Advances in Chronic Kidney Disease
Volume 12, Issue 1 , Pages 107-112, January 2005

The involuntarily discharged dialysis patient: Conflict (of interest) with providers

  • Mark E. Williams

      Affiliations

    • Division of Nephrology, Beth Israel Deaconess Medical Center, Boston, MA, USA
    • Corresponding Author InformationAddress correspondence to Mark E. Williams, MD, FACP, Renal Unit, Joslin Diabetes Center, 1 Joslin Place, Boston, MA 02215
    • ,
  • Jenny Kitsen

      Affiliations

    • ESRD Network of New England, Boston, MA, USA

Article Outline

 

As the following case exemplifies, the involuntary discharge of an end-stage renal disease (ESRD) patient from the dialysis facility can represent a state of protracted conflict between the patient and the nephrology staff/providers. With few workable solutions, such conflicts consume resources far out of proportion to the number of cases and are of growing interest to the dialysis community.

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Case presentation 

A 36-year-old male with a history of ESRD secondary to rhabdomyolysis, on maintenance hemodialysis for 7 years, presented to the Emergency Room with chest pain and lightheadedness after using free-based cocaine the previous night. The patient had a history of polysubstance abuse, primarily cocaine, which was complicated by cocaine-induced coronary spasm. Other medical problems included depression with a history of suicidal ideation, 2 attempted suicides (1 by intentional drug overdose and 1 by attempted laceration of his arteriovenous fistula), seizure disorder, hypertension, community-acquired pneumonia, congestive heart failure with absence of coronary occlusive disease on coronary arteriography, gastrointestinal bleeding, pancreatitis, and retroperitoneal lymphadenopathy. Medications included aspirin, lisinopril, nifedipine, clonidine patch, calcium carbonate, and sevelamer. He had no allergies. He was homeless and unemployed during the past 2 years and had recently moved out of a local homeless shelter.

On physical examination, the patient was mildly disheveled but in no acute distress and appeared to be his stated age. He was minimally cooperative. Examination was notable for a blood pressure of 157/96 mm Hg, severely depressed mood, and absence of fluid overload, pericardial friction rub, tremor, or asterixis. A patent left upper-extremity arteriovenous dialysis fistula was present. Laboratory values included creatine phosphokinase 1,229 IU/L, serum toxic screen negative, urine screen positive for cocaine, and ST-T wave elevation on electrocardiogram. The patient received aspirin, sublingual nitroglycerine, and lorazepam and was medically stabilized. Dialysis was provided. Psychiatry consultation revealed a depressed male with psychomotor slowing and feelings of hopelessness.

He was subsequently transferred to the psychiatry service for management of depression and chronic suicidality, for substance abuse treatment, and for assistance in vocational rehabilitation. The patient expressed anger “at humanity,” but denied suicidal or homicidal ideation or hallucinations. He was treated with venlafaxine and quetiapine, with amantadine added to reduce craving for cocaine. With depression improved, goals of the hospitalization became adequate substance abuse treatment while maintaining his chronic hemodialysis schedule. Case management options that were explored included nursing home placement (however, these facilities were reluctant to accept the patient because of his well-documented history of drug abuse); substance abuse programs (however, all programs refused the patient because hemodialysis scheduling would preclude attendance at regular therapy sessions, and the program would be responsible for providing transportation to and from dialysis); and, involuntary commitment to a prison-based substance abuse program, which could provide dialysis but would provide no significant substance abuse treatment, and the patient would be discharged after 30 days.

The hospital case management team consulted the ESRD Network of New England to assist in locating a dialysis facility for the patient. His previous dialysis facility refused to accept the patient because of his history of abusive and threatening behavior. Multiple other hospitals with ESRD programs and dialysis facilities also refused to accept the patient, citing the patient’s behavioral problems and staff/patient safety in their units. Further assistance was sought through the Department of Public Health and the Executive Office of Health and Human Services, without success.

The patient did not further require inpatient psychiatric care. He was, therefore, discharged from the hospital and advised to report back for medical admission 3 times a week to receive chronic dialysis therapy. The patient agreed to this plan. He was subsequently accepted into the hospital’s affiliated outpatient dialysis unit, conditional to nonabusive behavior and with the understanding that the hospital would attempt to assist the patient in obtaining Medicaid coverage. When a deadline was not met for completing the Medicaid process, the patient was discharged from the unit and advised to find dialysis care in a hospital setting. He has since been dialyzed as an outpatient in a hospital-based inpatient unit, with limited availability of social worker or nutritional input.

With the establishment of the end-stage renal disease Medicare program, dialysis facilities were instructed to evaluate the suitability of patients with chronic kidney disease for renal replacement therapy. However, no specific guidelines for defining appropriateness exist.1 As a result, the potential for conflict between patient and provider, between the patient and the primary care physician, or among the ESRD treatment team has existed, not only for initiation of renal replacement therapy, but for its continuation and termination. ESRD treatment now more than ever represents a complex system consisting of the patient, the family and other social supporters, the dialysis unit staff, dialysis care providers, and physicians and occurs in an increasingly stressful treatment environment. Furthermore, the relationship between the ESRD patient and their health-care providers is unique and bidirectional.2 Decisions about continued provision of dialysis, like those regarding initiation of therapy, should be made in the context of an ongoing doctor-patient relationship that is based upon mutual trust and respect.1

Guidance for such decisions could come from several sources (Table 1). In recent years, several patient-selection guidelines have been developed by medical specialty organizations, including a consensus conference convened by the National Kidney Foundation.3 In an analysis by Moss in 1995, uncooperative patients were listed as a group in which dialysis could be considered inappropriate.4 As the index patient case illustrates, management of the disruptive and involuntarily discharged patient is difficult. It encompasses a number of legal, social, and ethical issues ranging from noncompliance management, to behavior contracts and unit policy, to fair sharing of difficult patients among dialysis units. The disruptive patient commands resources out of proportion to the relatively small number of patients in a given area: disruptive behavior is self-destructive for the patient and problematic for the care-provider team, potentially affecting other patients, the staff, and clinic operations. The patient-provider partnership becomes conflicted. Dialysis units constrained by staffing shortages, overburdened social workers, and financial difficulties may find it easier to dismiss problem patients than pursue conflict resolution. The patient then becomes “dismissed” to the larger dialysis community.

Table 1. Guidance for Dealing with the Disruptive Patient
Practice guidelines
Unit policy
Company policy (corporate renal providers, crisis management team)
Local ESRD network/forum of networks

Abbreviation: ESRD, end-stage renal disease.

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Scope of the problem 

A recent survey indicated that almost 75% of respondents and about 33% of facilities had been faced with situations involving difficult or disruptive patients.5 Based on the perception in the ESRD community that the involuntary discharge of patients, largely because of noncompliance and threatening behavior, was increasing, a plenary session of the 2002 CMS/ESRD Networks annual meeting was organized on the topic. The need for more information was recognized and led to the “Involuntary Patient Discharge Survey 2002,” which was presented a year later.6 Twelve ESRD Networks, including 2,889 dialysis clinics with more than 200,000 patients (nearly 75% of all dialysis patients in the United Stated at the time) were surveyed. About 0.2% of patients had been involuntarily discharged, the survey showed, either immediately or 30 days after notification. Noncompliance and verbal threat were the most common precipitating causes for dismissal. Patients had been formally dismissed by the nephrologist, the facility, or both. Efforts to place the patient by contacting other facilities or providing a list of facilities to the patient occurred in nearly all cases. Of those with a known placement outcome (75% of the total), 50% had been placed in another ESRD facility, and 22% received dialysis in hospital emergency settings.

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Noncompliance 

Although verbal or physical abuse are of most concern to facility staff, the dominant problem of the involuntarily discharged patient is noncompliance. Examples of patient noncompliance, or the failure of the patient to conform to facility policies and procedures, include not appearing for prescribed treatments, refusing to be treated by a particular staff member, or interfering with the treatment of other patients.7 (Noncompliance may also apply to the actions or behaviors of the staff). This widely used term, now viewed less favorably, attributes behavior to the patient in rigidly following the instructions of the health-care providers.8 Although noncompliance classically refers to inability or unwillingness of the patient to follow physician orders, it is now recognized to be part of a spectrum from abusive behavior at one extreme to adherence to concordance at the other. Adherence emphasizes the ability of patient to make rational decisions about following medical orders, and concordance suggests an equal partnership between the patient and the health-care team. Across the spectrum, compliance is a multidimensional process9 that involves patient and provider. Actions of noncompliance may be patient related, treatment related, or related to the health-care provider.8

Hemodialysis patients are subject to severe lifestyle restrictions and face a sustained period of adherence to a complex regimen that includes multiple medications, fluid and food restrictions, and unfailing attendance at the dialysis unit. ESRD compliance may be divided into 3 treatment areas: medications, diet, and the dialysis prescription. A risk triangle may be formed consisting of factors that are patient related (male, low socioeconomic status, young age, lack of employment, low education level, alcohol and drug abuse), treatment related (multiple medications, complicated dosing schedule, frequent monitoring), and provider related (overstressed, untrained in conflict resolution, uncommitted to patient education, biased).

Prolonged noncompliance uncommonly culminates in involuntary discharge but is pervasive in milder forms. Compliance with a dialysis regimen requires an understanding of the benefit to be derived from it.10 In recent years, increasing attention has been given to the frequency and significance of noncompliance in the ESRD patient population. Before passing through the portal to renal replacement therapy, chronic kidney patients suffer from medical conditions, sometimes asymptomatic. Compliance with long-term treatment in patients with similar conditions is estimated to be as low as 50%.11 Up to 50% of patients on long-term medications may fail to take them as ordered.12 Factors identified in several studies to be associated with poor compliance include frequent treatments, low patient perception of the treatment benefit, poor communication with care providers, lack of family and social support, and younger age.11 Younger patients tend to feel physically better than older patients, have difficulty with the restrictions of ESRD, have difficulty coping with their underlying illness, lack disease management skills, and may have depression.13, 14, 15 Noncompliance in the ESRD patient may take the form of skipped or shortened treatments (which may occur for other reasons), failure to take medications, and failure to adhere to the prescribed diet.

Although the disruptive patient comprises a small percent of ESRD noncompliance, multiple subjective and objective measures have been used to quantify compliance.9 Depending on the definition used, the prevalence of noncompliance has been reported as varying from 2% to 86%.9, 16, 17 At least one-third of hemodialysis patients are likely to be noncompliant with some component of their complex treatment regimen.7

In an ESRD Network study, remediable barriers to the delivery of adequate hemodialysis were reviewed in single network for all treatment during a week in all 29 facilities. Multivariate analysis of the relationship between delivered dose of dialysis and patient characteristics identified Black race, male gender, and younger age as demographic factors associated with inadequate dose and treatment of time of dialysis.18

Recent attention has been given to the role of patient satisfaction with their care providers as an important variable affecting patient compliance.2 A study of chronic kidney patients showed that decreased satisfaction was associated with a higher number of symptoms attributed to medications; increased satisfaction with the attitude of the physician was related to outcomes that included adherence with medication, improved serum albumin concentration, and lower diastolic blood pressure.19 A recent interview study of 79 hemodialysis patients reported that attendance at dialysis sessions was related to patient satisfaction with their nephrologist.2

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Effect of compliance on outcomes 

For the disruptive patient at risk for involuntary discharge, compliance is not only a quality-of-life issue but also a length-of-life issue.2 Noncompliance with prescribed therapy has an impact on dialysis patient care and outcomes.7 Data reported from the USRDS, for example, showed that missing 1 or more treatments a month increases a patient’s risk of death by 25%, within the subsequent 2 years.20 Another study from the 1990s indicated that patients who missed only 10% of their treatments over a 3-year period of observation had a remarkable 39% increase in the risk of death.21 The effect of prescription noncompliance on mortality risk far exceeds the risk estimated by the reduction in Kt/V.22 Like missing treatments, shortening of treatments, also frequent in the disruptive patient, is also detrimental to patient survival; USRDS data show that shortening treatments more than 3 times a month results in a 20% increase in mortality risk.20

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Response of the dialysis community to the disruptive patient 

Response of the health-care team 

Simple strategies to improve the outcomes of the disruptive patient are shown in Table 2. The role of the provider in conflict that emerges with the increasingly noncompliant patient has been emphasized in recent years. Although the dialysis facilities may be facing a growing trend of disruptive situations involving patients,5 increasing attention has been paid recently to the basic patient-physician relationship. The disruptive patient exemplifies the problematic, special-needs case that the current ESRD system lacks resources to properly manage. A special project of the TransPacific ESRD Renal Network in 2003 examined the challenging dialysis patient more broadly and identified 4 contributing factors to termination of difficult patients: lack of staff skills, lack of proper definitions of patient behavior, inappropriate labeling of patients, and inconsistent implementation of facility safety policies.23 The project emphasized the aim of problem resolution rather than involuntary patient discharge. The project also recognized that a “zero tolerance policy” for abuse may be inconsistently applied within a facility, both in the involuntary discharge of patients and in the restricted admission of other patients.

Table 2. Strategies to Improve the Outcomes for Disruptive Patients
Simplify treatment regimen
Provide patient education and feedback
Establish partnership with patient
Implement behavioral contract

Identification and recognition of the noncompliant patient and awareness of risk factors for noncompliance can improve compliance and patient outcomes.24 Improvement is unlikely to occur when more extreme verbal and physical behavior downgrades the relationship with the provider. Whereas increased satisfaction with the physician and staff may produce improvements in patient compliance, a noncompliant or disruptive patient may produce responses from the health-care team (already stressed by staffing shortages, patients with increased medical acuity, and more complex dialysis technology) that further decrease satisfaction of the patient, unintentionally reducing compliance or behavior further.2 The unit social worker, required by the original Medicare conditions of ESRD coverage to make treatment recommendations based on the patient’s psychosocial needs, is instead assigned tasks related to finances, transportation, and patient admissions.25 As a result, patient dismissal may be more expedient than addressing the conflict.

Provider policies 

Hemodialysis units seldom have written policies regarding disruptive patients and are more likely to have a “zero tolerance” of abusive behavior notice posted. The predominant corporate challenge presented by the difficult patient is the question of involuntary discharge for noncompliance, after an appropriate case review. For example, facilities desiring to discharge a patient for noncompliance are required to report the case to clinical services for review. Policies for involuntary discharge and for management of the disruptive and abusive patient are invoked. In some areas, a policy of “corporate banning” may in effect prohibit the patient from relocating to any dialysis facility operated by the same company in which the involuntary discharge occurred.

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The ESRD network: the decreasing patient provider conflict project 

Funded by the Center for Medicare and Medicaid Services (CMS) and organized by the Forum of ESRD Networks, and operating through the ESRD Network of Texas, the Dialysis Patient Provider Conflict Project (DPPC) seeks to reduce conflict between the difficult patient and care providers.6 The task force recognizes 3 contributing behaviors: the patient, the facility, and others. The project grew out of a Renal Stakeholder Consensus Conference on Dialysis Patient Provider Conflict in late 2003. Workgroups are currently developing tools and resources for staff training and quality improvement. The DPPC program will be distributed to the ESRD networks in 2005 for regional training with dialysis facilities. The perspective of the task force is to move away from blaming the patient as the responsible person. Facility management is responsible for identifying staff and facility issues that contribute to conflict, such as inadequate communication skills, unresponsiveness of management to grievances, and lack of professionalism. Conflict reduction can improve performance and outcomes of the noncompliant and disruptive patient.

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Conclusion 

Conflicts of current interest within the dialysis community between patients and providers may involve a spectrum of situations, ranging from noncompliance to abusive behavior. Although ESRD providers treating Medicare patients should accept (and develop skills for managing the needs of) nonconforming patients, a Medicare program funded by the Federal Government also requires updated policies to protect patients and staff from disruptive and violent patients. Professional staff requires training to recognize and properly evaluate challenging patients. For the involuntarily discharged patient, repetitive dialysis in the emergency room setting lacks important resources needed for chronic care. The case presentation indicates that comprehensive regulations are needed for standards and procedures regarding the involuntarily discharged ESRD patient. In the absence of a sense of community sharing of responsibility for such patients, consideration should be given to a demonstration project in which solutions to the problem, including an adjustment of reimbursement, could be tested.

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References 

  1. Sirmon MD . The combative patient (Ethical issues in patient selection for chronic dialysis) . Semin Dial . 1996;9:56–60
  2. Kovac JA , Patel SS , Peterson RA , et al.   Patient satisfaction with care and behavorial compliance in end-stage renal disease patients treated with hemodialysis . Am J Kidney Dis . 2002;39:1236–1244
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 The analyses upon which this publication is based were performed under Contract Number 500-03-NW01 entitled End Stage Renal Disease Networks Organizations, Network of New England, sponsored by the Centers for Medicare and Medicaid Services (CMS), Department of Health and Human Services.The content of this publication does not necessarily reflect the views or policies of the Department of Health and Human Services. The authors assume full responsibility for the accuracy and completeness of the ideas presented. This article is a direct result of a Health Care Quality Improvement Program initiated by CMS, which has encouraged identification of quality improvement projects derived from analysis of patterns of care, and, therefore, require no special funding on the part of this contractor.

PII: S1548-5595(04)00182-X

doi:10.1053/j.ackd.2004.10.010

Advances in Chronic Kidney Disease
Volume 12, Issue 1 , Pages 107-112, January 2005

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