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The Provocative (and Non-Compliant) ESRD Patient

Course Authors

Eli A. Friedman, M.D.

Release Date: 04/28/2002

 
Learning Objectives

Upon completion of this Cyberounds®, you should be able to:

  • Recognize the tensions induced by patient resistance to a therapeutic regimen

  • Identify potentially correctable stressors

  • Gain an enhanced perspective of what patient non-compliance and antagonism represents and how management may be attempted.

 

Introduction

Physicians learn early in their careers how to cope with reluctant, uninformed and frightened patients. Active resistance and combative behavior, by contrast, is unsettling, at the least, and sometimes provokes despair, anger and hostility in care givers. For patients with end-stage renal disease (ESRD), creating an atmosphere of antagonism and conflict that transforms therapy into conflict that may defeat the physician's primary obligation to beneficence. Faced with a belligerent, threatening and law-suit-minded patient who frustrates efforts to proffer ordinary treatment, the sometimes bewildered nephrologist seeks to break the patient-physician bond by any legitimate means. Consider the following example:

Case Presentation

Mr. J.W., an unemployed 27-year-old cocaine abuser, developed renal failure attributed to a prior history of intravenous heroin use, which often included the sharing of needles and syringes. Noted to have antibody titers to both hepatitis C and HIV, distinction between heroin-associated nephropathy, HIV-associated nephropathy and membranoproliferative nephropathy was not possible, as the patient declined renal biopsy.

Excluded from a renal transplant because of active HIV infection, the patient was offered a program of maintenance hemodialysis. Refusal to discontinue heroin use was associated with successive destruction over seven weeks of three arteriovenous grafts inserted for hemodialysis access. The vascular surgeon declined surgery for a fourth graft and the patient was sustained by thrice weekly femoral vein to vein hemodialysis. Arriving more than one hour late for each scheduled dialysis, the patient insulted the nursing staff, vowing to inflict personal violence should he not be started on dialysis promptly.

By the second week of femoral dialysis, each session was transformed into a battle in which the patient cursed, threw dressings and catheters at the staff, and frightened adjacent patients who requested relocation. Attempted discussions by the social worker, head nurse, chief nephrologist and hospital security director were refused by the patient who proclaimed, "I know my rights."

During the third week of femoral dialysis, the patient demanded shortened treatments, twice disconnecting his blood tubing, causing large hemorrhage. When further attempts to "reason" with the patient were unsuccessful, the responsible nephrologist sent a registered letter stating that the patient would no longer, one month later, be admitted to the ambulatory dialysis facility and so instructed the hospital security service.

Assessing the Disruptive Patient

Key issues in the above case are presented in Table I.

Table I. Issues in Assessing Disruptive Patients.

  1. Does the patient realize the genesis of his kidney failure?
  2. Have goals and objectives of treatment program been explained in terms comprehensible to the patient?
  3. Does the patient have the necessary intellect and motor skills to comply with the treatment program?
  4. Are there family members, partners, clergy, or other support figures who might assist in reasoning with the patient?
  5. Does the patient have a psychiatric disorder that prevents participation in and compliance with the treatment regimen?
  6. Is the patient gaining benefits (disability, family attention) from the non-compliant behavior?

Dialytic therapy - like the iron lung of the 1940s - presents a unique ethical dilemma when stopping treatment is contemplated. Deprived of renal function, the uremic individual dies. When the patient opts to forego further life extension, subsequent death becomes a news story, especially in the case of celebrities like James Michener.(1) Critiques aver that any physician mandating discontinuance of dialysis is countenancing a Kevorkian-like termination of life. Proposing termination of a physician's responsibility for a dialysis patient is a circumstance that may elicit national notoriety, as was the case in California when Jeanie Joshua was refused dialysis by nephrologists in Santa Barbara and Ventura Counties.(2)

Court decisions in several states concur that while physicians may not be forced to accept or continue treatment for a specific patient, some means must be devised to continue life-sustaining therapies, such as dialysis, even for abusive, non-compliant and non-paying patients. Dr. John Bower, Chief, Division of Nephrology and Professor of Medicine, University of Mississippi Medical Center, and the subject of a lawsuit in Mississippi that reached the Circuit Court of Appeals in New Orleans, successfully argued that a physician and/or private dialysis facility may refuse treatment. To compel treatment by Dr. Bower, the Court ruled, would violate the XIIIth Amendment to the Constitution of the United States, which prohibited slavery, for it would constitute, for Dr. Bower, involuntary servitude.(3)

A helpful overview of ethical issues generated, when nephrologists reject their patients, is contained in Kjellstrand's doctoral thesis.(4) Nephrologists familiar with everyday intermittent non-compliance with a dialysis program (excess weight gain, omitting medications) become bewildered and angry when dealing with an abusive and threatening patient. Adding an overlay of hospital administrators, patient advocates, disability representatives, ethicists and attorneys creates an enervating and no-win confrontation that may burden the renal team for weeks. Sirmon has well outlined the ethical issues in patient selection for dialysis,(5) while Sussman and Spinal focus specifically on the abusive dialysis patient concluding that for competent individuals who "behave in dangerous ways...suspension of dialysis would, in our judgment, have been ethically defensible."(6)

ESRD Network 5, guided by Alvin H. Moss, prepared an excellent manual, Working with Non-compliant and Abusive Patients.(7) After discussing the concepts listed in Table I, the manual points out the importance of staff training in strategies to manage difficult patients. Strategies found to help resolve conflicts underlying patient conflict are given in Table II.

Managing the difficult ESRD patient

Table 2. Discovering and Eliminating Reasons for Patient Non-Compliance.

  1. Remove "communication spoilers," such as criticizing, name-calling, moralizing, threatening, ordering and psychologic diagnosing.
  2. Employ "reflective listening," a technique to show that one has "heard" what the patient says.
  3. Deal directly with problem behaviors: small steps, involve the patient, build on patient's strengths, be clear on who is to do what when.
  4. Devise new approaches to "old problems," such as lateness and complaints.,
  5. Present the consequences of aberrant behavior to the patient in terms that are comprehensible.
  6. Construct a behavior contract that specifies what is to be done by patient and renal team.
  7. Know in advance how chronic anger will be managed.
  8. Prepare the staff for step-by-step coping with agitated and disruptive patients.
  9. Establish and publicize a grievance procedure.

Most of the nine points in Table 2 are self-evident when viewed before or after the fact of a patient-staff confrontation. Staff members unprepared for "incidents" may react in ways that inflame and accelerate the problem. There is no doubt that prior presentation of problem solving approaches may prevent and mute simple disagreements from growing into major problems.

For some patients, even the most empathetic approach may fail. Insults, threats and actual assaults need not be tolerated by the renal team. When reasoning misfires and the intensity of patient anger increases, the sequence outlined in Table 3 is the appropriate recourse. As remarked by the General Counsel for the American Medical Association, "The obligation to treat non-compliant patients should not be an absolute one."(8) On the other hand, Counsel warns: "Patients should not have to pay for their non-compliance with their lives." Thus, like Solomon approaching the two mothers claiming a baby, the patient must not be cut in half in order to restore peace to a dialysis unit.

When Reasoning Fails

Table 3. When Reasoning Fails and Dialysis Patient Abuse of Staff Continues.

  1. Inventory possible third party problem solvers (spouse, family, friend, clergy, others).
  2. Carefully document incidents and staff responses in the patient's chart.
  3. Involve the unit social worker and obtain psychiatric consultation if indicated.
  4. Report the growing problem to the unit or hospital "risk management" service.
  5. Advise the patient in writing by certified mail that a limit in toleration of the patient's action has been defined. Establish a date for compliance.
  6. Should the abusive behavior continue beyond the time limit, notify the patient of termination of services in writing by certified mail permitting sufficient time for the patient to seek andobtain alternative dialysis care (at least 30 days). Include in the notification a list of proximal dialysis units and the directors' phone numbers.

In the Bower and other cases, the court has determined that although an individual nephrologist may discharge an abusive or disruptive patient, providing the conditions noted in Table III are satisfied, every patient who arrives at an emergency unit in need of urgent dialysis must be treated. This means that, despite being dismissed by a hospital's dialysis unit, the patient in need of treatment (fluid overload, hyperkalemia) must be dialyzed upon appearance at that hospital's dialysis unit. Diligent application of the principles enumerated above will, in practice, minimize the number of times that actual discharge letters are required. In our inner city dialysis program, in which serious socioeconomic problems confound uremia therapy, only rarely have we had to carry our exasperation to the limit. Upon reflection, even these catastrophes in health care delivery were avoidable.


Footnotes

1Neumann ME. Novelist Michener dies after withdrawing from dialysis. Nephrol News Issues 1997;11:60-62.
2Reinhold R. When doctors shun difficult patients. New York Times National, November 14, 1988, P1.
3Bower JD. The issue: the role of the professional in the management of noncompliant or problem dialysis patients. 1995;Dialysis & Transplant 24:173,196.
4Kjellstrand CM. Giving life--giving death. Ethical problems of high-technology medicine. Acta Med Scand Suppl 1988;725:1-88. Published erratum appears in Acta Med Scand Suppl 1988;224(2):192.
5Sermon MD. The combative patient: ethical issues in patient selection for chronic dialysis. Seminars Dialysis 1996;9:56-60.
6Sussman B, Spinal A. Risky business: managing dangerous dialysis patients. Seminars Dialysis 1997;10:282-285.
7Working with noncompliant and abusive patients. Mid Atlantic Regional Coalition, Midlothian, Virginia 23113, January 1994.
8Orenlicher D. Denying treatment to the noncompliant patient. JAMA 1991;266:1579-1582.