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Imagine that you need a medical treatment several times each week to keep you alive—but that treatment could be withdrawn at any time at the whim of your care providers with little notice, leaving you to scramble for an alternative provider.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