Is a Patient-Centered Dialysis Behavior Contract Possible?

This blog post was made by Beth Witten, MSW, ACSW, LSCSW on November 9th, 2017.
Is a Patient-Centered Dialysis Behavior Contract Possible?

Sometimes I read posts from social workers on the National Kidney Foundation’s (NKF) Council of Nephrology Social Workers (CNSW) listserv asking for a template of a “behavior contract.” Social workers want to know how to motivate patients to behave differently. Some dialysis clinics ask patients who exhibit challenging behaviors to sign a contract to avoid consequences. Examples of challenging behaviors include but are not limited to swearing or yelling out, arguing with staff or patients, skipping or shortening in-center or home dialysis treatments, not attending home dialysis clinics as scheduled, and not providing home records as often as requested. Establishing a contract implies that both the clinic and the patient will get something of value—the clinic will see a behavior change or if the behavior doesn’t change, there will be consequences for the patient and the patient will get dialysis. Some clinics threaten discharge and others have discharged patients for infractions that are not allowed reasons for involuntary discharge. If the clinic follows through on discharge, the patient may file a grievance with the ESRD Network and/or a complaint with the state survey agency, either of which could bring additional investigation of patient behaviors and clinic actions.

Staff need to understand that the Conditions for Patients’ Rights in the ESRD Conditions for Coverage (CfC) at 42 CFR 494.70(a) grants multiple rights. Among these are the right to participate as fully as desired in their care, to refuse or discontinue treatment, to be informed of ALL treatment options and settings, to receive services in their plan of care, to be informed of the clinic’s rules and expectations for behavior, to file an internal and/or external grievance without fear of reprisal or denial of services. Dialysis staff should recognize how hard it is for patients to file a complaint or grievance out of fear of being labeled as a “difficult patient.” Instead of viewing a patient’s complaint or grievance negatively, it could be helpful to listen to patients’ complaints and viewing grievances as opportunities for improvement.

The ESRD CfC also requires patients to be informed about policies for routine or involuntary transfer/discharge and to receive a 30-day notice of involuntary discharge unless he/she presents an “immediate severe threat.” The Interpretive Guidance, which helps ESRD surveyors determine the dialysis facility’s compliance with the regulations, describes what behavior rises to that level.

The Condition for Governance at 42 CFR 494.180(f) provides only four reasons to involuntarily discharge a patient and requires that the medical director “ensures that no patient is discharged on transferred unless--

  1. The patient or payer no longer reimburses the facility for the ordered services;

  2. The facility ceases to operate;

  3. The transfer is necessary for the patient’s welfare because the facility can no longer meet the patient’s documented medical needs; or

  4. The facility has reassessed the patient and determined that the patient’s behavior is disruptive and abusive to the extent that the delivery of care to the patient or the ability of the facility to operate effectively is seriously impaired, in which case the medical director ensures that the patient’s interdisciplinary team—

  5. (i) Documents the reassessments, ongoing problems(s), and efforts made to resolve the problem(s), and enters this documentation into the patient’s medical record;

    (ii) Provides the patient and the local ESRD Network with a 30-day notice of the planned discharge;

    (iii) Obtains a written physician’s order that must be signed by both the medical director and the patient’s attending physician concurring with the patient’s discharge or transfer from the facility;

    (iv) Contacts another facility, attempts to place the patient there, and documents that effort; and

    (v) Notifies the State survey agency of the involuntary transfer or discharge.

  6. In the case of immediate severe threats to the health and safety of others, the facility may utilize an abbreviated involuntary discharge procedure.”

In most cases, the ESRD regulation above along with the American Medical Association’s Principles of Medical Ethics Section 1.1.5, effectively eliminates transfer or discharge as a consequence. Other consequences for challenging behaviors that dialysis clinics have used include shortening treatments, changing shift days or times, and requiring home patients to change from home to in-center dialysis. When these actions are taken without assessing contributing factors, it can lead to fractured patient-staff relationships, greater miscommunication, and worse outcomes.

Recently, several social workers have posted on the CNSW listserv that they, like me, believe behavioral contracts are not worth the paper they were written on. Some have suggested more patient-centered or less paternalistic punitive approaches to assuring both staff and patients follow rules. They believe developing an agreement that addresses goals and responsibilities helps make communication effective, respectful behavior possible, and desired outcomes achievable.

ESRD Networks have staff who are charged with helping to address challenging situations. Some ESRD Networks have posted documents including:

Here’s an example of an agreement that dialysis clinics could use with new dialysis patients. We welcome your thoughts about ways to improve this draft, including when is the best time to present it to a patient and how to position it to get the most buy-in.

Download a copy of this agreement.

Comments

  • Amy Staples

    Nov 10, 9:16 AM

    After reading this I can easily and safely say when I received an IVD from my HHD Clinic in July of 2010 it was basically illegal or beyond the accepted/approved reasons. Furthermore when I approached the ESRD Network they preferred to support and back the clinic and offered me no assistance. It was only a year or so later that I learned that the clinics are required to communicate with patient in an effort to "resolve" any concerns, which they did not do. Also the ESRD Network is supposed to be contacted before the IVD is set in motion in order for the Network to intervene in behalf of the patients' interest and assist in resolution *prior* to the IVD being implemented. This also was never done. When I contacted the state survey department and filed a complaint and requested an investigation she said she could find absolutely nothing in any of my records to indicate any negative behavior on my part. Her actual words were "gosh you seemed like such a model patient and then wham you're gone, what happened? There is nothing in the records to indicate any problems." When I attempted to file a suit against the clinic it became impossible because so much "documentation" was left out or removed or incorrect. None of my hospitalizations, surgeries, procedures, changes of medications, episodes of sepsis etc were noted in any of my medical records for the clinic. Wouldn't that seem somewhat suspicious? The experience has taught me a great deal about patients' rights and responsibilities and about clinics' rights and responsibilities and what they actually do.

    On my very last episode of sepsis, during the treatment wherein the nurse made the mistake of not following clean protocol, I complained during the treatment to the head nurse and FA, telling them I was highly suspect I would end up with Sepsis. This happened on a Monday and by Tuesday evening I'd spiked a 103 fever, fever chills, nausea, vomiting. Wed morning I called the clinic and spoke to the charge nurse telling her I wouldn't be at clinic for treatment as I was heading to the Hospital. Later when I requested my records they charted the day I'd called about going to the hospital that I had failed to report for treatment and that I had been educated on the importance of not missing treatments and the hazard it presented for my health. It was also charted that they spent at least 30 minutes being educated on the proper way to handle a catheter, and that as a patient I should never touch it and always have a nurse handle it. Funny right? I didn't even show up for any treatments at that clinic after that Monday and they never spoke to me about missing treatments or handling my catheter. How could they? I never had any contact with them except to inform them I was going to the hospital. As a consequence I ended up having 11 procedures done, in hospital for nearly 3 weeks, 4 transfusions and 7 catheters later I finally was able to get a bovine graft. How can any patient ever trust a clinic to chart the truth after incidents like this? Thank you so much for this. Blessings

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    • Beth Witten

      Nov 10, 3:18 PM

      Hi Amy,
      It's upsetting to me that from what you say your former dialysis clinic was not in compliance with the ESRD regulations. The ESRD Network should have thoroughly investigated your complaint. If the state agency surveyor investigated your complaint and found no evidence that your behavior warranted involuntary discharge and the clinic did not follow the steps to discharge you, I hope the surveyor cited the clinic. If so, the clinic would have been required to submit a plan of correction that the state would have had to approve. Hopefully having to do that would lead the clinic to act differently, which could protect someone else from facing the same fate as you. I don't know if the state could have required the clinic to readmit you, but I suspect that with all that happened to you, you wouldn't have wanted to return to that clinic.

      So far as missing medical records, the only way to assure that your records are complete is to periodically ask to review them and keep copies. You have a right to inspect, review, and request a copy of your medical records. You also have the right to request a correction in your medical record if you find any errors. Here's the link to the HHS website describing this right. https://www.hhs.gov/hipaa/for-individuals/medical-records/index.html

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  • Carla Hagood

    Nov 9, 9:38 PM

    I've put much thought into patient motivation, and the largest part of motivation is involvement. The patient, which I believe should be called client in this case (who needs constant reminder of condition with the term patient?). The client should immediately be put in a position where they feel that they are holding the reigns. We already are powerless over what our bodies are doing, reinstate what dignity can be handed back to a person and make them the head of the medical team that is treating them. Give them importance and they just may act with integrity towards their own health and those helping them.

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    • Beth Witten

      Nov 10, 3:44 PM

      I agree that the person with the health condition should be the leader of the team and as actively involved in care planning as he/she desires. Don Berwick, former acting administrator of CMS, wrote an article in 2009 for Health Affairs called "What 'Patient-Centered' Should Mean: Confessions of an Extremist." In it he listed 3 maxims that I wish all healthcare providers would follow: (1) “The needs of the patient come first.”(2) “Nothing about me without me.”(3) “Every patient is the only patient.” http://www.healthaffairs.org/doi/full/10.1377/hlthaff.28.4.w555

      You can see a short video clip of Don Berwick expressing feelings that I suspect many of you (and the rest of us) have about being treated by a system in which care is far from patient-centered. I believe he was speaking to healthcare professionals so my hope is that things are changing. https://www.youtube.com/watch?v=5cpjsT1jd_s

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  • Katherine Soto

    Nov 9, 9:22 PM

    I think these are pretty much covered in patient's rights and responsibilities and all of the paperwork signed by patients when beginning dialysis. A problem needs to be addressed specifically with a patient. It should be addressed with a specific goal for the patient to try to accomplish, specific things staff will do, and specific things the patient will do. Otherwise it does not address the specific problem within clinics.

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    • Beth Witten

      Nov 10, 3:56 PM

      You're right that it's important that with any agreement there is a mutually agreeable goal and each understands his/her rights and responsibilities. An agreement (or contract) should not be one-sided and having a clinic set a goal for a patient without that patient's agreement is a goal that is unlikely to be achieved.

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