How entitlement undermines patient engagement

I know the ropes at the VA … I’ll pick up the phone in a heartbeat and call my senator and get what I need right away. A lot of guys aren’t like that.
–Max Gruzen, PTSD patient, Vietnam veteran from the New York Times

So this is what it means to be an “engaged” patient in the VA system today. You have to know a senator who will intervene on your behalf, to give your health care a priority higher than his other constituents and other senators’ constituents from all over the country. Just to get what you need: even if only an appointment with a primary care physician or specialist.

I read this quote with deep discomfort, the same way I react when I hear some hospital executive who is not receiving fast enough attention at his hospital’s security desk snap, “Young lady, do you know who I am?” Or the same uneasiness I feel when I take advantage of my husband’s staff ID at the medical center where he works so I can jump the line of waiting patients in the emergency department.

I hate seeing this. Even more, I hate participating in it. But most of all, I hate that I am treated in a health care system where even those who are most accountable for the quality of the care it provides (the institutional leaders) can’t trust the institution or the professionals who work there to routinely and uniformly deliver excellent care.

Those of us who believe we are special — that some privilege gives us the right to receive care that exceeds the routine — don’t operate in the belief that all care delivered at this hospital is excellent. We don’t believe that every patient treated here receives the best care the staff can deliver. We know that isn’t true and we don’t even bother to pretend it is.

I don’t know what kind of rainbow I’ve been gazing at, but I liked it better when I thought that the kind of patient engagement that was going to make a difference to my health outcomes was something I could significantly influence, as long as I possess and apply the right knowledge, skills and motivation. You know, where each engaged patient — each veteran, for example — would gather up his or her energy and focus on finding out how to get good care and then follow through on recommendations like organizing all those appointments or taking the pills as directed or losing the ten pounds before Christmas.

The public increasingly recognizes that health care demands more of our attention and skills as greater responsibility for care is shifted onto us and our families. While we will always face stiff challenges from a system with scant responsiveness to our individual needs, those of us committed to patient engagement believe that our participation can make a difference to our health outcomes.

And then along comes this story suggesting that what veterans really need in order to get effective health care is a good relationship with a senator.

Patient engagement is a critical issue right now because our ability to benefit from our care depends so profoundly on our individual abilities to take on complex and unfamiliar tasks while our capacity to perform them varies greatly. Any assumptions about the equity of health care are called into question when so many responsibilities for our care fall to us.

Our individual deficits and weaknesses, e.g. health literacy, education or economic status, already undermine our ability to fully benefit from the medications we take, the devices we need to master and the self-monitoring tasks we must perform. If you are ill already or you have to manage a complex chronic condition but struggle with reading and numbers, or if you find yourself coordinating your care by hand-carrying all your notes and tests from doctor to doctor, you are already significantly disadvantaged in your effort to get the most out of your health care. Relying on indicators of privilege or access to power also signals that, over and above changing our own behavior, the biggest challenge of patient engagement is to shape the system so it facilitates, guides and supports the actions of patients and family members.

Only with considerable work will we get to the point where all of us (patients, clinicians and administrators) believe that the care delivered by our clinicians at our hospitals is uniformly excellent, that the needs of each one of us who walks in the door are treated with similar haste and attention.

Until then, those who feel entitled to better care because of who they know or the position they hold will not only make that erroneous claim but will also continue to benefit from a system that has no problem admitting that it delivers better care to those with connections than to those without.

The rest of us should be ready to search for our own pet senator or lofty hospital board member if we want to find good health care and make the most of it.

Jessie Gruman is the founder and president, Center for Advancing Health. She is the author of Aftershock: What to Do When You or Someone you Love is Diagnosed with a Devastating Diagnosis. She blogs at the Prepared Patient blog.

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  • QQQ

    “Until then, those who feel entitled to better care because of who they
    know or the position they hold will not only make that erroneous claim”

    ————————————————————————————————————–

    I listened to a bumbling woman go on a rant about the prophecy of the
    redistribution of wealth. She believes she is fully entitled to receive
    other peoples hard earned money to thrive. . She stated that it was in
    the Bible, the redistribution of the wealth and that she would be one of
    the rich ones. With her government phone, free internet, childcare, FIA
    paying her rent and utilities plus food stamps. Got a voucher from the
    Government to buy a car. I receive none of these so called “free” benefits. Do not expect to.

    Her take on Obamacare. She already gets Medicaid but thinks more people should get free health care. I asked her if she thought I should get free health care. She told me no, I was not underprivileged. LOL (I am white and she is black, go figure) 50% of her income comes from tips. I report mine. I would guess
    she does not or else how would she qualify for all the freebees? Her
    husband, yes she is married works too, part time. But they are separated
    and working things out Bet big daddy government who is paying their way
    does not know he lives with her. Am I racist? YES I AM. I’m sick of
    being discriminated against for being white

    • Patient Kit

      Entitled attitudes coming from the poor seem to bother you way more than entitled attitudes coming from the affluent and well-connected. And really, I have to say this: Admitting you’re a racist does not make it ok to be a racist.

    • Patient Kit

      Wow. I can’t believe my response to this was not only deleted but erased without a trace. If it’s okay to post in all caps YES I AM (a racist) but it’s not ok for me to respond to that, maybe it’s time for me to step away from this blog.

      • http://onhealthtech.blogspot.com Margalit Gur-Arie

        It is very important that you don’t do that here, or any other marketplace of ideas….

        • Patient Kit

          I didn’t even use any obscenities. All I said was: Admitting you’re a racist does not make it ok to be a racist.. It was a very short response, now gone with the wind.

          • http://onhealthtech.blogspot.com Margalit Gur-Arie

            Let it go, Kit. It’s not important in the larger scheme of things discussed here….. You are making an incredibly important contribution to the narrative, so stay with it…. for the long haul…

          • JR

            The comment you responded to didn’t express sophisticated knowledge. For instance, you can’t really get away with not reporting tips anymore. If the cash receipt tips do not match up with the cc receipts, the government assumes you are lying about your cash tips and taxes you for it.

        • DoubtfulGuest

          Margalit, with all respect, what motivated you to correct PK? I, too, am confused as to why her comment is not acceptable but QQQ’s is. We all get deleted sometimes. A follow-up slap on the wrist and then telling someone to let it go doesn’t seem like SOP? When you do that, you’re likely to get a response. Unless I have the order of replies mixed up…but it sure looks that way.

          I believe what QQQ is referring to is what people call “reverse discrimination” or just plain discrimination. That could be a topic for debate/disagreement but QQQ takes it in a different direction.

          I have also felt that you corrected me unnecessarily, but at least those were your posts. Is there any other underlying issue we should be aware of? Something doesn’t quite add up.

          • http://onhealthtech.blogspot.com Margalit Gur-Arie

            What I said was that she should not leave this site, as she was contemplating to do… I hardly think that was “correcting” her…

          • DoubtfulGuest

            I’m referring to this: “It is very important that you don’t do that here, or any other marketplace of ideas….”

            I can’t find where she said she’s thinking of leaving?

            Online communication is challenging. I ask that you understand that you come across as sharply corrective to patients sometimes. For my part, you asked for brainstorming in a previous post and I came up with something that wasn’t great. You told me to “read carefully”. “Brainstorm”, though, means that ideas are generated quickly, without careful evaluation until later. More recently, I asked for clarification on how patients can help their doctors. I was aware that a lot of it was a rehash, but I had specific concrete reasons for my question for which I’ve never received a clear answer.

            Lots of other people are reading this stuff and trying to decide whether or not they might like to join the discussion…

          • http://onhealthtech.blogspot.com Margalit Gur-Arie

            Her comment was deleted. You are reading this out of context. The word “that” referred to “time to leave this site” or something like that. It is important to me that she does not leave, and that she keeps posting here….
            This is becoming a learning lesson for me as well, so thank you for the comments. I will try to post only if I can be crystal clear in the future…

          • DoubtfulGuest

            Okay, yes, I came in late and the comments being gone now makes it hard to understand. I see what you’re saying. Thank you for considering my thoughts. I really want to get along with everyone here and have made quite a share of missteps myself.

            The important thing to me is that misunderstandings get resolved. If we’re too afraid to have misunderstandings, the discussions would get pretty stale. Your posts are an important resource for patients to understand the health care system better. We each have our own strengths and contributions here. Your willingness to clarify helps a lot.

          • JR

            MGA was encouraging PK to stay and continue to be a part of the community. I was trying to be supportive to her too, I hope it came across.

          • DoubtfulGuest

            I see that now – Whoops! Your comment was clearly supportive of PK, no question. But I see MGA’s POV now, too. I mistakenly thought the focus was the conflict between QQQ and PK re: racism and I couldn’t for the life of me figure out why PK didn’t come out ahead.

            I used to wonder why people so often quote the other person to whom they respond…Well, 1) They’re often only responding to part of it, but also 2) The first comment might disappear later, and then all context is lost. :/

          • Patient Kit

            It did. Thank you, JR.

          • Patient Kit

            All is well. I’m still here. KMD is stuck with me. ;-). I was momentarily frustrated — ok, outraged — that a racist post was allowed to stand while my response to that post was deleted. When someone posts something outright, almost proudly, racist, I have to call them out on it. I could not understand why initially only my response was deleted.

            I had a busy day working — first day on a new job (short term freelance with no health insurance but it will pay the rent). First time working since my OVCA dx. Only time will tell whether I’m headed to being uninsured again. But I will be sure to report on my fate in our healthcare system going forward.

            I didn’t take any offense from your comment to me, Margalit. In fact, just the opposite. It’s nice to know that someone as smart as you appreciates my two cents and wants me to continue posting. I’m sure a few peeps here wish I would go away but I’m not a good retreater. But I really took offense at my particular post being deleted. I’ve calmed down now. :-D

          • http://onhealthtech.blogspot.com Margalit Gur-Arie

            Congratulations on the new gig!!! That’s exciting stuff……

          • Patient Kit

            Thanks! It’s not that exciting, LOL, but it’s a good first step toward stabilizing and rising from the ashes from this past year. I’m working with nice, down-to-earth people and I’m mostly writing and editing, although not about anything I’m passionate about like healthcare reform and the ocean. But it is good to be back to work in the energetic bustle of Manhattan. I just wish I didn’t have to worry about whether I’ll be able to continue accessing the medical care I need. But so far, I’ve had an angel on my shoulder through this OVCA odyssey. I’m just going to take a leap of faith that I will land on my feet and survive, even thrive. Hopefully, this Barbara Ehrenreich/The Wire/Alice in Wonderland chapter of my life is coming to a close soon. I can — and do — hope.

          • Anne-Marie

            Good luck, Kit. I’m rooting for you.

          • Patient Kit

            Thanks, DG. I was upset last night and, for a split second, I considered leaving KMD. But it had nothing at all to do with anything that Margalit said.

        • ninguem

          Margalit

          In the marketplace of ideas, am I Friedman’s Railroad Salvage?

          • http://onhealthtech.blogspot.com Margalit Gur-Arie

            Wow… I thought it was a local dump…. Do they have one where you are too?

          • ninguem

            No, I used to live in Missouri.

          • http://onhealthtech.blogspot.com Margalit Gur-Arie

            Makes sense… we have plenty of dumps here :-)

  • ninguem

    In the UK it’s called “postcode lottery”.

    If you live in an area where the people are well-to-do and politically connected, the National Health Service is far more responsive to patient needs, than a rural or urban poor area.

    • JR

      That’s how the US school system works.

      • Patient Kit

        Zip codes, addresses, neighborhoods matter a lot on resumes in the US too. I’ve met a lot of job hunting poor people during this last year while I’ve been on Medicaid who deeply lament having to put their address on their resume because they know where they live will be held against them.

        • JR

          Really! Wow, I had no idea.

          • Arby

            This is just sad. Welcome aboard though.

      • ninguem

        Everybody is supposed to be treated equally in Chicago too, but when your daughter is dating a City Alderman……

        http://www.youtube.com/watch?v=45aJNQ43ckc

        • buzzkillerjsmith

          Why did Al always have his hands in his pants?

          • ninguem

            I’m not sure I wanna find out.

          • Buzzy123

            not me…..

    • Arby

      So much for all receiving good healthcare. I guess good enough is the point.

      To your point, when I was younger I had a roommate and together we could afford to live in a “higher-end” apartment complex. I don’t expect you’d be surprised at how differently I was treated for many things although apparently it is a new idea here. Anyway, I wouldn’t give my address right away as often it wasn’t what was required in until later in a transaction. But, you should have seen how the perspective changed when I gave them my address. Funny in a sad way actually.

      • Patient Kit

        It’s not new to me. For decades, I’ve been getting in taxis, closing the door and refusing to get out before giving the driver the address of my destination. Now excuse me while I go try to figure out whether posting this was well-meaning or not.

  • http://www.mightycasey.com/ MightyCasey

    This issue is woven into pretty much every part of American life. The US isn’t unusual in this – witness the postcode lottery comments from the UK already posted – but the bedrock here is that, in spite of our national lip-service to the ideas of democracy and equality, we’re really kinda neither.

    I raise my voice daily, encouraging all people-commonly-called-patients to educate themselves so they can act on their own behalf to access good care on behalf of themselves and their families. In the current landscape, that education/action does indeed include learning how to reach out to their reps (state and/or federal) to press their case, if necessary.

    This isn’t a race issue. Entitlement is woven into the very foundation of our nation, first codified in the Constitution’s pretzel logic vis a vis slavery as a determinant for legislative districting. It hasn’t really improved since, with women only getting fully franchised 94 years ago. The Civil Rights Act is just 50 years old, and is still a conundrum in most southern states.

    The American system has never really been equal-access, but the promise that it *might* be keeps most of us reaching for the prize. That’s some clever long-term marketing right there …

    • Buzzy123

      As someone that for a living has traveled all over the world I can tell you with confidence that with some notable exceptions in Europe, and some of the former British possessions like Canada, Australia, NZ and a few other places “Who” you are counts more than in the United States for getting services from their government or even at a more fundamental level the safety of you and your family from government privations.

      • Eric W Thompson

        I agree. In most parts of the world who you are and who you know are the most important pieces in the puzzle of what you can get.

      • SteveCaley

        When I worked at the VA, I’d notice that the ones with the rude families got lots of attention. I remembered that my job was to look out for the little guys who were all alone. They were “my family.” sorta.

  • guest

    Quite honestly, as a physician who patiently waits her turn to be seen in the ED and would never dream of using my ID to skip the line, let alone use my spouse’s ID for that purpose, I am a little perplexed about what waiting your turn ha

  • buzzkillerjsmith

    Well, I don’t know. Being special has its rewards.

    When I go to the doctor, or the post office, or the DMV, or Napa Auto Parts, or Circle K to buy some Camels and crunchy Cheetos, I bring along my nonfunctional cell phone and say in a loud voice, “Nurse, give that pancuracilium stat! No, not orally, you foolish woman. Inject it into the spinal canal. I’ll be in in about 3 hours. ”

    People then ask me if I am a doctor and I tell them I am and that I am very, very busy saving lives and stamping our disease. And then I cut in line.

  • Buzzy123

    What you say is true and somewhat depressing-but why should health care be any different than education, police and other municipal services or access to the President or Presidential candidates based on the size of your donations or in a similar manner when trades people respond to a number of service requests they pick the jobs with larger potential income for themselves
    The fact is that in some sense modern society (and certainly not just the US) is corrupt–or in other words “money talks”

  • Eric W Thompson

    In the VA most patients seem to wait their turn. A few will call the Congress when they don’t like what they hear. Want unlimited narcotics, elective surgery when morbidly obese/smoking and etc. Plus VA employees are not allowed to comment. Even when patients who have made death threats to staff and/or other patients go to the media, zero response; grin and bear it. Most of the back story to the VA debacle has never made it to print.

  • Patient Kit

    LOL! for some reason I never get any yacht or jet junk mail in my mailbox in Brooklyn. Good hospital zip code (10021) though. NY Presbyterian-New York (Weill Cornell), Hospital for Special Surgery, Memorial Soan Kettering, Lenox Hill. I’ve been treated as a patient in that zip. Good thing we don’t have to live in that zip to go to those hospitals and see those docs.

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