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Imagine that you need a medical treatment several times each week to keep you alive—but that treatment could be withdrawn at any time at the whim of your care providers with little notice, leaving you to scramble for an alternative provider.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:
Lack of health insurance
Presence of mental health disorders
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.