her drink of choice is water.

The physician told me that in cases of severe constipation, the intestines get stretched out and that sometimes the person needs to be on laxatives for an extended amount of time to give the intestines a break and time to shrink.  I've done my research and she's right; prescribing laxatives for up to a year for severe constipation seems to be standard medical protocol when they suspect the intestines have been stretched out.   I don't have a problem with that; I have a problem with the lack of support.  So I told her that I understood that, that I'd done my research as well, but that we wanted an actual plan in place and we wanted a timeline for how long she needed to be on the medicine. 

She left and brought in her supervising physician (one we haven't talked to about the tummy troubles yet) who came in with a care plan, an actual care plan.  They do believe that Aria's intestines are stretched out, which means even when we get her bowel movements going, some of the stool fills in and settles into the stretched out portions and slowly collects, eventually starting the cycle over again. So she wants Aria on the laxative again but this time for 6 months.  If she vomits or complains of tummy aches I'm to call them.  I was good and didn't raise my eyebrow at that considering the fact that I just had to defend my rationale for bringing my child in for ONE simple episode of vomiting.  The supervising physician also told me that sometimes some people just get the short end of the stick when it comes to tummy issues no matter how well they eat, which I appreciated given my past experience at their clinic.

In addition we have a psychiatric evaluation in place early December. The first supervising physician (the one I liked) recommended it to assess if her sensory problems and general anxiety are contributors. I'm not even going to get into our journey with the mental health system right now...maybe another day. So, this is where we are at.  No. Constipation is not the end of the world and I am thankful that Aria doesn't have anything seriously wrong with her, but its still not insignificant either.  I don't want her to grow into an adult who has such severe gastrointestinal problems that it prevents her from fully enjoying life and I most definitely don't want her to have to rely on laxatives her entire life to be comfortable.  

Aria was in good spirits at her appointment.  Clearly.
I appreciate the challenge the medical field faces.  I understand they often deal with patients who consume too much healthcare, who demand treatment for health concerns that would clear up without medical interference or with lifestyle changes.  But I also know that patients and caregivers have a lot of knowledge about their or their charges' health status and that they are often the strongest member of the healthcare team if the medical establishment includes and supports them properly.    

I have to wonder how many people fall through the cracks because of inadequate support and the sometimes condescending attitude of medical professionals.  I'm both sad and relieved.  Sad because I suspect the answer is too many and relieved because I'm in the position to push back against such crap.

I'm going to end with a few final thoughts on how to be a more active member of your own or your child's healthcare. I'm sure many of you know this and by no means am I suggesting that you don't do a good enough job, but I know that I personally struggle sometimes with it and maybe a few of my suggestions will be useful to someone out there at some point in their lifetime.

  1. The minute you start to consider calling the doctor, start keeping a log of relevant information.  What do I mean?  Okay, so I'm not in tune with Aria's bowel movements.  I'm just not.  I would notice if she hadn't pooped in a week, but I don't particularly keep close track of each and every time she goes potty. Our appointments would have been much smoother had I actually had the foresight to keep a log on what she was eating, how often she was urinating and pooping, how frequently she complained of tummy aches, and so on.  Of course it can be hard to know exactly what information to track so don't get worked up if you don't know what to track or don't track the things the doctors want to know about, but if something seems particularly relevant, track it.
  2. Related but different, keep your own personal record of any and all formal and informal treatment for the issue in question.  Yes, your doctor should have access to your medical record but sometimes information doesn't get put into the system or it gets put in the wrong place.
  3. Before the appointment, write down all your questions and concerns and be sure to bring your list to the appointment.  You tend to get bombarded with questions and information and its really easy to forget the things you wanted to address especially if your physician is trying to beat the clock and get to his/her next patient.
  4. Consider bringing someone you trust along for the appointment.  It can be hard to pay attention and stay focused during an appointment when so much is going on.  It helps if you have someone with you who can listen intently, take notes, and even ask the questions you want to ask but are too embarrassed to do so yourself.
  5. Ask them to clarify themselves.  If something doesn't make sense, it doesn't make sense. I find it useful to either straight up ask them to explain what they mean or to repeat back what I think they said and ask them if I got it right.
  6. If you're uncomfortable with something, speak up.  This one can be incredibly hard.  A lot of us have grown up believing that doctors really do know best.  Don't get me wrong.  They have an enormous amount of academic and medical knowledge that should not be discounted.  But YOU have spent a lifetime in your body or YOU have spent a lot of time with your child, which means you have an enormous amount of intuitive and innate knowledge that should also not be discounted.  At Aria's followup appointment, I ought to have pushed them to discuss an actual care plan.  I was unsettled by the lack of guidance and long-term thinking but I was so embarrassed by how the physician treated me that I left without voicing my concerns.  If I could have a do-over, I would have insisted that they help us develop an actual care plan that consisted of more than "just give her more laxatives!"

Finally I have to say that if your physician is being condescending and disrespectful on a routine basis, you need to know that there is absolutely no excuse for that kind of treatment.  I'd like to say just get a new doctor but I know that sometimes that isn't practical or possible.  In our case, Aria is seen by a resident physician first and then whomever is the supervising physician on duty that day provides support and oversight if Aria's case is complex.  I think switching clinics at this juncture would be a mistake as she has gone there since birth and this is the first time we've had an issue.  But that does mean I'm going to be on guard from here on out and I won't be allowing any other physician at that clinic to ever speak to me so rudely.

Look, bottom line is that it's totally okay to speak up if you feel disrespected.  And it's totally okay to request certain doctors in a practice if you find that one is more helpful or respectful than another.  If you're up for it, I suggest letting someone in charge know if you find a particular physician disrespectful or extraordinarily helpful.  As the system moves towards more patient centered care, patient and family voices are going to be extremely important for shaping and guiding further transformation.  



1 comment:

  1. I am SO happy to have found this and read it today. I have two daughters: a two- and three- year old, and I have a two-week old son. Since having my son, I have found our pediatricians office to be extremely offensive and pushy...making me feel like I'm doing everything wrong as a mom. Since my son was born in a hospital that was out of network for our pediatricians, they wanted us to come in to get a weight check less than 9 hours after being discharged: they said it was their policy. Unfortunately, we were discharged at 11:30PM, and certainly lacked the energy to get into the office so early the next morning with three children (besides this, my son had not dropped any weight while in the hospital, and the pediatrician who was caring for him there said he did not need to be seen until two days later). When my husband called to cancel the appointment, his call was met with an animosity and anger for not following "policy." We took him in for his initial check-in on the scheduled day, and were told that he would still need to return for another weight check the next week. To be fair, he did drop a few ounces by this point, but that is to be expected in the first week. So we returned a week later to get his weight checked again. He gained back some weight, but "not enough" according to them. I was asked many questions about my breastfeeding habits and told to wake him every 2 hours to feed him, and to return again in two days. I was also told that it might be better to think about supplementing with formula. The next day I called and cancelled our return visit (this time of year is a terrible time to be frequenting a pediatrician's office - especially one that only has a half wall separating the "sick" and "well" areas - ESPECIALLY with a newborn). My husband and I have been weighing him religiously twice a day. He got back to birth weight at exactly two weeks (yesterday), and today, he surpassed it! I wish that instead of making parents feel like everything is their fault, doctors would have a little bit of compassion and empathy...and maybe even be supportive. Your tips are fantastic, and I plan to print your post to read as a reminder before I take my kids for any new appointments in the future. Thank you for sharing your story. Best of luck to you and your daughter. I hope she is feeling better, and I hope that you get better care in the future.