Power to the Patients – NOT!

Today I found myself extremely pissed at my health care team.  I had my weekly infusion of eculizumab, the drug that is intended to prevent the HUS from recurring.  For the past four sessions, the renal transplant coordinator has told me what time to be at the infusion center for the infusions.  Yesterday when I called to find out what time I was supposed to be there, I was told that making the appointments was my responsibility and since I hadn’t made an appointment, they were not available until 1 pm, which meant I had to sit in the hospital from 7:30 am when I needed to go in to get my blood drawn, until 2 pm when my infusion was finished.  Not that I have much of a life right now, but I can think of a million things I would rather be doing that sitting in an uncomfortable chair in the waiting room of a hospital clinic for six hours.

I called the infusion center and begged them to squeeze me in early.  Now please understand I have worked in this University system for the past 20 years.  I understand how it works, and I know in my clinic we squeeze people in all the time.  They refused to do it.  I told them I would sit in the waiting room and wait in case they had a no-show.  Which I did.  I sat there all morning hoping they would call me back.  They saw me, they came out and called other people and refused to call me.  They could have done so.  It would have been the compassionate thing to do, but would have meant they would have had to work harder, and they were not about to do that.

They called me back at 1 pm on the dot, not a minute earlier.  It also meant I got stuck four times today.  Once for the labs, they missed the first i.v. (in my hand – owwww!) so they had to stick me again, and then gave me an injection of a medicine to stimulate my bone marrow since my red count is still low.  I was grumpy grumpy grumpy.

The health care system cannot help but undermine individual autonomy.  We become cogs in the machine.  One of the catch phrases in medical ethics today is shared decision-making – i.e. the patient has the power to direct his/her care after meaningful and robust discussions of the available options with the treating physician. But the reality is that it almost never happens that way.  The information inequity between the patient and the provider is just too great.  Even if there are some very good physicians who try their best to treat patients as individuals, and there are, the system as a whole is designed to treat us like widgets.  In some respects that is good.  In the old days they called it “cook book medicine” but these days we call it evidence-based medicine and, for the most part, people should be treated based on what the best evidence in the literature shows works, not the history and individual experience of the physician.  But it still doesn’t feel very good and unfortunately life as a patient, especially in the hospital, means you suffer millions of little humiliations each day.

So, from here on out, I am resolved to take charge of at least my schedule.  Not rely on the coordinators, make my own appointments, keep even more on top of my plan, and as much as possible try to maintain some modicum of control and dignity.  It is the responsibility of every one of us to do the same.  We are fighting decades of a culture of paternalism and the doctor knows best and while it is uncomfortable often for physicians to have patients who are demanding and empowered (remember Elaine in Seinfeld?) it is important.

Creatinine was 1.29 today.  I am free until Monday!

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6 thoughts on “Power to the Patients – NOT!

  1. Lisa.
    First I’ve been following your journey from here in India. I am glad to know the details and glad that on the whole you and Sarah have come through all the trials very well.

    Now, I must address your slogan “Power to the Patient!” You’ve touched a very raw nerve. I recognize that I am taking a broader target here but I would love for you to pass this on to EVERYONE you know in the whole medical establishment, complete with my name and phone number.

    Two things I urge:
    1) Most Important: REFORM THE EDUCATION AND ADMINISTRATION OF THE MEDICAL ESTABLISHMENT. This is the key problem. The whole issue is that none of the people with the knowledge, skill, and authority want any of the responsibility. I include the president of the University Hospital system in this, down to the last Nursing Aide, whatever their current politically correct title may be. They do not do their basic job well enough to earn the status of dictating to the patient when to pee, to eat, to breathe with or without oxygen, ad infinitum. The whole structure is self-focused and self-sustaining. The PATIENT is nothing more than the fuel for this enterprise. I despair for Obama because he has no idea of the hydra-headed beast he hopes to tackle in the simple matter of basic costs.

    2) IF THE PATIENT COULD HAVE THE POWER, SHE/HE WOULD NEVER FALL ILL. Karen mentioned once to me that I should really broadcast my hospital experiences because I could articulate the problems that many patients might not be able to. Well, you have done a great job. But the point is: To expect the Patient to take Power when he/she is in the grip of illness is the fundamental problem with the whole system: medical business and all other businesses. Every company is in the business of pushing the decision (read RESPONSIBILITY) on the to client/customer/patient.

    Will you, Lisa, from your unique perspective as a patient skilled in medicine explain to the people involved that when a person is ill (sick, invalid, incapacitated due to a medical problem), that person CANNOT (Please re-read the description of a patient) and should NOT have to take major responsibilities.
    THAT IS THE JOB OF THE PROFESSIONALS IN THE MEDICAL FIELD. THAT’S WHAT THEY ARE ALL PAID THE RESPECT AND DOLLARS FOR.
    If my daughter has to watch for what medicines the Nursing Staff is giving me, and I (THE PATIENT) have to watch and ask about why people are randomly taking different tests that means that neither the brilliant physicians nor the qualified residents, nor the “attending ,” not the In-charge Nurse, or the nurse’s aide or the wheel-chair attendant: NOT ONE OF THEM IS DOING THEIR JOBS.

    These are the critical realities. In the face of those, remember how you felt when a simple request to adjust schedule led nowhere? Please expand your righteous indignation to these items as well.

    Thank you for letting me vent (p.s. I did write about my issues to the President of UCH and few random improvements did happen. What of those who tend not to speak up?)

  2. Lisa, I also have been reading with utmost interest how your visits have been since the surgery. But what a wonderful and unexpected pearl of a surprise with yours and Meena’s commentaries. Hear, hear!

    As an addendum, I’ll cite a small example of my most recent experience with my mom, who was admitted after congestive heart failure. They put her in a room with a woman who selectively chose not to speak and hear any English, and this was given to my mother as the hospital’s excuse for basic inaction regarding this woman. (And for the record, my mom herself is a naturalized citizen who went through the paces to become an American citizen more than 65 years ago).

    Anyway, to add insult to injury, this woman had a dozen (truly — 12) guests in her room of all ages all at one time, carrying on and using her bathroom, even though there was one down the hall for visitors. No one said anything about limiting the number of visitors in the room, nor the commotion, nor reminding them the bathroom was for the patients — even though they were asked by my mother directly, and my mom also requested the nurses to control the matter. When my mom vocalized to the nurses, and then nothing was changed to help the situation, my mom requested again, and again. She became viewed as “too demanding.” And granted, my mom can be unrelenting at times. But on some of these fronts, she was right.

    On top of that, one of the younger visitors got belligerent and said their mother was sick, too, and had the right, and so on. If there was really a language barrier, perhaps the hospital staff should have gone directly to this English-speaking person to translate the need for their mother to extend some common courtesies in this situation.

    However, when the expansive company departed, this woman continued blasting the TV all day and night. No one told her to turn it down, nor reasoned with her that it was preventing others from resting. When we asked about headphones to give her, we were told they no longer have them (or never had them) for the TVs. All they could do to correct this was offer MY mother ear plugs!

    My mom has tinnitus, which made this noisy atmosphere sound several times worse, and then because of this she could not hear what the doctors were saying when they came in to see her. In addition, she’d also have to ask the doctors to repeat themselves because they either spoke too fast or they also had an accent that was difficult for her to tune into, too. She wasn’t trying to be offensive about that either, but they didn’t seem to either understand her nor care about this condition.

    Old people usually can’t hear as well as regular folks, so you’d think they would be accustomed to slowing down and making sure that they were understood before moving on. Or, even take matters in hand by shutting down the TV set. Instead, they seemed to be ignorant of the obvious.

    Ironically, I just saw an episode of Grey’s Anatomy last night, in comparison, where Dr. Karev tells his young patient to turn her music down and wear her ear buds so as not to disturb others. Makes sense. But in a real hospital, you can’t do that?

    We all have suffered minor inconveniences when in a hospital facility. Some of these things are understood, not enough private rooms, for one. But common sense would dictate that there be some measures taken for the well-being of both parties when there is a joint room, including noise abatement and the necessity for the patient to hear and understand what the doctor is saying during their rounds.

    I’d appreciate it if you’d add “room rules” to the list when you send this other information up the flagpole. In this day and age of technology, headsets for TVs should be a requirement. Huge signs (in English and Spanish) on patients’ bathroom doors saying “For Patients Only” should be a requirement. For doctors, slowing down their speech so they can be understood, should be a requirement. Some pretty simple fixes really. Is the fear a litigious one? Are they concerned the lawyers will step in here?

    But these concerns are all nothing compared to a patient having to take charge and watch what meds are put into their arm to make sure they are the right ones, or whether gloves are being used and tools sterilized before surgery, or double-checking and making sure the hospital knows which patient they actually are, to name a few.

    We place a lot of confidence in a system, which frankly hasn’t necessarily earned it. And, Meena is right that the patient is not necessarily in a position to take responsibility for themselves while they are under hospital care, and that indeed is the very point, isn’t it?

  3. Right on – Lisa! Patience and patients are spelled differently for a reason – power to the patients!

  4. Glad to hear Brutus is doing well. However, it sucks that the medical system works the way that it does. It’s one of my pet peeves. My daughter is 24 and disabled. My whole life has been about advocating for her and I have been called numerous names by the providers – “bad mom”, “b-word.” Not everyone treats empowerment by the patient or the family the same. They don’t always like that I disagree; understand my daughter’s condition and needs and demand they listen to my point of view; or refuse to play their patriarchal power game. The only way a person gets good care is by insisting upon it and, even then, it sometimes doesn’t work. It’s unfortunate that someone who needs a lot of care and doesn’t feel well has to work so hard to get the care they need. I wish I was there, Lisa. I’d go to those appts with you and play “bad cop.” In the meantime, I’m sending lots of positive female energy your way to counteract the patriarchal structures we’re all stuck in.

  5. I was so angry when I read about your experience in clinic I walked away from my computer to blow off the steam. Having worked in hospitals for years I agree that they could have worked you in or at least provided the rational why not, like staffing to monitor or rooms available. I so appreciate Elizabeth’s and Janinie’s frustration in trying to advocate for a family member’s quality care. My mother has been an invalid for almost 5 years, and my dad is now confined to home. The transport of an individual in a wheelchair or on a stretcher to a doctor’s office, treated to the indignity and discomfort of waiting in the reception area for 2 hours because the doctor is late and then waiting for 1-3 hours for ambulance return is am exhausting day for the patient as well as the caregiver plus a PTO day taken. I have so many stories to tell but most of all just wanted to let you know that your friends support you and empathize with the frustration and anger you feel in a system that often does fail the patient. Hang in there, lots of positive thoughts and energy directed your way, and so glad Brutus is doing the job. Pat

    • Always go to a Buckeye when you need something! Pat, thanks for your support and messages through this journey. I’m sorry to hear that your dad is now confined to home. I’m sure that must be tough on you. Hang in there – you are truly an inspiration. Sarah

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