Home Dialyzors’ Thoughts About Involuntary Discharge

This blog post was made by Dori Schatell, MS, Executive Director, Medical Education Institute on January 19th, 2017.
Home Dialyzors’ Thoughts About Involuntary Discharge

Imagine that you need a medical treatment several times each week to keep you alive—but that treatment could be withdrawn at any time at the whim of your care providers with little notice, leaving you to scramble for an alternative provider. Despite CMS patient protections, this scenario still happens about 1,000 times a year to American dialyzors, notes a recent blog post by Dr. Robert Allen Bear on the KevinMD website, which is terrifying. And, home dialyzors report feeling especially threatened because of their active involvement in their care.

Involuntary discharge from dialysis—a life-sustaining treatment—is a uniquely American phenomenon. It is not reported with any frequency in other first-world countries,”said Dr. Bear, who went on to note that, “Each of us has a role to play in addressing this important health care issue.”

Among the risk factors he noted were:

  1. Lack of health insurance

  2. Presence of mental health disorders

  3. Violence

  4. Disruption

Only numbers 1 and 3, lack of payment and threats of/use of violence, are CMS-sanctioned, legitimate reasons for involuntary discharge (along with clinic closure and not being able to provide the medical care someone needs). Even if these factors are present, 30-day notice should be given after a full interdisciplinary team reassessment to try to resolve the problem. A plan is also supposed to be made to ensure that the patient can receive regular dialysis care elsewhere. The Interpretive Guidance to the ESRD Conditions for Coverage states that the only legitimate reason for abbreviated (<30-days) discharge without notice is if the patient presents an “immediate severe threat of physical harm”—and an angry outburst or verbal abuse does not rise to this level. Patients cannot be discharged for failing to meet facility-set goals for clinical outcomes or for missing or shortening their treatments. However, despite assurances from dialysis providers to CMS that patients would not be blocked from sister clinics, some patients do end up blackballed when all or most clinics in an area are owned by one company, as a ban from one clinic can end up being a ban from all of them. Being limited to occasional, intermittent dialysis in an emergency room tends to be fatal.

CMS surveyors do pay attention to involuntary discharges. The ESRD Core Survey process in the ESRD Core Survey Field Manual states: “When one of the criteria for consideration of involuntary transfer/discharge listed at V766 is identified, the facility and ESRD Network are fully expected to exhaust all resources to address the problems and prevent the patient's transfer or discharge. If there is no resolution, the facility must make meaningful attempts to transfer that patient's care to another outpatient dialysis facility without regard to facility ownership. The only exception to this expectation is in the case of an immediate severe threat to the health and safety of others when the facility may utilize an abbreviated involuntary discharge procedure.”

Readers, consider this post to be my contribution to raising awareness of this vital issue. A lengthy discussion of Dr. Bear’s article among some home dialyzors I know was very troubling to me as someone who has spent many years sorting out how best to engage people with kidney disease in active self-management—which is, after all, the job (wanted or not) of someone with any chronic disease. While Dr. Bear invoked creating an atmosphere of patient engagement and shared decision-making as one solution to the problem of involuntary discharge (ID), according to home dialyzors, the very skill set we want to develop—treatment knowledge and self-advocacy—resulted in retaliation and concerns about involuntary discharge.

Here were some of their comments:

  • “Dialysis is the only area of healthcare where patients have to live with the threat of being labeled non-compliant if they speak up about the quality of care. Not only the threat of being discharged but also the threat of being removed from transplant lists...sometimes based on information and reports from techs...not even an MD. No one should be afraid to speak up for their best interests. Dialysis patients often are.‬”

  • “No matter how much they like you, or how much of a model patient you are, if you challenge them in any way they don't like...look out. That word "compliance" gets to me. I had to sign a "patients rights and responsibilities" document last clinic visit. The tech said it was because they had some people who were only doing two treatments per week. I said, ‘don't patients have the right to refuse a treatment?’ We're talking home treatments here...so no problem for the center schedule, etc. What other form of treatment do you have to worry about if you miss a dose or miss an appointment? I just keep my head down, pick and choose my battles and try not to ruffle feathers.‬”

  • “ID can happen when there are personality clashes, or for me when I do in-center they think that when I ask them to please change their gloves or wash their hands or turn off the UF when I'm cramping etc., it comes across as aggressive not proactive. Then they snap back with passive aggressive retaliation like letting the machine sit alarming for up to 15 minutes (and the pump is stopped), or taking my blood pressure every minute for 15 minutes etc.”

  • When I insisted that my cannulation site be properly prepared before being cannulated they would make comments, roll their eyes, huff, etc.‬”

  • The more proactive, educated and informed a patient is the more dangerous a position that patient is in. We must exercise caution, due diligence and use whatever tools at hand to safeguard each one of us from ID. It happens. The mentally ill, the combative, the frustrated, the informed, educated etc are *all* at risk. If it can happen to one, it can happen to all. This is where we must all stand up for one another.”

  • “A goodly portion of those who get involuntary discharges, get them not because of mental illness, violent, disruptive, lack of insurance but because the patient (consumer) has chosen to become informed, educated and advocate for themselves in their personal care while on dialysis. For too long staff at a clinic (nurses, facility administrators, social workers, dietitians, physicians, techs etc) have the mentality of they are ‘parents’ and the patients (consumers) are children to be chided and we are to do nothing but become obedient to every and *any* demand. When one person speaks up, many consider that being ‘disruptive’ and ‘off with their head’ (sorry I couldn't resist I just watched Alice in Wonderland).”

  • I had a situation early on in my home hemo journey that ended up with me filing a grievance per clinic policy. Do you know who they assigned to investigate my grievance? One of the people the grievance was against. That's when I changed clinics and have kept my head down ever since.”

A strategy some dialysis providers use to circumvent the CMS rules is to have a nephrologist “fire” the patient, which effectively releases him or her from the care of a particular clinic. Since physicians can essentially fire any patient for any reason at any time, this approach effectively circumvents the intent of the regulations—and is largely incontestable. (NOTE: The American Medical Association’s Principles of Medical Ethics does not preclude “terminating a patient-physician relationship, or even provide any guidance about when this is or is not appropriate. Rather, doctors are advised to give advance notice and facilitate transfer of care “when appropriate.” When would this not be appropriate?)

Thus, while some states may protect patients against abandonment, the threat of loss of care at any time is quite real, and, not surprisingly, makes an already-vulnerable group feel even more at risk:

  • Can you think of any other illness where they refuse to treat you? Chemo, diabetes? You always have the right to change doctors in any health arena, and doctors do have the right to discharge you as patients, but in a life threatening arena? Dialysis and the dehumanizing, demoralizing, and condescending way most centers treat their patients is like no other illness!‬”

  • I received an involuntary discharge when I'd been with a home hemo clinic 8 years. Any nurse, clinic, staff member can chart/write whatever they choose against any patient and it’s taken as gospel truth without question.‬”

  • I am a perfect patient - labs are always in range, do my treatments, never call them, show up for appts, unless I have told them that I was travelling (always ahead of time AND offer to reschedule at their convenience). And still, it can happen. I am no longer complacent about this, nor do I feel ‘safe’.‬

  • “If they change the protocols, rules etc. and don't tell the patients they ‘chart’ it as non-compliant, a word which should never be used in healthcare. Make sure you do your own charting. I keep a notebook and notate every time I have contact with anyone from my clinic, names, dates, times, what was discussed etc. This helps save me as a patient from undue retaliation.

A Forum of ESRD Networks meeting some years back included a session on “Difficult Patients.” Expecting to hear the presenter taking a staff-centric approach, I was pleasantly surprised to hear a patient-centered one instead, urging attendees to listen and understand why people missed treatments, gained too much water weight, etc. A heartbreaking story was shared of a man who was discharged from his clinic and blackballed from all surrounding ones for leaving all of his treatments early—for a reason that turned out to be because he had to meet his young daughters at the bus stop. All this man would have needed was a change in shift time or a home dialysis option that allowed him to control his schedule. Instead, he died. I never forgot him.

As a community, we need to celebrate patients learning enough to take responsibility for their care and ask questions—not punish it. Even full on “non-compliance” (compliance is a dirty word that should never be used in any chronic disease setting) is not a CMS-approved reason for involuntary discharge. Neither are active involvement in care or challenging the staff. Until we truly can move to a patient-centered culture, people on dialysis will remain at risk for involuntary discharge for behaviors any clinician would do for him or herself.

Comments

  • Dar San

    Mar 14, 3:37 AM

    This is all true.. my husband and I recently relocated and after 3 months in our new home he was discharged from a facility in SC. He has been a PD patient for 2 years, who never had an infection or hospital stay. Ultimately, his crime was that he worked! He had a mandatory work and out-of-state travel schedule each week and his days off were also the days the physician wasn't scheduled to come to the facility, so he was unable to keep all of his appointments and was not given any option to reschedule. So 3 months after entering this new facility, and without warning the physician handed him a life sentence and involuntarily discharged him, effective IMMEDIATELY! He was not combative or violent, but they were still allowed to terminate his care, cancel his supply order and leave him to die without ANY notice. We have excellent insurance coverage, however, because of the Non-compliance label, on his file no other facility will accept him. I have called the facility's corporate office, ESRD NETWORK, and the State Survey Dept. and the ALL said since the physician discharged him, there was nothing they could do. I have called every facility within a hundred mile radius and they all have the same advice... "when he is close to death, take him to the ER."

    Where are his patients rights?

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    • Beth Witten

      Mar 16, 2:54 PM

      Where was your husband's PD clinic located and what's its name?

      When trying to locate another clinic, did you check the "Find a clinic" database for PD clinics in your area?

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    • Beth Witten

      Mar 15, 10:45 AM

      I agree with everything that Dori suggested. If the facts are as presented, this is unacceptable!

      I suggest that when requesting removal of the "noncompliant" label in your husband's medical record and/or meeting with an attorney about this situation, I'd point out that the ESRD regulations require that when any dialysis patient is at risk of involuntary discharge, the interdisciplinary team (MD, RN, dietitian, social worker) must perform a comprehensive reassessment of the patient and make a demonstrated effort to address the problem in a mutually beneficial way. Some things the physician and clinic could have done include:
      - When your husband missed his first clinic appointment, did he report why or if not did the dialysis team try to identify why he missed, learn it was work-related, and suggest rescheduling his clinic visit to accommodate his work and/or help to advocate with his employer for schedule flexibility on clinic days as a workplace accommodation under the Americans with Disabilities Act? People on dialysis are protected by that law and employers with 15 or more employees are required to accommodate requests by people with disabilities unless the request is too burdensome. A slight change in schedule should not be considered burdensome and might have resolved this whole problem.
      - Did the clinic have his lab results to review? If not, they could have asked if he could draw his blood to send to a lab or have his blood drawn elsewhere if he couldn't get to the clinic during normal work hours?
      - Did his nephrologist offer to see your husband in the office instead of at the dialysis clinic? The ESRD regulations allow patients like your husband to see their physicians in their office as long as the physician shares copies of the report from that visit with the dialysis clinic.
      - Did the RN, dietitian and social worker offer to communicate with him in other ways besides seeing him in person? The ESRD regulations allow staff to communicate by phone, email, or mail when it's not possible to see someone in person.
      - Was your husband included in developing his plan of care? The dialysis regulations require dialysis facilities to include patients in this process as much as they desire. The team is supposed to develop an individualized treatment plan that meets patients' needs. It appears that your husband's plan of care did not address his need/desire to work or the work schedule mandated by his employer.
      - Did the clinic staff ask any other doctor with privileges at the clinic if they would accept your husband as a patient so he wouldn't have to leave the clinic?
      - Did the clinic staff (often the social worker) work with the ESRD Network to help your husband find another dialysis clinic that would accept him and explain that work was the reason why he missed clinic appointments?

      The ESRD Network is not only responsible for accepting and reviewing patient grievances, but also for making efforts to help patients locate a dialysis facility that will treat them. Did the ESRD Network do anything to help your husband find another clinic?

      The State Survey Agency receives patient grievances and reviews them for compliance with the ESRD regulations. There are only 4 allowed reasons for a patient to be involuntarily discharged. I suspect that when the doctor terminated the relationship with your husband, the clinic used the excuse that it was unable to meet the patient's medical needs because there was no physician to write orders.

      Although physicians (and patients) have the right to terminate the physician-patient relationship, physicians should provide patients they "fire" with options for other treatment settings and give the patient time to locate a place to get ongoing care. Unless a patient is violent or threatening violence (immediate discharge is allowed in this case), the ESRD regulations require facilities to provide to the patient and ESRD Network a 30-day written notice of discharge and help to place the patient at another clinic. It doesn't sound like this happened. A hospital ER should not be the only option offered.

      I believe ESRD Networks and State Survey Agencies should review these physician termination cases more fully and ask for documentation that the nephrologist assisted the patient in finding another clinic. If not, I'd like to see ESRD Networks and State Survey Agencies report the physician to state medical board for investigation of patient abandonment since patients on dialysis need ongoing care to survive.

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    • Dori

      Mar 15, 12:25 AM

      This is a HORRIBLE story, reflecting the polar opposite of "person-centered care," and I am appalled and saddened to hear it. Since the usual approaches--the ESRD Network, etc., have not worked, here are some thoughts that are perhaps a bit more outside the box:
      • Is it possible to set up a meeting with his nephrologist and ask him to remove the word "non-compliant" from your husband's file? If he doesn't want to care for your husband, fine, but that word could cost a life, and a doctor's Hippocratic oath is to "first, do no harm." This may be worth a try. He may not realize that his actions have made it impossible for your husband to find care elsewhere.
      • Find a lawyer. It appears that this doctor is in violation of the law against patient abandonment without notice (http://www.scalc.net/decisions.aspx?q=4&id=11115). The Dialysis Advocates group may be able to help--they have lawyers working with them on cases like your husband's. http://dialysisadvocates.com.
      • Contact the local press. Perhaps this doctor will not appreciate an article in the newspaper or the TV consumer alert saying that he abandoned your husband and "poisoned the well" by calling him noncompliant--effectively leaving him to die--and would remove the label so your husband can get care elsewhere.
      • Call your Congressman's office. Sometimes they can find ways to intervene when a taxpaying constituent needs help. Ask to talk to the health staffer or the Congressperson (or Senator!) directly, and say that this situation is an emergency.
      • Call other nephrologists to get your husband seen. If the doctor will accept him as a patient, the clinic will, too.

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  • neal ownsby

    Feb 21, 3:52 PM

    However patients can accuse physicians of abandonment if a physician doesn't provide sufficient notice and help to find a qualified replacement. This Dr. has blackballed me and no other doctors or clinics will take us, she did not try to help at all. I told her we wanted to change dr. that I did not agree with treatment, she was having me take off more than that machine should and she would get up with cramps, and a lot of little things ..

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    • Beth Witten

      Feb 22, 7:51 AM

      Nowadays ESRD surveyors look at whether patients have more than 13 ml/kg/hr removed during dialysis, which can be unsafe. The Home Dialysis Central site has a calculator for this. At the same time, it's important that patients not get fluid overloaded, which can be dangerous too. If more fluid needs to be removed, an extra treatment can be done and the staff can work with the patient to be sure he/she knows how to limit fluids to a safe amount.

      If the doctor or dialysis clinic blackballed you, I would definitely file a complaint with the ESRD Network and state survey agency.

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  • neal ownsby

    Feb 19, 8:12 AM

    We have been on home dialysis from about 1 year and was doing great , we won each time they had an award monthly for hitting our goals.Over a month ago Dr. quit us and then the dialysis clinic in Lenoir city quit us ,,so when we try all kidney Drs. And clinic they all said no to treatment and will not give us an answer to why they will not take us…THIS IS MURDER BY DRS. AND CLINIC…I HAVE OWNED A BUSINESS AND PAID TAXS 30 YRS. And these Drs. Take an oath for help people,, but just not so ..When one quits you then no one else will take us …There is no one policing  these Drs.  This can not happen in other country’s ..This same Dr. told my wife if she did not start dialysis she would die a slow painful death,,,, then almost after 1 yr that same Dr. took her dialysis machine from us. I am watching her sick daily and dying   everyday... We are good people that did not think you could not speak your mind without worrying about this very thing happening and they say it happens over 1000 times a year ,most just go home and die but I love my wife and will fight for her life this kidney Dr. take and oath to heal people but because we disagree with her like so kind of power trip, , no doctors or clinics will take us.. It is not right one day we are happy at home doing home Hemodialysis ,then disagree with doctor about treatment and when I told her I wanted to change doctors,,They should not have that much  power to play GOD.. We  need help with this from anyone who can

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    • Beth Witten

      Feb 21, 2:03 PM

      You didn't describe what the disagreement about treatment related to that led the doctor to "fire" your wife a month ago. Doctors and patients are allowed to terminate the physician-patient relationship. However patients can accuse physicians of abandonment if a physician doesn't provide sufficient notice and help to find a qualified replacement. http://www.nolo.com/legal-encyclopedia/what-patient-abandonment.html.

      It sounds like didn't happen. Therefore, you might want to consult with an attorney explaining exactly what happened leading up to the termination to learn if the physician's action could be considered abandonment and/or malpractice.

      One of the loopholes in the federal regulations is that even though there are only 4 allowed reasons for a dialysis facility to terminate a patient, when a patient has no doctor to write orders, the facility can say that it can't meet the patient's medical needs because it doesn't have physician orders for dialysis. That said, when a patient is at risk of involuntary discharge, dialysis facilities are supposed to have their staff do a comprehensive interdisciplinary team reassessment to identify and attempt to resolve the problem that is putting the patient at risk. For example, if there are other physicians who treat patients at the facility, they should be asked to accept the patient so the patient can stay at the same facility. If no other physician at the facility is willing to accept the patient, dialysis facilities should reach out to ESRD Networks to seek their help in finding another facility for an at-risk patient. Patients who are involuntarily discharged from a dialysis facility can and should contact the state survey agency to report the discharge. The ESRD state survey agency is supposed to investigate such complaints and may conduct a survey of the facility to see if the facility is out of compliance with ANY federal (or state if they exist) regulations, not just those related to the involuntary discharge. Use this link, insert your state and look in the drop-down menu for ESRD State Survey Agency. https://www.medicare.gov/Contacts/

      Have you looked in the Find a clinic database on Home Dialysis Central to make sure you're contacting all the clinics that off home dialysis within a driving distance that acceptable to you? http://www.homedialysis.org/clinics/search

      Finally, although it's not the best way to stay healthy, until this problem can be resolved, you wife should be able to get dialysis at a hospital when her labs indicate she needs it.

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  • Susan Turton-Weeks

    Feb 2, 2:19 PM

    Hello, I am and ex dialysis nurse from many years ago and I really feel for the plight of some of the patients. One aspect of dialysis that I have never understood is why dialysis units do not offer night dialysis? Whose convenience are they in business? If you wish to work and do not for one reason or another want to do home hemo or PD then night dialysis should be available. When you have a dialysis unit that functions 3 days a week, this is not utilizing resources!

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    • Dori

      Feb 2, 3:24 PM

      I agree, Susan! Nighttime in-center shifts are definitely more work-friendly. Some clinics offer them, and some offer in-center nocturnal HD. But, not as many as should.

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  • Bill Peckham

    Jan 21, 11:17 AM

    I think you missed one scenario that goes under the radar. If a patient is in the hospital or traveling for, I believe over 30 days, a unit does not have to readmit them, and there is no record this denial.

    We dialyzors are in the position that we must rely on other people's beneficence. I think there should be a way to become an emancipated dialyzor.

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    • Dori

      Jan 23, 3:26 PM

      Hi Bill--you are absolutely right. I did miss that scenario, because I didn't remember that this could happen. That has to be scary to folks who want to take an RV and tour the country, or visit another state for more than 30 days.

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  • Nieltje Gedney

    Jan 20, 11:03 AM

    Thank you Dori! We need to keep shouting this from the roof tops! Someday they will hear us. One thing I encourage all ESRD patients to do is request a copy of your medical records ANNUALLY. Keeps you and them on their toes! Another is to review your bills, and contest any and all "irregular" charges and payments to CMS. We, the patients, must remember that we are the consumers, and act accordingly. If you purchased an inferior product or service anywhere else, you would demand a refund! Dialysis is NO different.

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