Nephrology Needs More Compassion—and Less Compliance

This blog post was made by Dori Schatell, MS, Executive Director, Medical Education Institute on May 29th, 2015.
Nephrology Needs More Compassion—and Less Compliance

At the NKF Spring Clinicals meeting in March, a comment I was told that someone made at the microphone during a session still bothers me months later. The gist of it was: “Why does all of the responsibility for improving outcomes fall on clinicians—where is the patient in all of this?” [Good point, but it goes on…] “I lose money if my patients don’t reach the quality targets. Why can’t we fine the patients if they don’t do their part?—and audience members applauded!

Really?! We really have nephrologists who believe that punishing patients for not “complying” with their orders is going to improve outcomes? It seems that our community may need a refresher course in compassion.

Let’s start with the obvious. People who have kidney disease:

  • Do not want it
  • Did not ask for it
  • May not have known they had it
  • May not know what kidneys even do
  • May have done nothing to cause it*

Next, let’s look at the challenge of kidney disease a little bit differently. We’ve all seen an occasional story about a young person who raised his or her siblings after the family was orphaned, keeping them out of the foster care system. “How extraordinary,” we think. This type of story is so rare that it is newsworthy. Kidney disease is also a huge, unasked-for burden, and it is extraordinary when people adapt to it easily and do all the complex things they are instructed to do. Most people adapt (if ever) to kidney disease after a lot of kicking and screaming and anger and depression. You would, too.

* “But, some people’s poor health behaviors did contribute to their kidney disease!” I can imagine some of you saying. A lot of diseases, including type 2 diabetes and hypertension, the two leading causes of kidney failure in the US, do have strong lifestyle elements. It’s true that physical activity, eating lots of fresh fruits and vegetables, avoiding high-carb, deep-fried, fast foods, etc. can reduce the risk of these disorders and the damage they cause. But, it’s just as true that some people have pain or injuries and can’t be physically active, or live in places that are unsafe to exercise. And, fresh fruits and vegetables are costly, while the U.S. government subsidizes sugar and grains, so they are cheap.

We do a lot of victim-blaming in nephrology. Here is the type of title I would prefer to never see again: Patient compliance limits the efforts of quality improvement initiatives on arteriovenous fistula maturation.”1 In this study, a vascular surgery group set a schedule of office visits and fistulograms and used a patient liaison to call people, with the aim of reducing time to first cannulation. But, among 198 participants, the practice only influenced the first surgeon visit—not the follow up appointments, which “demonstrated a very high noncompliance rate.” (Compliance is a dirty word that should never be used in relation to people with a chronic disease, in my opinion.)

Fistula
Fistula

As someone who has had long-term contact with an estimated 15,000 people with CKD over the past 26 years, I would interpret their finding quite differently: Surgery is scary. Having your body permanently altered to treat a disease that could be fatal is a terrifying prospect. At the first surgeon visit, people don’t know what to expect. Once they learn what a fistula is—and perhaps even see photos—(let alone find out about the needles) they don’t want to go back.

To gain some insight, I asked a social media group of dialysis consumers why they didn’t get a fistula when their doctor asked them to. Some couldn’t, due to chemo-burned blood vessels, no vascular surgeon in the area, or a pending preemptive transplant. Others said things like:

  • That river in Egypt...

  • I didnt because in hopes of never or for a very, very long time of going on hemo permantly.
  • Denial..........putting it off till I was so sick, I couldnt deny it any longer.
  • There were many great reasons that I would rattle off to my Nephrologist every time he mentioned the "F" word. I knew that I did not have good veins, they are small and very branched (the surgeon comfirmed this during the mapping). I also was exemly afraid of needles and did not want them in my arm. I was active and did not want the fistula to slow or hinder any of my physical activies. But the deepest rooted reason was it ment that dialysis would be long term.
  • I googled fistula and seen pictures of scary snake looking arms.
  • I was stunned at the news I was going to have to have dialysis...... I asked no questions, was like a zombie.
  • Fear of commitment.

  • Pictures of people's fistula online. Coming to terms with the fact that it's for real now there's no chance of coming off it like the drs said I might.
  • Petrified of needles and my stomach turns when i see blood. Have told my consultant under no circumstances am i having a fistula.
  • When I was first questioned about a fistula and about PD I will never forget the doctor said: Getting a fistula I will get money. EXACT WORDS. I was not happy. It was my arm he was talking about.

Instead of insisting that people must “comply,” offering understanding and compassion—and, most of all, HOPE that a good life is possible even with kidney failure—may go much, much further toward helping people take on the self-management role that is so vital to long-term success with chronic disease.

For educational materials that support this approach, check out:

Staying Healthy with Stage 3 CKD– New booklet, viewable online.

Living the Life You Want with Stages 4 & 5 CKD– New booklet, contains all ESRD treatment options, including conservative management.

Help, I Need Dialysis!– A comprehensive guide for consumers and families that is also great background about all of the types of dialysis for professionals. MEI even offers CE credits for nurses, techs, and social workers in a package deal for the book.

My Life, My Dialysis Choice– A free, online decision aid based on the book.

Kidney School – Free, tailored, online education in 16 modules, with CE credits for professionals.

  1. Lynch SK, Ahanchi SS, Dexter DJ, Glickman MH, Panneton JM. Patient compliance limits the efforts of quality improvement initiatives on arteriovenous fistula maturation. J Vasc Surg. 2015 Jan;61(1):184-91

Comments

  • Kamal D Shah

    Aug 19, 8:50 PM

    Brilliant post Dori. Sharing like, everywhere!

    Reply to this Comment

    * All fields are required.

    1. Your email will not be displayed publicly
    • Dori

      Aug 20, 9:32 AM

      Thanks, Kamal!

      Reply to this Comment

      * All fields are required.

      1. Your email will not be displayed publicly
  • Nick Phillips

    Jun 11, 4:34 PM

    Good Day. I am a Canadian PD/Hemo patient who was lucky enough to have a nephrologist and positive nurse support in both the PD and Hemo areas. Been on Hemo for 18 months but finally am doing home twin bag PD complimented by 1 day of Hemodialysis a week. Took 20 months, 4 catheter replacements and 3 repositioning of catheter to finally be able to come off 3 day a week Hemo. I am happy they were not satisfied that my not be able to lie and drain would not eliminate me as could not use machine. Thankful my doctor did not give up.

    Success to all and let us home the reseachers will be successful with artificial kidney development or better an end to many diseases.

    Reply to this Comment

    * All fields are required.

    1. Your email will not be displayed publicly
    • Dori

      Jun 15, 8:42 AM

      PD + HD is *very* rare in the US, Nick, but I have heard that other countries may use this combination more often than we do. I second the wish in your last sentence!

      Reply to this Comment

      * All fields are required.

      1. Your email will not be displayed publicly
      • Nick Phillips

        Jun 15, 3:22 PM

        Good Day ..... PD and Hd together is not common here either. Decided to try as 2 previous home attempts failed due to no UF and weight gain as a result. Rarey done. Hopefully it will be able to give some more patients a chance to be at home benefitting from PD. Just some diet/fluid adjustments. and a excellent support team.

        Reply to this Comment

        * All fields are required.

        1. Your email will not be displayed publicly
  • Jim Stevens

    Jun 1, 12:58 PM

    Fortunately I am one who has had to non-related living donor transplants. But did spend several months on in-center hemo-dialysis and knew that there was no way I wanted to stay on HD. Fortunately my kidney function improved to right about 20% and I could get off of it.

    My youngest sister is a good example of someone that has been on in-center HD for seven years now. But she was withering away slowly until a Pulmonologist (she has a serious lung condition) this February while in the hospital had a serious direct conversation with her, essentially asking her if she wanted to live because as he put it, she was just existing on in-center HD. But he did not just give her an inspirational "pep" talk; he took charge and had her placed in a rehab hospital to gain weight (she was down to 86 pounds) and get rehab to build her body, mind and lungs up for an eventual combo transplant. She has completed the necessary work-up and has gained 23 pounds and has built her lung capacity up that both the Kidney and Lung transplant units at the hospital she is associated with has placed her on the list.

    The Pulmonary Doctor that had not only the compassion and directness to talk with my Sister about improving her situation but actually was a person of action that got things done. He is an example for the types of Doctor's/Nephrologists/Transplant Surgeons we need working with ESRD patients. Not those that focus on compliance but focus on what can be truly done to improve the quality of life for patients on in-center dialysis; certainly not all patients can do home dialysis, but what improvement would patients see if they had one more day of in-center dialysis, nocturnal dialysis if practical and just as important, the compassion by the medical staff starting with Doctors leading the way to understand what these patients are going through in their daily lives.

    Thanks to one compassionate Doctor that truly cared, my Sister sees the hope of being able to live a better life that will allow her to spend even more quality time with her family and her grandchildren.

    Dori, thanks to you as always for addressing situations that sometimes are difficult to address in this World today.
    Along with your compassion, you are to be applauded for your courage of your convictions and taking action on them.

    Reply to this Comment

    * All fields are required.

    1. Your email will not be displayed publicly
    • Dori

      Jun 2, 2:18 PM

      Wow, Jim, thank you so much for taking the time to share your sister's story. Her doctor truly did reach out personally and save her life! He didn't just watch her deteriorate, he gave her HOPE and ACTION to make things better. I have to believe that if we gave folks better dialysis, they would not reach the point that she did. I hope a transplant comes through soon for her.

      Reply to this Comment

      * All fields are required.

      1. Your email will not be displayed publicly
  • John Agar

    May 31, 9:10 PM

    When I read of comment such as the one in the opening paragraph of your post, Dori ... and the apparent acclaim it received ... it makes me shiver to think I belong to 'the same breed'. But, while there is absolutely no defense for such blighted and benighted views - none at all, and those that purvey them should be ashamed (and more) - there ARE some good, compassionate and caring renal physicians (for that is what we are called here ... note, no use of the 'N' word) who ARE working hard for their patients, and who can only now be hoping that you will not tar them all with the same brush.

    Reply to this Comment

    * All fields are required.

    1. Your email will not be displayed publicly
    • Dori

      Jun 1, 12:07 PM

      I know some renal physicians--you included--who are passionate advocates for people with kidney disease, and some of my very favorite people. And, then there are some folks who have no business being clinicians. Or, maybe the problem is that being a clinician is ALL about business, and they've lost track of why they wanted to go into medicine in the first place... There are easier ways to make money, if that's what someone is after!

      Reply to this Comment

      * All fields are required.

      1. Your email will not be displayed publicly
  • Peter Laird, MD

    May 30, 5:54 PM

    The comment at the NKF is not surprising to me at all after over 8 years on dialysis. The simple truth is that the horrible US outcomes are In large part iatrogenic in nature and not because of "bad" patients.

    I dealt with "noncompliant" patients quite frequently in my own internal medicine practice. There are many reasons why patients do not adhere to treatment recommendations.

    In dialysis, when patients go to a clinic and then have several liters of fluid taken off that causes lightheadedness, nausea, severe cramping, passing out followed by unbearable fatigue from organ stunning and severe headaches, is it any wonder that folks don't want to show up for treatments?

    I see the walking wounded when I go in for my monthly home hemo visits. The negative incentives for usual in-center hemodialysis make the association between dialysis and personal misery an inescapable conclusion.

    It did not take me long to understand the dynamic demonstrated at the NKF as an adversarial role for those who are charged as my advocates. The dialysis unit is the most dysfunctional of all,the medical settings Imhave encounters as both a physician and a patient. Let this report be a wake up call to those who have yet to understand the fundamental adversarial relationship between patients and providers in dialysis units. Understanding this basic element in the doctor patient relationship,of far too many nephrologists leaves you with the only survival strategy of learning about your own options and choices. I have fought many battles within the dialysis unit to simply enact a sustainable treatment program. I seriously doubt I could have succeeded to date without my background medical knowledge. However, there are many patients I know who have also successfully navigated this hostile industry. Knowledge is the key.

    Reply to this Comment

    * All fields are required.

    1. Your email will not be displayed publicly
    • Dori

      May 31, 4:12 PM

      "The negative incentives for usual in-center hemodialysis make the association between dialysis and personal misery an inescapable conclusion." THAT'S on CMS, IMHO, Peter. Until they change the reimbursement to create incentives for OPTIMAL treatment, all anyone will routinely get is the minimum--and then when people feel awful, the staff will blame them for not "complying."

      Reply to this Comment

      * All fields are required.

      1. Your email will not be displayed publicly
  • David Rosenbloom

    May 30, 5:36 PM

    Dori, you and I have spoken often of the need to deep-six the "C" word.
    As the previous comments have noted, it's not easy to be "a good patient" given all the emotional horrors and real pain we suffer on inadequate, in-center dialysis.

    I'd like to refocus the discussion on the 50+-year-old medical paradigm that has raised the original, stopgap 3x/wk. dialysis regime to become gospel and good medical practice. Maybe if the medical profession would finally own up to the fact that the are largely providing non-rehabiliatative treatment, woefully out-of-date, then maybe they would understand why so few persons with ESRD are not doing well ("C" word omitted).

    Reply to this Comment

    * All fields are required.

    1. Your email will not be displayed publicly
    • Dori

      May 31, 4:17 PM

      Exactly, David. I completely agree. Don Berwick liked to say that "Every system is perfectly designed to achieve exactly the results it gets." So, that would seem to indicate that the US dialysis system is designed to maximize profits for for-profit companies by paying for minimal treatment instead of looking at the science. We don't even collect national data on treatment length, ultrafiltration rate, or dialysate temp--three metrics that turn out to be absolutely essential. There is gaming in some of the other key metrics, like whether people have fistulas, grafts, or catheters, or their "adequacy" numbers. This kind of comment points to a bigger system issue, and the focus on "compliance" is just the tip of the iceberg.

      Reply to this Comment

      * All fields are required.

      1. Your email will not be displayed publicly
  • Margaret S

    May 30, 4:27 PM

    if we turned it around and asked if our nephrologist a were "compliant" in helping those of us with CKD to live a full and functioning life, I think we'd find a lot of non-compliance too. When doctors make rounds in a clinic, spending 2 or 3 minutes with each patient, not really asking anything or giving pat answers, patients lose hope of there ever being better. We know there are ways for people on dialysis to feel better but if you don't work to make that happen then you, doctor, are failing my expectations too.

    Reply to this Comment

    * All fields are required.

    1. Your email will not be displayed publicly
    • Dori

      May 31, 4:19 PM

      Absolutely, Margaret. Loss of hope is the biggest injury of all, I think. People can survive almost anything if they have hope--and almost nothing if they don't. On the door of our office, next to our mission, we have a plaque that is a quote from Gregory White Smith, a brain cancer survivor. It says, "“It’s all about control. Take away a patient’s sense of control over his life, and you have hurt him more than any injury or disease. Give him back that sense of control—and you have helped him more than any drug or therapy. He can make miracles happen.”

      Reply to this Comment

      * All fields are required.

      1. Your email will not be displayed publicly
    • Amanda

      May 30, 6:07 PM

      what a great point, Margaret, now would that be a great around term is Medicare required compliance. If it expected of us, why not of nephrologists? Maybe we as patients, should decide if the word compliance is brought up by are nephrologists, we should just do a stroke of our chin and ponder their compliance with them. After all, they get paid, we don't

      Reply to this Comment

      * All fields are required.

      1. Your email will not be displayed publicly
  • Brenda Rawson

    May 30, 2:48 PM

    I began home peritoneal dialysis in January 2015. A few of my doctors tried to put me on hemp, but I fought this.
    I am terrified of that procedure which filters your blood via your main artery going to your heart. Also I am fairly active for my 64 years & would hate being tied up in a clinic 3 times a week for 4 hours.

    I got a automatic dialyser a few months ago & it has definitely freed up my days.

    Those who criticize patients for problems with their care a cruel, lazy & unprofessional. There are many very complicated steps & extensive charting the patient must do.
    I really feel for older patients who are uneducated who struggle to do home PT.

    I am very fortunate in having
    An extremely caring dialysis nurse who
    Is there for me when I need her.

    Reply to this Comment

    * All fields are required.

    1. Your email will not be displayed publicly
    • Dori

      May 31, 4:22 PM

      Brenda, you were lucky that you did enough homework to know what you did and didn't want--and were able to advocate for yourself. Sadly, 8 years after Medicare put a regulation into effect requiring that people be educated about ALL of their options and where to get them, we are still hearing from people who never knew there was anything but standard in-center HD...

      Reply to this Comment

      * All fields are required.

      1. Your email will not be displayed publicly
  • Amy Staples

    May 30, 2:18 PM

    I am sitting here absolutely appalled and gobsmacked that someone would not only say this but that all the others applauded. Where have we gone wrong that healthcare team members would expect the patient to fulfill the nephrologists expectations like this??? The person on treatment should never be blamed for a nephrologists or care teams quality improvement goals. Let's start by actual research, education and informing persons AFTER we have actually listened to them, their concerns etc. I am a person on dialysis. I've been harmed permanently by those who refused to listen to me. Listening (actively) is the first step. Blessings

    Reply to this Comment

    * All fields are required.

    1. Your email will not be displayed publicly
    • Dori

      May 31, 4:23 PM

      Appalled was pretty much my reaction. News flash: We are not here to meet our physicians' expectations or to boost their revenue streams. Medicine in the US has gone much too far toward profit and away from healing...

      Reply to this Comment

      * All fields are required.

      1. Your email will not be displayed publicly
  • Steve Wimer

    May 30, 12:58 PM

    As a patient I can understand the frustration doctors feel toward non-compliant patients. But as Johanna points out the brain fog and memory erasure I feel everyday after 11 hours of treatment impedes forward progress. It's also difficult to get your sleep with the machine pumping and draining from the body all night long. I won't even start about constipation, too much fluid in the stomach during treatments, and adverse reactions to prescription drugs. Doctors also send mixed messages. They say eat your protein in one breath, and then avoid phosphorus in another.

    Reply to this Comment

    * All fields are required.

    1. Your email will not be displayed publicly
    • Dori

      May 31, 4:24 PM

      Those are excellent points, Steve. A number of doctors have moved away from the eagle-eye on phosphorus, and acknowledged that it's more important to get protein and just take binders.

      Reply to this Comment

      * All fields are required.

      1. Your email will not be displayed publicly
  • Amanda Wilson

    May 30, 10:57 AM

    what a pity you cannot name and shame that sanctimonious ***** ( insert whatever derogatory term you want to into here). Then whoever is his/her patient could hotfoot it way from him/her and allow market forces determine his/her fate. Someone with this mindset should not be practicing medicine. They are clearly more interested in the money they earn than the patients who invest their trust in them. SMH

    Reply to this Comment

    * All fields are required.

    1. Your email will not be displayed publicly
    • Dori

      May 31, 4:20 PM

      Luckily for that person, Amanda, I didn't know who he was. :-)

      Reply to this Comment

      * All fields are required.

      1. Your email will not be displayed publicly
  • JOHANNA

    May 30, 10:47 AM

    As a social worker in a HD unit I saw the lack of compassion daily. Compliance was the buzzword used to identify the good patients and the bad patients. Understanding of the symptoms that impact the patients including brain fog and fatigue was missing. Now, as a patient it is becoming clearer to me how much this disease impacts the way my brain functions! It is astounding; we would not expect compliance from a person not capable of recall. Why expect it from people who are sick, whose very complex disease requires a change in all that they know, at a time when the brain is not working!

    Reply to this Comment

    * All fields are required.

    1. Your email will not be displayed publicly
    • Dori

      May 31, 4:26 PM

      Having a patient and professional perspective makes YOU a valuable advocate, Johanna. I hope you'll think about sharing your perspective. We welcome guest blog posts, for example.

      Reply to this Comment

      * All fields are required.

      1. Your email will not be displayed publicly
  • Lana Schmidt

    May 30, 9:02 AM

    Great article... This is the very thing I brought up at the medical review board meeting in our area... mostly dr's from 4 states.
    How long is it going to take for the medical staff to have compassion for the kidney patients as they do with cancer patients?
    Really need to get this article out to more media... I will share on my fb page.

    Reply to this Comment

    * All fields are required.

    1. Your email will not be displayed publicly
    • DOri

      May 31, 4:26 PM

      Thanks, Lana! Appreciate the share. :-)

      Reply to this Comment

      * All fields are required.

      1. Your email will not be displayed publicly
Leave a New Comment

* All fields are required.

  1. Your email will not be displayed publicly