© Hoyle Leigh & Jon Streltzer 2015
Hoyle Leigh and Jon Streltzer (eds.)Handbook of Consultation-Liaison Psychiatry10.1007/978-3-319-11005-9_2828. The Renal Dialysis and Kidney Transplant Patient
(1)
Downstate Medical Center, State University of New York, 1919 San Ysidro Dr., Beverly Hills, CA 90210, USA
(2)
Baystate Medical Center, Tufts University School of Medicine, 759 Chestnut St., Springfield, MA 01199, USA
28.1 Introduction
28.3.1 Delirium
28.3.3 The Anxiety Disorders
28.3.5 Sexual Dysfunction
28.6 Palliative Care
28.1 Introduction
Kidney disease is widespread and endemic. It is estimated in its latest available statistics that 27 million people in the US have chronic kidney disease (United States Renal Data System 2012). Its extreme form, renal failure (ESRD) is diagnosed in 117,000 people in the US yearly.
There are 86,000 people in the US waiting for a kidney transplant and 355,000 on form for dialysis. Medicare is the major payer for treatment of renal failure in the US for which it spends $47.5 billion yearly. Therefore, the treatment of renal failure is a major part of American medicine. In order for the behaviorally trained professional to make any depth impact in the study and/or treatment of these patients, he/she must have a working relationship with the nephrology staff (Levenson and Olbrisch 1993). Contact starts at the top of the nephrology/transplant surgery chain of command. If the relationship is to be anything more than an outside specialist rendering judgment, it is essential that one be accepted by the director of nephrology/transplant surgery as a member of the team (Cohen et al. 2005a). If so, then there may be a possibility for a true liaison relationship to develop. If not, then the relationship is most likely constrained to a limited consolatory one. Lest one be too optimistic about entering such a relationship, one needs to be reminded that, in general, resistance and at times hostility toward a behavioral view surrounding physical illnesses and their treatments can and often are great among physicians (Reichsman and Levy 1972).
There is a good body of research and clinical experience about the behavioral aspects of dialysis and renal transplantation because the kidney is the first vital organ that has been transplanted and the first for which there is a mechanism for its artificial substitution by dialysis. Nevertheless there is still a dearth of systematic, mutlisite studies. With these shortcomings in mind, the authors of this chapter will endeavor to tell the reader what are their major stresses, their various forms of treatment, the psychological problems of these patients and how the behaviorally trained professional may help these patients.
28.2 Forms of Dialysis and Stresses and Their Treatment
There are two forms of dialysis, hemodialysis and peritoneal dialysis. In the former, the patient’s blood is delivered into the dialysis machine and separated from dialysis fluid via a semipermeable membrane. The processes of dialysis is an osmotic one in which compounds flow through a semipermeable membrane from the higher concentration side into the side of the membrane with a lower concentration of those substances. For example, if the ionic concentration of potassium is lower in the dialysate fluid than in the patient’s blood, potassium will flow from the blood through the membrane and into the dialysate fluid (Parker 1992). In peritoneal dialysis, dialysis fluid is delivered via an abdominal fistula directly into the peritoneal cavity and the peritoneum serves as the semipermeable membrane. Careful consideration is given to what constitutes dialysis fluid. Of course, water is its main constituent. The selection of substances in the water involves a molecular size small enough to go through the membrane and substances that need to be removed and others replaced.
Dialysis, more so than any other form of medical treatment requires dependency on a machine, a procedure, and to a group of professional personnel. The very independent patient may therefore have difficulty tolerating dialysis. On the other side of personality types, the very dependent patient may derive some sort of satisfaction in such dependency making his/her rehabilitation back to work, school, or home activity more difficult. The medical-psychiatric liaison professional may aid the nephrology team early on in selection of a modality of treatment for renal failure (Levy and Wynbrandt 1975). In general, independent people do better in situations of less dependency such as renal transplantation, continuous ambulatory peritoneal dialysis, or home hemodialysis.
28.3 Psychiatric Complications and Their Treatment
28.3.1 Delirium
As defined (DSM-5 2013), delirium is a disturbance in attention and cognition usually developed over a short period of time. It is one of the most overlooked/underdiagnosed syndromes in the medically ill, especially in people with renal failure. Its many causes include that produced by medication and that by a medical condition. Dialysis patients are prone to many medical complications such as anemia, fluid overabundance, secondary hyperparathyroidism and uremia. Concerning the latter and its treatment, people with renal failure before and often during treatment are uremic. We know that it is not the overabundance of urea that causes this problem. For example, if one injects urea into an experimental animal it will not produce what we consider to be a uremic state. Rather, it is an accumulation of various toxic substances that are removed by a normal kidney that gives rise to it. Unlike the person with normal 24/7 kidney function, the dialysis patient is intermittently uremic, due to intermittent kidney-like function. Also, the process of dialysis in relatively rapidly shifting electrolytes and fluids may give rise to what is termed “disequilibrium syndrome” which is not uncommonly seen during and after dialysis runs.
28.3.2 Depressive Disorders and Suicide
Depressive and anxiety disorders are common complications of medical and surgical illnesses (Levy 1989). Most often the depressive disorders are precipitated by a loss that is real, threatened, or fantasized.
Patients with renal failure, especially those on dialysis sustain many such losses. Most never return to the outside work, household, or school activities they had prior to suffering from kidney failure (Cukor et al. 2013). The loss of a job is a major event in that it not only results in a loss of money, but it usually is associated with a loss of self esteem as well as a loss of the sense of masculinity in men and femininity in women. Further, patients on dialysis have a loss of personal freedom, a loss of independence, a loss of life expectancy, and a loss in their healthy appearance (Rosenthal et al. 2012). The medical regimen of these patients involves a loss of the freedom to choose the foods they like to eat and restraint in fluid intake (Gressel et al. 2014). There is usually a loss in appearance. Patients on dialysis usually have a change in their complexion in which they appear almost sun tanned, but not of a healthy looking brown. Because the avenue of access to the circulatory system involves the surgical creation of arterio-venous fistulas, both the scars of these procedures as well as the often snake-like bulging caused by the arterialization of the venous system compromises their appearance.
From the earliest days of dialysis, it was noted that the incidence of suicide in these patients seemed to be higher than in the general population or in other chronic medical illnesses. The earliest systematic study of this observation was conducted by Abram and his colleagues (Abram et al. 2001). They sent out questionnaires to all of the existing hemodialysis centers in the US at that time. With about half of the questionnaires returned and poor statistics as to comparisons, they, nevertheless concluded that suicide in dialysis patients was 500 times greater than in the general population. Although this study is a flawed one, in its somewhat dramatic conclusion it brought attention to the subject of suicide in these patient populations. To the best of knowledge of the authors of this chapter, there has been no valid study to date of suicide in dialysis or renal failure patients. The problem here is in the accuracy of statistics concerning suicide. To illustrate, in 1961 when the Nobel Prize novelist, Ernest Hemmingway left treatment for depression at the Mayo clinic and went home to Ketchum, Indiana and shot himself in his mouth, the coroner in that town registered his death as due to natural causes. Less dramatically, is not voluntary withdrawal from dialysis, a self-death? There is also a large gray area in people not adhering to diet and fluid restriction. These and other methods of self-destructive behavior, whether conscious or not border on methods of self-death.
Interestingly, when one looks as who does the act of suicide, one is confronted with interesting conclusions. For example, each year more New York City policemen die from suicide than in the line of duty. For the past several years more US servicemen and servicewomen die due to self-injury than in battle. Although there are no credible statistics, most would agree than more members of health professions kill themselves than the general population. The obvious reason seems to be that if the individual has a means of suicide at hand, there is a greater chance that the individual will meet his/her death by that means. This is the case of the dialysis patient. In years past when the portal of delivery of hemodialysis was the external arterio-venous shunts, many patients died by their disconnecting the arterial portion of their shunt. Now, as then, a method of suicide is going on a high potassium diet and/or not showing up for a few hemodialysis runs.
The accepted ideal treatment of the depressive disorders is by the use of antidepressant medications and psychotherapy. Unfortunately, the ideal and the practical treatment often do not meet in this group of patients. It has been observed and initially described (Reichsman and Levy 1972) that people with kidney failure are among the most resistive toward a psychological view of their lives. It is often rationalized by, “If you had my illness, you would be as sad as I am”. Nevertheless, the more insightful patient may be amenable to a talking therapy. Cukor and his associates have done some groundbreaking studies on modified cognitive behavioral therapy (CBT) on dialysis patients (Cukor et al. 2013). They have shown that this form of therapy reduces depressive affect, improves quality of life, and promotes treatment adherence well within statistical significance. Medication, namely antidepressants are usually more acceptable than talk because they adhere to the traditional medical model of illness and are viewed by many as less spooky than talking therapy. A discussion of their use appears later in this chapter.
28.3.3 The Anxiety Disorders
Where there is depression there is often anxiety as well (Cukor et al. 2007). But it may also exist by itself because anxiety is the body’s protective mechanism against threats to its integrity, again real, threatened, and/or fantasized. The patient treated for renal failure has many potential reasons to be anxious. For the person who has been transplanted, there is the continual fear of organ rejection. Dialysis invokes many potential fears. Since the procedure involves continual removal of blood into an apparatus and then its return, there is always the possibility of blood loss. As previously mentioned the relatively rapid removal of electrolytes and fluid often produces a transient disequilibrium syndrome, making the patient borderline delirious and possibly anxious. In center hemodialysis units it is not uncommon to see major medical problems among fellow patients including cardiac emergencies and occasionally death of patient being dialyzed. In addition, changes in staffing and waiting for medical procedures usually are associated with anxiety. Quality of life is materially affected by anxiety (De Sousa 2008).
28.3.4 The Noncompliant and Aggressive Patient
When consultation-liaison psychiatrists or other behavioral professionals are asked to speak to a group of nephrology professionals, more often than not, the subject will be “the noncompliant patient”. That observation underscores the commonality of this problem for nephrology staff. As to its definition, “noncompliance” is a subjective conclusion and may vary from one observer to another. It is being used in this chapter not to include the patient who is just annoying, questioning staff, or requesting second opinions, but rather to include the very distressing, extremely demanding person including people who continually does not adhere to their medical regimen to the extreme degree.
Two factors need to be considered in studying this subject. First, renal failure patients do not represent the crosssection of society. They are heavily weighted in the direction of lower class, impoverished people, those who did not adhere to their medical regimen as hypertensives and diabetics, and people with addictive disorders. The antisocial person is overrepresented in this group of patients. Therefore, one can see why these patients, as a group may be different from the general population or other people with chronic medical illnesses in adherence to diet and other aspects of the medical regiment of renal failure. The second factor is understanding how different personality types adjust or fail to adjust to chronic medical illness. As previously mentioned the very independent or very dependent patient will respond differently to different forms of renal failure therapy. Once again, we wish to underscore the importance of the behaviorally trained professional to be involved in advising nephrology staff as the selection of a modality of treatment that compliments the personality type of the individual. Again, the very independent person should be steered in the direction of self-care or transplantation. Factors that may be helpful in the treatment of noncompliant persons include an understanding that failure to adhere to the medical regimens will result in possible hospitalizations and, more likely, a decrease in life expectancy. When noncompliance involves missing dialysis runs or aggressive behavior, it is important for staff to maintain minimal tolerance for it. Again, early on, it is important for the unit to make it clear any behavior that affects the safety of staff and patients will be treated as a police matter. Further, chronic offenders including people who repeatedly miss dialysis runs should be transferred to other units if feasible.
Case Vignette
A 64-year-old man had been on maintenance dialysis 3 times weekly and an outpatient dialysis facility for 4 years. One day he did not show up for dialysis. He was phoned at the boarding home where he lived, and he stated he was not coming in for dialysis anymore. He gave no further explanation. The unit social worker asked the psychiatric consultant to join her for a home visit to evaluate the patient. The patient gradually revealed that he was hurt and angry because the staff nurses had been giving him relatively little attention lately in contrast to that given a new patient. He stated that he believed the nurses did not want him coming in anymore. He was reassured that he was an important member of the dialysis community. This staff nurses, who had been completely unaware of the patient’s feelings, were happy to provide increased attention and socialization with the patient. For this patient the main source of social stimulation was in the dialysis unit which had essentially become a surrogate family for him.
28.3.5 Sexual Dysfunction
Many years ago Belding Scribner, an early pioneer in treating chronic renal failure observed that one-third of men on dialysis were totally impotent, one-third are partially impotent, and one-third have no impotence problem (Levy et al. 1974). This led to a few studies, most of which were conducted by questionnaires that showed that Scribner was almost correct. When women were asked about their sexual functions, a significant group, but less than men, said that they had issues of sexual dysfunction, in particular, a decrease in libido and decrease in orgasm. Renal transplant patients also have similar problems with sexual function, but at a far lesser degree than dialysis patients (Levy 1973).
There are several modalities of treatment of sexual problems in these patients. Since depression is often closely associated with sexual dysfunction, the relief of depression can reduce and even cure sexual problems in a significant group of these patients. Masters and Johnson techniques (Masters and Johnson 1970) have been used with success on selected patients. In men, the use of agents that increase the release of nitric oxide in the corpus cavernosum of the penis such as sildenafil (Viagra) and similar medications have been received as a gift to many patients.
28.4 Pharmacology of Renal Failure
In addition to its discussion in this part of this chapter, pharmacology will also be discussed later on.
Pharmacokinetics refers to the factors affecting the passage of pharmaceuticals from their entry into the body to their excretion (Callaghan et al. 1999). The five phases of pharmacokinetics are given below in bold print. Drug absorption is crucial because it encompasses how much of the medication actually enters the body, usually via the gastro-intestinal system. Except in rare cases of gastroparesis or GI edema, both of which are associated with slower absorption, patients with renal failure do not have any significant change compared to those with normal kidney function. Drug distribution refers to the concentration of that medication in body tissues. The distribution will be increased in the cachectic patient and decreased in the edematous. Protein binding refers to the ability of the body to bind the drug to body protein, in particular albumin. The free, unbound portion of the drug is that which is therapeutically active. Renal failure patients have a significantly diminished ability to bind pharmaceuticals to body protein, thereby making more of the drug available for both therapy and toxicity. Since virtually all medications with the exception of lithium that are used by psychiatrist have a high degree of protein binding, the general rule is that one should not prescribe for renal failure patients more than three-fifths of the maximum dose given to those with normal kidney function.
Since, the major organ for drug metabolism, is the liver (again, with the exception of lithium), which eliminates metabolites in bile, making drug excretion an issue only in those few drugs such as lithium that are excreted by the kidney in urine.
With few exceptions, most psychologically active medications are fat soluble, pass the blood-brain barrier, are metabolized by the liver, and excreted by the bowel. One should use a lower than maximum dose of every drug used in renal failure patients than those with normal renal function. This axiom should be kept in mind in the description of medications mentioned below.
When used judicially, antidepressants may be an important part of the treatment of these patients. One must keep in mind that the major handicap in the use of tricyclic medications is the potential issue of overdose in a population with a high incidence of suicide. Because of the issue of suicide and because tricyclic antidepressants are very anticholergic, the SSRI’s are preferred.
Although there is less data on the use of antipsychotics in these patients, they may be used with caution. One should keep in mind the issue of QT prolongation as one would in patients with normal renal function. There is a host of potential side effects of clozapine including the more recent interest in relatively high incidence of pericarditis in those receiving this medication. The data released in the CATIE studies (Lieberman et al. 2005) indicate some advantage in the use of the older typical antipsychotics because they have a longer track record than the atypicals.
Benzodiaazepines are commonly used for the short-term treatment of anxiety, but risks may exceed benefits if used daily over the long term (see Chap. 20). Lorazepam, which is removed by the kidney in those with normal renal function, reverts to hepatic metabolism with excretion in bile in kidney failure, and therefore may be used in these patients (Lam et al., 1997).
Among the mood stabilizers, lithium is a unique medicine, especially in its use in patients with renal failure. It is dialyzable and thereby removed entirely by the artificial kidney. It may be given as a single dose after each dialysis run and will be maintained at about the same concentration in the body because its avenue of excretion, the kidney is blocked in renal failure. When the patient is dialyzed lithium’s small molecule passes through the semipermeable membrane and is eliminated. There is less data concerning the use of the antiseizure medicines, chief of which is valproate. However, experience has shown that they may be used in patients with renal failure (Levy 2000).
28.5 Withdrawal from Dialysis
Consulting psychiatrists may be asked to provide perspective and advice to nephrologists when their patients wish to forego or to discontinue dialysis, particularly in cases in which the treating physician is not comfortable with a patient’s decision. The willful rejection of life-prolonging treatment is an emotionally laden issue, and cognitive dissonance between patient and physician may manifest itself in assertions of patient psychopathology or in questions about the patient’s capacity to make this decision in an informed manner.
It is important in such consultations to understand that they occur at a time of cultural change in the dialysis community. At its emergence in the 1960s, dialysis was a self-limiting, scarce resource. This has changed, and with availability of dialysis no longer limiting its employment, patients and caregivers have since been forced to confront the limitations and the individual, social, and ethical consequences of the treatment itself (Russ and Kaufman 2012; Russ et al. 2007). A struggle to set informed standards for the initiation and maintenance of dialysis has ensued and is reflected in the nephrology and broader medical literature of recent years. This struggle has occurred in the context of larger social dialogues centering on patient autonomy, emerging models of collaborative medical decision-making, and death with dignity.
The survival curve for ESRD (Chronic Kidney Disease Stage 5) patients on chronic dialysis is not encouraging, particularly for those with substantial comorbidities (Cohen et al. 2006; Schell et al. 2013). According to the USRDS 2009 Annual Data Report, adjusted rates of all-cause mortality are 6.3–8.2 times greater for dialysis patients than for the general population (USRDS 2010). Older age, peripheral vascular disease, major neurocognitive disorder, low albumin, and treating nephrologists’ subjective impressions of survivability are significant variables in near-term mortality. The latter is according to a validated model for predicting 6-month mortality among hemodialysis patients developed by Cohen et al. (2010). The rate of dialysis withdrawal is higher among the elderly, older, and presumably more fragile patients. These patients have been a rapidly growing segment of the dialysis population. This includes the very elderly (80 years and above), whose rate of dialysis initiation increased by 57 % between 1996 and 2003, and whose subsequent 1-year mortality was a sobering 46 % (Kurella et al. 2007; Swidler 2013). Russ and Kaufman (2012) noted that the initiation of dialysis was often a matter of passive acquiescence to physician advice on the part of older patients, commenting that “older patients generally accept dialysis treatment but do not choose it.” This, of course, is none too solid a footing for treatment with uncertain long-term benefits. It is in this context that the American Society of Nephrology places explicit emphasis on a shared decision-making process between patients, families and physicians in initiating dialysis (RPA; Williams et al. 2012).
For those initiating treatment, dialysis even under the best of circumstances exacts its own considerable price, and at least a fifth of patients do ultimately withdraw. Existing data point to a steady increase in this proportion, with withdrawal rate varying by age, sex, and race/ethnicity (Renal Physicians Association and American Society of Nephrology 2010; Cohen et al. 1997; Kurella et al. 2010). The stage of illness at which any particular patient reaches a threshold for discontinuing dialysis is highly individual, and is further influenced by culture, religion, and family.
Unfortunately, despite an increased awareness in the field of the limitations of dialysis in time and tolerability, and of the need for anticipatory discussions of treatment goals and end points, only a minority of ESRD patients complete advanced directives. This potentially leaves physicians and surrogates with little concrete guidance if substituted withdrawal decisions must be made (Kurella et al. 2010).
In early studies on ESRD, voluntary cessation of dialysis was indiscriminately labeled as being a type of suicide (Abram et al. 2001). While ESRD patients do in fact have an increased risk of suicide compared to the general population, withdrawal from dialysis before death occurs much more commonly, and a distinction in the psychiatric literature between pathologically-driven suicide and rational treatment termination in dialysis patients has since been recognized (Kurella et al. 2005). Rational motives for a patient to refuse dialysis are legion. If they are not transplant candidates, chronic dialysis patients suffer significant discomfort, inconvenience, and progressive functional disability, in return for which they may sometimes expect a limited extension of life on the edge of uremia. The duration of such extended life is particularly small in older and sicker patients (Chandna et al. 2011) for whom standard palliative measures offer incomplete relief of physical symptoms while adding their own side effects to the overall burden of care. Loss of autonomy and quality of life for the poor prognosis patient can reduce the effect of chronic dialysis to a prolongation of the dying process (Brown 2012). Under such circumstances, withdrawal from dialysis is appropriate and permits the facilitation of a “good death,” with comfort, dignity, and brevity (Cohen et al. 2005b).
Patients may also refuse dialysis for reasons that are pathological. As elsewhere described there is an impressive array of psychiatric disorders found in the chronic dialysis/ESRD population including, most commonly, depressive and anxiety spectrum disorders, followed by delirium and major neurocognitive disorder; psychotic and substance abuse disorders are also well-represented (Kimmel et al. 1993, 2007; Halen et al. 2012; Cukor et al. 2007). Kurella et al. (2005), drawing on data from the United States Renal Data System (RDS) and the Centers for Disease Control and Prevention, have described a higher rate of reported deaths by suicide among ESRD patients as compared with the general population. Independent predictors include advanced age, male gender, white or Asian race, geographic region, substance dependence, and recent admission for mental illness. Risk for suicide was found to be highest in the first 3 months after initiation of dialysis, subsiding thereafter. Dialysis-dependent patients can also more passively take their own lives by missing treatments and medications, engaging in dietary indiscretions, and ignoring fluid restrictions. Rosenthal et al. (2012) found depressive affect as measured by the Beck Depression Inventory to be a significant predictor of mortality in a cohort of 130 urban ESRD patients on hemodialysis, with a concurrent, strong association noted between depression and medication nonadherence. Consulting psychiatrists are commonly asked to help distinguish pathological from benign motives in patients refusing dialysis and to guide physicians struggling with the decision of whether to honor or challenge these refusals. In such a consultation, the most important initial decision made by the psychiatrist is how stringent a test to apply for capacity.
The setting of a situation-specific standard for capacity by the consultant is substantially influenced by the perceived risks and benefits of the proposed dialysis and by whether a refusal can be considered medically reasonable under the circumstances. The consulting psychiatrist should discuss these case-specific issues with the treating nephrologist and should be aware that the Renal Physicians Association (RPA) deems it appropriate to withhold or withdraw dialysis under a number of circumstances. These include the direct request of acute renal failure or ESRD patients with decision-making capacity; incapacitated patients who have previously refused dialysis in oral or written directives, or whose legal agents refuse dialysis in their behalf, patients with irreversible, profound neurological impairment lacking evidence of awareness, thought, sensation, and purposeful behavior (RPA 2010; Cohen et al. 1997, 2003; Moss 2001). In addition, the RPA recommends consideration of forgoing dialysis for patients with a very poor prognosis or for whom administration of dialysis is unsafe—including patients with advanced major neurocognitive disorder who are unable to cooperate with the procedure itself (RPA 2010). One potential pitfall in the nephrology recommendations should be noted. From the consulting psychiatrist’s point of view, it is troublesome to uniformly assign a low capacity standard for dialysis refusal to those patients who are uncooperative or combative with the dialysis procedure, as they may include individuals with psychotic, neurodevelopmental, or mood disorders that are potentially treatable. Likewise, the consulting psychiatrist must tread carefully around the determination of irreversibility of neurological impairment, being aware that it is not unknown for renal failure to precipitate catatonia (Huang and Huang 2010; Carroll et al. 1994).
In setting capacity standards, it is also helpful to refer to the degree to which patients’ decisions are culturally endorsed and supported by family and loved ones. This is not to say that an individual patient’s decision must be popular. Rather, it is to say that to the degree a decision to terminate dialysis conflicts with a patient’s traditional values and imperils social bonds, suspicion of a capacity-altering mental illness should be heightened. In such cases, a more exacting examination of the patient’s information-processing and reasoning is appropriate.
In addition to setting an appropriate threshold for decision-making capacity, it is important to be cognizant of the fact that psychiatric illness in and of itself cannot be equated with incapacity to refuse dialysis.
The existential, spiritual or developmental struggles at the end of life should not be unnecessarily labeled as pathological. Ambivalence and even anguish about relinquishing life-prolonging treatment is to be expected, and may also be found in those parties most intimately involved in the patient’s life and care. Nonetheless, severe psychiatric disorders can be incapacitating and should be ruled out in cases of life-threatening noncompliance and early dialysis termination. Major depressive disorder, particularly when complicated by psychosis can readily interfere with an individual’s ability to retain, weigh, and cognitively process information and should be suspected in clinically suspect dialysis refusals (Cohen et al. 2003). There are instances in which it is appropriate and necessary to defer dialysis discontinuation while treating comorbid psychiatric illnesses (Cohen et al. 2003).
As previously noted, the concept of “shared decision-making” is now emphasized in dialysis decisions (RPA 2010; Williams et al. 2012). Often the need for a capacity determination is itself an indication of failure in a shared process that should ideally build consensus among stakeholders, including patient, family, physicians, and other significant caregivers (Cohen et al. 2003). A number of potential sources of conflict are described in the RPA recommendations, including miscommunication or misunderstanding about the patient’s prognosis, participant values, interpersonal, and individual issues. From the psychiatric perspective, reframing a capacity consultation to focus on restoring dialogue between participants may be a more helpful intervention than seemingly vindicating one or another party. Where a consensus cannot immediately be reached, RPA guidelines suggest considering a time-limited dialysis. In the event of emergent circumstances, the RPA recommendations suggest providing dialysis with the consent of the patient or legal designate while allowing conflict resolution to proceed. The psychiatric consultant may be called upon to provide an emergent, temporizing capacity determination if such consent is withheld. It should be reiterated, however, that while shared decision-making and stakeholder consensus is the ideal, patients with intact decision-making capacity have the right to unilaterally refuse dialysis.
Once a decision has been made to withhold or terminate dialysis, it can be anticipated that lethargy, coma, and death will ensue within a mean time of 8 days. The International Dialysis Outcomes and Practice Patterns (DOPPS) study found that 79.1 % of patients died within 10 days of withdrawal (Cohen et al. 2006; Fissell et al. 2005). It has been traditionally taught that uremic deaths are gentle. However, retrospective, family-derived data have described severe pain in a preponderance of dying ESRD patients during the last week of life (Cohen et al. 2005a). This highlights the fact that psychiatric consultation does not necessarily end with the withdrawal of dialysis. The termination of life-prolonging treatment provides an opportunity for the psychiatric consultant to help smooth the transition of the patient’s care to a primary goal of palliation.
28.6 Palliative Care
Patients with ESRD are defined by clinical suitability for dialysis or transplantation. These patients are an at-risk population for vascular events, with increased risks of acute myocardial infarction, congestive heart failure, and cerebrovascular accidents/transient ischemia and with accompanying graded increases in mortality from these conditions with advancing kidney disease (United States Renal Data System 2012). These patients are increasingly elderly with multiple comorbidities, entering ESRD with a median age of 65 (Cohen et al. 2006) and with a mortality rate eight times that of the general Medicare population (Werb 2011).
Prognosis in ESRD is felt by the Renal Physicians Association (2010) to be particularly poor for patients with at least two of the following: age 75 years or greater, high comorbidity, marked functional impairment, and severe, chronic malnutrition. The RPA (2010) now recommends prognostic estimates be provided to patients with Acute Kidney Injury, Stage 5 Chronic Kidney Disease (ESRD). Proximal causes of death in patients with renal failure are for the most part related to cardiovascular events, but septicemia, dialysis withdrawal, stroke, sequelae of calciphylaxis, and complications of diabetes are also represented in ESRD deaths (Werb 2011).
In addition, psychiatric syndromes, anemia, and diseases of bone, skin, and joints are frequently found. To this substantial burden of illness is added the systemic and growing effect of uremia itself, along with symptoms referable to treatment. Chronic pain in hemodialysis and ESRD patients is common, significant, and often ineffectively managed (Davison 2003, 2005).
Taking mortality and illness burden into account, dialysis patients are often appropriate for consideration of palliative care (Werb 2011; Davison 2003, 2005). Unfortunately, ESRD care in the United States tends to be fragmented and poorly reflective of patient goals and prognosis, with uneven and inadequate access to palliative care resources (Kurella and Meier 2013).
28.6.1 General Issues in Renal Palliative Care
End Stage Renal Disease patients live with protracted somatic discomfort. As a group, patients have been described as suffering an average of 10.5 symptoms at any given time, including most prominently fatigue, pruritis, pain, cramps, sleep disruption, anorexia, and constipation (Merkus et al. 1999; Valderrqabano et al. 2001; Weisbord et al. 2003). Sexual dysfunction is also common and is discussed elsewhere in this chapter. Remedies are available for most symptoms, but are limited in efficacy and tolerability. Issues of comfort and palliation have a direct impact on the course of intercurrent psychiatric conditions. Consulting psychiatrists should be aware of some common issues in renal palliative care and should tailor interventions to add to patient comfort during life-prolonging treatment as well as during the dying process.
Fatigue is common and multifactorial in etiology. Sleep disturbance, anemia, physical deconditioning, and depression may contribute, in addition to hyperparathyroidism, uremia, and effects of dialysis itself (Murtagh and Weisbord 2010). Exercise, cognitive interventions, and other nonpharmacological measures should be integrated into treatment where possible (Murtagh and Weisbord 2010). Other nonpsychiatric issues such as hypothyroidism should be ruled out, and treatment of kidney disease-related anemia with erythropoietin-stimulating agents considered (Murtagh and Weisbord 2010). Existing psychotropic medications should be reviewed in order to minimize those with potential for contributing to sedation, anergia, and abulia. A psychostimulant like methylphenidate may be used symptomatically (Cohen et al. 2006).