American Journal of Law & Medicine

Who will protect the "disruptive' dialysis patient?

I. INTRODUCTION

"There is an art to being a patient. Sometimes you must ask the hard questions and at other times, you must put your faith in the hands of another human being. In some way, doctors and their patients are partners. Some patients are good at it. Other patients get in their own way. It's like a dance." (1)

How common is the disruptive dialysis patient? Are outpatient dialysis centers equipped to handle such patients, especially when they only use threatening words? At what point can it be said that the involuntary discharge of such patients is warranted? What happens to these patients? If they find legal representation, under what legal authority may they continue to be treated?

This article revolves around the difficult situation of a particular patient with end stage renal disease. Although this condition is fully covered by Medicare, the patient was banned from all access to dialysis care in the outpatient setting. His caregivers regarded certain comments he made as so dangerous and threatening that he was discharged from that facility, and every other facility in his geographical area. With no options in sight, a treating hospital arranged for his care in its inpatient facility. Although the treating hospital saved his life, it was an undesirable solution for both the hospital and the patient. The patient was unable to find an outpatient dialysis home despite assurances to potential facilities that his support network would participate in his care, and despite a court's finding that he presented no danger to his current caregivers. The patient's situation only improved after he received a kidney transplant.

This Article relates the challenges of representing such a client and discusses the current debate in the dialysis industry. The Centers for Medicare and Medicaid Services' proposed Conditions for Coverage for End Stage Renal Facilities raise the question of the need for relevant regulations to be more patient-centered. The few legal cases that have been reported concerning such plaintiffs are examined. The Article concludes that private dialysis centers should not be free to dismiss their patients from care when their "disruptive" behavior may be addressed via certain accommodations by the facilities. Involuntary discharge must not occur without strict prerequisites, such as consent by the patient's treating nephrologists and documentation of efforts to resolve the situation.

Most dialysis chains are for-profit operations with healthy profit margins. They are situated, owing to a regular stream of Medicare funding, to maximize the talents in each of their centers in the form of interdisciplinary staff, and to face the challenges posed by the most difficult patients. (2) The support and direction provided by the Renal Care Networks make it possible for even the most difficult patients to be treated without jeopardizing the safety of other patients and staff'. No dialysis patient should receive a death sentence.

II. THE STRESSES OF BEING A DIALYSIS PATIENT

 
   "Upon hearing his name, Robert pitched his paper and walked to his 
   recliner, past a score of patients tethered to blinking, beeping 
   machines. Two thin plastic tubes, reddened by steady streams of 
   blood, snaked from each of the patients' forearms. On their inner 
   arms, dialysis patients have knots called fistulas, where doctors 
   connect a vein and an artery to enable them to receive dialysis. 
   The arterial tube feeds blood into the dialyzer, where a six-inch 
   filter composed of dozens of strawlike tubes draws out wastes the 
   kidneys can no longer expel. The cleansed blood is then pumped back 
   into patients' bodies. Without dialysis, Robert and the other 
   patients would die within a few weeks." (3) 

A. DIALYSIS

Almost 309,000 people were chronic kidney dialysis patients in the United States as of December 31,2002, the last date for which data is available. (4) Since the early 1970's, Americans suffering kidney failure, or End Stage Renal Disease (ESRD), have been afforded coverage for this lifesaving technological procedure: On October 30, 1972, Public Law 92-603 extended Medicare insurance coverage for transplantation and dialysis to those under 65 who were otherwise ineligible for cash disability benefits. (6) Despite the inevitable relief that accompanies this government benefit, life for the patient remains challenging and is oriented around four-hour dialysis treatments three times per week.

The basic reality remains that these hemodialysis patients are very sick. (7) As Edmund Pellegrino eloquently put it "[t]o lack health and to need treatment is to be in a diminished state of human existence - a state quite unlike other deprivations which can be borne if one is healthy." (8) The process of having toxic impurities in the blood system removed not by their own kidneys, but mechanically, is a boring, routine procedure to patients who are sick with end stage renal disease. It is not difficult for one to understand the loss of control that is inherent in the dialysis process. The patient confronts the possibility of dying with each treatment. (9)

Each person handles fear and loss of control in a way unique to that person's reserves of trust, faith or upbringing. Many do so very well. The vast majority of the hundreds of thousands of dialysis patients, seated in recliners, receive their care in a clinic simultaneously with other patients in the same room. (10) The workability of the delivery of dialysis care depends on calm, docile and quiet patients, who sit for four hour sessions, three days a week, in the clinic as their blood is cleansed. Indeed, patients who are trusting of their caregivers and blessed with the inner strength to undergo the procedure patiently each time are ideal for the care providers. However, some find it difficult to endure the process. For whatever reason, whether a past unfortunate medical experience, lack of self control, or a diagnosable psychiatric condition, there are times when patients do not sit quietly as they undergo dialysis. A number of patients become verbally abusive. One noted nephrologist has described this behavior as the patients' reaction to fear of their own deaths and to the loss of control over their own body. (11)

Recently, the Centers for Medicare and Medicaid Services published a proposed comprehensive patient-centered revision of the Conditions for Coverage for End Stage Renal Disease facilities. (12) A significant new proposed regulation requires the dialysis facility to inform patients of their right to be treated with respect, dignity and recognition of their individuality and personal needs. (13) The facility would also be required to demonstrate sensitivity to a patient's psychosocial needs and their ability to cope with End Stage Renal Disease. (14) A problem currently exists and has been a concern of the dialysis community since the treatment's inception: what to do with dialysis patients who do not sit quietly or meekly through their four hour dialysis procedures? This problem is described in the proposed regulations as "the "disruptive' or 'challenging' patient issue." (15)

B. OUR CLIENT

One summer, a few years ago, a social worker from a local hospital called our clinic to enlist our legal assistance for a dialysis patient. He was practically residing in the hospital because the caseworkers who were arranging his discharge care could not locate an outpatient dialysis facility to accept him as a chronic patient. (16) The hospital, unable to discharge him to outpatient placement, continued to treat him after his discharge in its inpatient dialysis unit among the hospital's patients who required dialysis. Neither he, nor the hospital, was happy with the arrangement. As the supervising attorney of the Health Law Clinic, I indicated our Clinic's willingness to interview the patient. Upon reflection, I realize that I was prompted to do so by a combination of factors. First, I thought there must be a dialysis facility that would be able and willing to accept this man. Surely, he just needed some help finding a facility to treat him. As advocates for this patient, we could work with the social workers at the hospital in this effort. I did not think of our investment in the case as anything more than non-litigation advocacy. Second, this was a patient who had no legal representative, but was desperate for it given the life and death stakes of his situation. Who else should the Health Law Clinic represent, if not this person? Third, his situation presented issues of health care access, without any coverage concerns, as he was covered under the Medicare program. Thus, the legal issues that clinic students would face in representing this client would draw us into large policy concerns, something that the Clinic does not always have an opportunity to do.

After representing him for nearly three years, I now have the opportunity to probe more deeply into our clinic's experience. Our client was not unique in how the limitations of the health care system affected him.

Just as the medical community shares its experiences regarding certain patients in an effort to learn, I tell this client's story and share our clinic's experience. Almost all of us were surprised at how contentious the case became and how unsuccessful our efforts were at finding him a willing dialysis outpatient facility. Finally, our representation led us into state and federal courts, as well as a dialysis clinic where we served as escorts for the client for several months.

III. UNDERTAKING THE CASE

A. PRIOR TO REPRESENTATION

The initial interview with our client was conducted in a hospital. The police brought him to the emergency room after he passed out on the street. The hospital had admitted him. He was a very tall African American, who appeared to be relieved that the clinic was interested in hearing his story. We undertook representation of the case based on the interview.

At the time, it had been nearly twenty months since he had been expelled from regular outpatient dialysis treatment at a facility that was operated by a large international dialysis chain. Since that time, our client's primary efforts were devoted to finding a place to receive his treatments. It was through this client that we entered the land of End Stage Renal Disease. In our attempt to help him find a dialysis home, we met nephrologists, registered nurses, dialysis technicians, licensed practical nurses, medical directors, administrators, dialysis chains and attorneys who represent ESRD patients.

It is not unusual for a patient to have a hard time placing his faith in other human beings when his life's blood is flowing in and out of his body from a dialysis machine. (17) This may be especially true when he senses that the technicians who are responsible for his life's blood are not fully engaged in the process, or when he is a person who finds it hard to trust people. Today, renal technicians provide a large percentage of the direct patient care services in most dialysis facilities. It is normal for one technician to provide dialysis care to three or four patients simultaneously. (18)

To a dialysis patient, access to blood supply is critical. (19) Access becomes a real concern to a patient as the entry ports to blood vessels deteriorate. Besides worries arising from the necessity of preserving the viability of access portals, other sources of anxiety surround transportation issues or the concern that one's nephrologist is not adequately involved in the patient's care. These stressors and the varying abilities of patients to handle them present special challenges to the dialysis staff, who have varying reserves of patience and understanding. (20)

Some dialysis facilities are unwilling to manage the unique challenges posed by such patients, and the patients suffer the consequences. The day eventually arrives for some "problem" patients when they utter one too many imprecations against the staff'. The medical director, a registered nurse, or the social worker may present a contract for the patient to sign by which he promises to refrain from unacceptable behavior, such as tardiness and use of profane language, subject to dismissal from the facility. (21) If a patient acts in a manner regarded as a breach of the contract, he is escorted from the facility and instructed never to return. Sometimes, the facility gives the patient a printout of the other dialysis centers' contact information and tells the patient to seek dialysis at one of them.

As we studied cases of other discharged patients, it occurred to us that there were uncomplicated alternatives to discharging our patient. Given the experience, resources and power of the facility as part of one of the most experienced international dialysis chains, our patient's behavior could have been managed and accommodated. A fundamental misunderstanding of the dialysis facility's treatment role ultimately led to his discharge.

The client was unsuccessful in gaining admission into another outpatient dialysis center. Two months alter discharging him, the facility obtained a preliminary injunction that forbade our client from going within 150 feet of any of six dialysis centers that were owned by the company (there was a total of twenty centers in the city). This court order sealed his fate with a judicial fiat, entered incredibly without his presence and without the presence of anyone looking out for his interests. He was hospitalized at the time of the scheduled hearing on the proposed preliminary injunction. The judge's order included a sentence that if he should come before the court at some time after his hospitalization, he would be given a hearing within five days.

B. REPRESENTING THE CLIENT

The preliminary injunction was in effect for eighteen months by the time we met our client. We requested a hearing on his behalf. The client was hospitalized on the day of the hearing, and was unable to attend. The judge permitted him to testily by phone during one of his dialysis sessions. The other witness on his behalf was the social worker at the hospital where he was being treated in the inpatient facility. Her testimony described a patient who became frustrated and who occasionally expressed his frustration verbally. She testified that she was able to work with him and that there had been no incidents with him at the hospital. She also testified that his dialysis treatment at the hospital was a temporary arrangement and that it was in his best interests to be admitted to an outpatient facility. (22) The regional manager of the dialysis facility that originally procured the injunction testified that our client scared people and made threatening comments during dialysis two years earlier. No evidence was presented that our client ever acted on these comments, returned to the center once he was dismissed, or did anything to violate the terms of the ill-gotten injunction during the eighteen months it was in effect. The clinic never had him arrested, but they hired a security guard after our client supposedly made a verbal threat.

In a conference with the judge during the hearing, the lawyer for the dialysis chain commented that nothing would change if the judge lifted the injunction. The chain's opinion on the law was that it had no obligation to accept our client for care, as it had validly terminated its care of him and it did not want him back as a patient. The Court lifted the injunction, finding that the testimony revealed that there was no risk of irreparable harm in doing so. The Court, however, added a sentence at the end of its order stating that it made no ruling on the duty of the dialysis corporation to provide care to our client.

After the hearing, the Clinic spent a lot of time working with the hospital to find our client a dialysis home. In this effort, we joined with the social workers at the hospital that had admitted him after he came through the doors of the emergency room. We drafted letters to the four national dialysis chains which operated in the geographical area. The letters explained that the injunction had been lifted. We attached copies of the Court's order, an affidavit from our client explaining his account of what happened, a copy of the behavioral contract he abided by at the hospital that housed him temporarily, and a request that an outpatient center accept him as a patient for a probationary period. In fact, we offered to accompany our client to his dialysis treatments for a period of time to provide for a peaceful transition. We asked to meet with representatives from the centers, and were even supported in our efforts by a local political official, whose acquaintance our client made. We also made follow-up phone calls. Unfortunately, no one would meet with us. Our client was still rejected.

What was evident to the court that dissolved the injunction, to his inpatient providers, and to us remained irrelevant to all of the outpatient centers in the relevant geographical area. Our client's situation was different. The injunction was dismissed, and a judge determined that our client posed no danger as a dialysis patient. It made no difference, however, to the dialysis industry in our local area. (23)

Our client began to receive counseling after the dialyzing hospital attempted to discharge our client. He was accused of saying something objectionable to one of the technicians and the hospital's counsel called our clinic with the complaint and expressed the hospital's frustration with having to continue to treat our client in what was supposed to be a temporary arrangement. After all, she said, there were other hospitals in the city that should also help with his care. We went to court on our client's behalf to procure an injunction compelling the hospital to continue his care, since there was no other alternative. In granting the injunction, the court ordered that escorts accompany our client to dialysis, which resulted in lawyers and students from the clinic accompanying our client at first, with members of the mental health team taking over later. This support worked well and the dialysis sessions went smoothly, both from our client's viewpoint and from those in the inpatient unit. No outpatient dialysis facility ever accepted him.

Thankfully, our client eventually received a kidney transplant four years after his expulsion from the clinic and the entry of the injunction. As his life takes on more of an aspect of normalcy than he has known for many years, the legal actions which we filed on his behalf remain, as a kind of vestigial pain. (24)

Dr. William Winslade notes that the problem of disruptive dialysis patients is serious and common in the ESRD program. (25) Additionally, there are indications that the problem is beginning to attract the attention of Medicare, the primary funding source. How common is the disruptive patient in the dialysis setting; what has Medicare's role been as the funder of the ESRD program in the face of these challenging patients; and was the legal recourse our clinic pursued the only way to advocate for such clients when they are shunned by all dialysis providers. What else could we have done? As Fox and Swazey observe, those who are involved in dialysis are confronted by many problems that were faced by their predecessors before End Stage Renal Disease was a Medicare-covered benefit, and they are also confronted by new difficulties that emerged because it is a covered benefit. (26)

IV. THE DISRUPTIVE DIALYSIS PATIENT PROBLEM

Much has been written about "non-compliant" patients in the dialysis setting. One study found that non-compliance in hemodialysis patients occurs in 2% to more than 50% of patients, depending what definition is used. (27) When used in the context of following medical instructions, the definition of non-compliance includes skipping one or more dialysis treatments in a month, shortening one or more dialysis treatments in a month by 10 or more minutes, and a certain weight gain in a short period. (28) In the behavioral domain, non-compliance includes antisocial or combative behavior in any chronic illness that reflects the patient's fear, fatigue, and anxiety. (29) Paramount in the mind of anyone who is grappling with the challenges posed by a person who upsets the atmosphere in a dialysis center should be the realization that such a person is sick. Trust (30) is required of the most spiritually and psychologically healthy dialysis patient; but many patients are not able to summon reserves of trust to assist them through the process of relinquishing their "precious bodily fluids" to another, especially when the person is not their physician, but merely a technician. (31)

In 1968, in a landmark article concerning the ethical challenges inherent in the treatment of ESRD prior to Medicare's assumption of coverage for the disease, the authors noted that physicians were aware of the psychological problems accompanying the dialysis process. (32) They stated that irritability and depression accompany uremic syndrome (33) and they observed that the frequent and "close" nature of the treatments can result in disturbed behavior. (34) Considering the amount of time a patient must spend in the dialysis center totally dependent on the dialysis health care providers, it is to be expected that stresses and anxieties will erupt in undesirable remarks, behavior and attitudes. In fact, studies suggest that 44% of all patients have depression at the start of dialysis, but only 16% receive treatment for it. (35)

The sick understand to their core what physicians themselves agree is the most important feature of health care: the personal relationship between a health professional and a person seeking help. (36) No one can take issue with a health care definition that is the provision of assistance to persons in need of care, education, prevention, a cure, or help related to trauma, illness, disease, disability or dysfunction by others knowledgeable and skillful in providing such assistance. …

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