Chronic kidney failure is a serious disease. When progression to end-stage renal disease (ESRD) occurs, dialysis is required to sustain life.
It is shocking, then, that in the United States, it is estimated that over 1,000 patients annually are involuntarily discharged from their dialysis clinics. Further, they are often “blackballed” from other local clinics. The consequences for such patients, predominately African-American, are dire. A patient may be unable to find a local clinic that will accept them, thereby being required to travel great distances to receive their thrice-weekly dialysis.
Some end up visiting hospital emergency departments, where they will receive only intermittent dialysis when in extremis; others die. This health care practice — the involuntary removal of substantial numbers of patients each year from the treatment that sustains their lives — is without parallel.
Provider organizations defend their actions thusly:
The patient has no insurance. This is a rare occurrence in a system in which most dialysis costs are paid by Medicare. And, in a just health care system, if a patient cannot pay, should this ever be a reason to terminate care?
The patient does not follow medical advice. In a health care era focused on patient-centered care, patient engagement, and joint decision-making, could this ever be a valid reason?
The patient has a mental health disorder. Should the presence of one serious chronic disease ever deprive a patient of life-preserving care for another chronic disease?
The patient is violent and is a risk to other patients and staff. In reality, reported incidences of serious violence perpetrated by dialysis patients are rare; most ‘violence’ is verbal, precipitated by personality conflict based on cultural differences, low health literacy, and poor communication. These are addressable issues.
The patient is disruptive. When this reason is explored, it often turns out that the patient has expressed quality-of-care concerns; labeling the patient as disruptive and involuntarily discharging him/her, is a form of retaliation. Patients understand the ability of dialysis centers to do this, and many describe feeling intimidated, captive and vulnerable.
All of the above is well-documented in the public domain. Investigative journalists have published exposés. Patients have told their stories on- line. Legal opinions and summaries of legal actions have been published. Physician associations have lamented the practice of involuntary discharge and have published voluntary guidelines intended to limit it. Bloggers have raged. Yet the practice continues, as does the human suffering it engenders.
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. In Canada, as just one example, it would be impossible to involuntarily discharge a dialysis patient from a treatment center. Accordingly, this phenomenon offers key insights into the American health care system and into the professional behavior of some of its practitioners, insights that are important at a time the system may be further privatized.
Why uniquely American? Over 80 percent of dialysis care in the U.S., care that costs Medicare over $35 billion annually, is provided by two for-profit public companies. Creation of shareholder value is the driving force of these companies. In fact, the CEO of one of these companies has proclaimed that “the business of [my company] is not about patients.” So short-cuts in dialysis staff training and supervision may add to the bottom line, but may also contribute to the phenomenon of involuntary discharge. And embedded in the CMS remuneration system are financial incentives beneficial to these companies that may explain why they allow the practice to continue.
What can be done? A number of opportunities exist that, taken advantage of, would result in meaningful change.
The accountability framework within which providers of dialysis care in the US operate requires strengthening. The Center for Medicare and Medicaid Services (CMS) funds a system of regional End-Stage Renal Disease (ESRD) Networks. Among the purposes of these organizations: Providing assistance to ESRD patients and providers; and, evaluating and resolving patient grievances. In the matter of involuntary discharge from dialysis, dialysis patient advocacy groups have compiled abundant documentation confirming that the ESRD Networks typically provide little meaningful patient support at a time of involuntary discharge. Meanwhile, CMS refuses to ensure that ESRD Networks are held accountable in meeting their prescribed responsibilities to patients. Curious.
The Affordable Care Act contains a Patients’ Bill of Rights. While helpful, it does not address all of the needs of dialysis patients. Each ESRD Network should ensure the existance of a functional Dialysis Patient Bill of Rights and Responsibilities.
The involuntary discharge of a patient is unlikely to occur in a dialysis clinic environment in which there is a commitment to elements of patient engagement such as patient education, improved communication between providers and patients, and shared decision-making. Scientific studies from Australia and Europe have demonstrated that it is possible to dramatically reduce workplace conflict by implementing educational programs for staff and patients. CMS is requiring each of its regional networks to develop patient engagement initiatives. This is encouraging, but will require time.
A complex network of relationships exists between CMS, the Regional ESRD Networks, provider organizations, and some not-for-profit kidney agencies. Stark examples of conflict-of-interest exist. Furthermore, within this network, patients are poorly represented, and, as a consequence, their interests by-passed. Dialysis industry relationships should be made more transparent, conflicts-of-interest eliminated and patient representation improved.
It is unlikely that most U.S. citizens are aware that each year, a significant number of patients — typically African-American, disadvantaged and vulnerable — are unilaterally discharged from the health centers that provide their life-preserving care. It is a strength of countries such as the U.S. that heightened public awareness of an issue often results in change. Howard Koh, from the U.S. Department of Health and Human Services, has emphasized this, saying: “Advocacy is the engine for change, and the beauty of it is that it can begin with just one person.” Exactly. Each of us has a role to play in addressing this important health care issue.
Robert Allan Bear is a nephrologist.
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