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.)
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.
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 20, 2015 1:50 AM
Dori
Aug 20, 2015 2:32 PM
Nick Phillips
Jun 11, 2015 9:34 PM
Success to all and let us home the reseachers will be successful with artificial kidney development or better an end to many diseases.
Dori
Jun 15, 2015 1:42 PM
Nick Phillips
Jun 15, 2015 8:22 PM
Jim Stevens
Jun 01, 2015 5:58 PM
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.
Dori
Jun 02, 2015 7:18 PM
John Agar
Jun 01, 2015 2:10 AM
Dori
Jun 01, 2015 5:07 PM
Peter Laird, MD
May 30, 2015 10:54 PM
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.
Dori
May 31, 2015 9:12 PM
David Rosenbloom
May 30, 2015 10:36 PM
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).
Dori
May 31, 2015 9:17 PM
Margaret S
May 30, 2015 9:27 PM
Dori
May 31, 2015 9:19 PM
Amanda
May 30, 2015 11:07 PM
Brenda Rawson
May 30, 2015 7:48 PM
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.
Dori
May 31, 2015 9:22 PM
Amy Staples
May 30, 2015 7:18 PM
Dori
May 31, 2015 9:23 PM
Steve Wimer
May 30, 2015 5:58 PM
Dori
May 31, 2015 9:24 PM
Amanda Wilson
May 30, 2015 3:57 PM
Dori
May 31, 2015 9:20 PM
JOHANNA
May 30, 2015 3:47 PM
Dori
May 31, 2015 9:26 PM
Lana Schmidt
May 30, 2015 2:02 PM
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.
DOri
May 31, 2015 9:26 PM