A textbook on palliative care would not be complete without a chapter on kidney disease. Palliative care is especially appropriate for patients with kidney disease who are undergoing dialysis because of their significantly shortened life expectancy, high symptom burden, and multiple comorbid illnesses. In addition, there is a unique need for advance care planning for these patients because of their dependence on life-sustaining treatment for their continued existence and because, for approximately 25% of these patients, death is preceded by a decision to stop dialysis. As in other populations, pain is undertreated. Research suggests that 75% of patients undergoing dialysis have either untreated or undertreated pain. Treatment of pain in patients with kidney disease is more challenging because of the renal excretion of some opioid metabolites and the development of opioid neurotoxicity. For this reason, codeine, meperidine, morphine, and propoxyphene are not recommended for the treatment of severe pain in patients with kidney disease. The nephrology community has developed a clinical practice guideline on dialysis decision making. The guideline endorses the process of shared decision making in reaching decisions about who should undergo dialysis. It recognizes that the burdens of dialysis may substantially outweigh the benefits in some patients. Almost all patients with end-stage renal disease (ESRD) who stop dialysis die within a month. Research shows that only about half these patients are referred to hospice. This chapter describes the growing interest in the nephrology community of incorporating palliative care into the routine treatment of patients with chronic kidney disease (CKD), particularly for those who receive dialysis.
Relevance of Palliative Care
There is an increasing recognition that skills in palliative and end-of-life care are required for physicians, nurses, and others who treat patients who have ESRD and who are undergoing dialysis. The principal reasons are as follows: First, patients with ESRD who are undergoing dialysis have a significantly shortened life expectancy; they live approximately one fourth as long as age-matched patients without kidney disease. For example, a 70-year-old white man starting dialysis has a life expectancy of 2.8 years, compared with 13.2 years for an age-matched white man in the general U.S. population. The 5-year survival for incident patients undergoing dialysis is only 38%, and the 10-year survival is only 20%. Patients for whom palliative care is unquestionably considered appropriate (e.g., those with cancer and acquired immunodeficiency syndrome) have more than twice the survival rate of patients with ESRD. Approximately 23% of patients undergoing dialysis in the United States die each year. In the United States in 2007, more than 87,000 patients undergoing dialysis died. Approximately 20% of those patients died after the decision was made by the patient or family to stop dialysis. There is an average of 17 deaths per dialysis unit per year. Hence, the death of patients undergoing dialysis is a common experience for health care professionals who treat them.
Second, patients with ESRD have multiple comorbidities and consequently many symptoms. The majority of patients have congestive heart failure and coronary artery disease. Forty-five percent of all new patients undergoing dialysis have diabetes mellitus as the cause of their renal failure. Cardiac disease accounts for 45% of all-cause mortality in patients undergoing dialysis. More than 80% of new patients undergoing dialysis have anemia at the start of dialysis. Peripheral vascular disease is also prevalent in 20% to 45% of new patients depending on the population studied. With better care of cardiac disease, diabetes, hypertension, and cancer, patients are living long enough to develop kidney disease, and older patients with considerable comorbidities who previously would not have survived as long are now starting dialysis. Patients undergoing dialysis have been found to have a mean number of nine symptoms per patient; pain, fatigue, and itching are ranked as most severe by the highest number of patients.
Third, the dialysis population has been growing progressively older. In 2002, the median age for new patients starting dialysis in the United States was 65.1 years. The incidence rates of ESRD are highest in patients 75 years old and older, and they continue to rise in this group. Older patients survive the shortest time on dialysis, and they withdraw from dialysis significantly more often than younger patients.
In consideration of the high symptom burden and the low survival rate for patients undergoing dialysis, leading nephrology organizations such as the American Society of Nephrology (ASN) and the Renal Physicians Association (RPA) have recommended that dialysis units incorporate palliative care into their treatment of patients. Nephrologists have been encouraged to obtain education and skills in palliative care so that they are comfortable addressing end-of-life issues with their patients, and dialysis facilities have been urged to develop protocols, policies, and programs to ensure that palliative care is provided to their patients. Also, dialysis units have been urged to develop a working relationship with local palliative care programs, so patients with ESRD who stop dialysis or patients undergoing dialysis with a nonrenal terminal diagnosis may be referred for palliative care.
Symptom Management
Pain Management
As in other patient populations, the burden of symptoms for patients undergoing dialysis is inversely associated with their reported quality of life. Pain is the one of the most common symptom reported by patients undergoing dialysis, and several studies have found that approximately 50% of these patients report pain. For most patients undergoing dialysis, the pain is musculoskeletal in origin. Smaller numbers of patients have pain related to the dialysis procedure, peripheral neuropathy, peripheral vascular disease, or carpal tunnel syndrome. Less common causes of pain include that from polycystic kidney disease, malignant disease, or calciphylaxis (calcification of cutaneous blood vessels associated with skin necrosis). Three studies have found that pain is undertreated in 75% of patients undergoing dialysis. Use of the World Health Organization (WHO) three-step analgesic ladder has been found to be effective in the treatment of pain in dialysis patients. This study and other clinical experience also suggest that application of the WHO analgesic ladder results in effective pain relief for patients undergoing dialysis, and its use has been recommended to nephrologists treating patients with ESRD; however, because their metabolites are renally excreted and active, morphine, codeine, meperidine, and propoxyphene are not recommended for use in patients with chronic kidney disease ( Table 28-1 ).
| Safe and Effective | Use with Caution | Do Not Use |
|---|---|---|
| Fentanyl | Hydromorphone | Codeine |
| Methadone | Oxycodone | Meperidine |
| Morphine | ||
| Propoxyphene |
Morphine is the best studied of the opioids used for pain management, and its most common metabolites (including morphine-3-glucuronide, morphine-6-glucuronide, and normorphine) are excreted renally. The clearance of these metabolites therefore decreases in renal failure. Morphine-6-glucuronide is an active metabolite with analgesic properties and the potential to depress respiration. Morphine-6-glucuronide crosses the blood–brain barrier and may have prolonged central nervous system effects because, even though it may be removed by dialysis, it diffuses slowly out of the central nervous system. Morphine-3-glucuronide does not have analgesic activity, but it may cause neurotoxicity manifested by agitation, myoclonus, or confusion. Morphine is 35% protein bound, and it has intermediate water solubility. Studies suggest that morphine is dialyzable to a limited degree. Some clinicians recommend the use of morphine for patients undergoing dialysis but with a decreased dose or an increased dosing interval. A comprehensive review of the use of opioids in renal failure recommended that morphine not be used in patients with kidney disease because it is so difficult to manage the complicated adverse effects of the morphine metabolites.
Codeine is metabolized to codeine-6-glucuronide, norcodeine, morphine, morphine-3-glucuronide, morphine-6-glucuronide, and normorphine. Studies of codeine pharmacokinetics suggest that codeine metabolites would accumulate to toxic levels in a majority of patients undergoing hemodialysis. It is recommended that codeine not be used in patients with kidney failure because of the accumulation of active metabolites and because serious adverse effects have been reported from codeine use in patients with chronic kidney disease.
Hydromorphone is metabolized in the liver to hydromorphone-3-glucuronide as well as to dihydromorphine and dihydroisomorphine. Small quantities of additional metabolites are also formed. All metabolites are excreted renally. The hydromorphone-3-glucuronide metabolite does not have analgesic activity, but it is neuroexcitatory in rats. This metabolite also accumulates in patients with kidney disease. Some studies suggest that hydromorphone is removed with dialysis. It is recommended that hydromorphone be used cautiously in patients stopping dialysis. The parent drug is probably removed by dialysis, but no data exist concerning the removal of the metabolites by dialysis.
On the WHO analgesic ladder, oxycodone is recommended for treatment of both moderate and severe pain. Use of oxycodone in patients with kidney disease has not been well studied. The elimination half-life of oxycodone is lengthened in patients undergoing dialysis, and excretion of metabolites is impaired. Almost all the oxycodone metabolites are inactive. There are anecdotal reports of opioid neurotoxicity when oxycodone has been used in patients with kidney disease. Oxycodone has limited water solubility and 45% plasma protein binding, both of which suggest limited dialyzability. Oxycodone can be used with caution and careful monitoring in patients with chronic kidney disease who are undergoing dialysis.
The WHO analgesic ladder recommends the use of fentanyl for severe pain. Fentanyl is metabolized in the liver primarily to norfentanyl. There is no evidence that any fentanyl metabolites are active. Several studies have found that fentanyl can be used safely in patients with chronic kidney disease. Because 85% of fentanyl is protein bound and fentanyl has very low water solubility, it has negligible dialyzability. Fentanyl is deemed to be one of the safest opioids to use in patients with chronic kidney disease.
The WHO analgesic ladder recommends methadone for severe pain. Approximately 20% to 50% of methadone is excreted in the urine as methadone or as its metabolites, and 10% to 45% is excreted in the feces as a pyrrolidine metabolite. Studies in anuric patients have found that nearly all of methadone and its metabolites doses are excreted in the feces, mainly as metabolites. Methadone metabolites are inactive. Methadone is 89% bound to plasma proteins and has moderate water solubility. These two factors suggest that it is poorly removed by dialysis. No dose adjustments are recommended for patients undergoing dialysis. The use of methadone appears safe in patients with chronic kidney disease and those undergoing dialysis.
Opioids are often used to treat pain or dyspnea at the end of life in patients with chronic kidney disease or who are undergoing dialysis. In the setting of worsening renal function or withdrawal of dialysis, the clinician may be challenged to distinguish uremic encephalopathy from opioid neurotoxicity. Both can cause sedation, hallucinations, and myoclonus. If respiratory depression is also present, it is advisable to stop the opioid until the respiratory depression subsides. If the patient’s respiratory rate is not compromised, the opioid can usually be continued, and a benzodiazepine such as lorazepam is added to control the myoclonus. Occasionally, a lorazepam continuous intravenous infusion at 1 or 2 mg/hour is necessary to control the myoclonus.
Although nonsteroidal anti-inflammatory drugs are recommended for use in step 1 on the WHO analgesic ladder, the use of these drugs in patients with chronic kidney disease is contraindicated because of their nephrotoxicity, and their use in patients undergoing dialysis is risky because of the higher frequency of upper gastrointestinal bleeding in these patients. The use of these drugs may also cause loss of residual renal function.
The Mid-Atlantic Renal Coalition and the Kidney End-of-Life Coalition assembled a panel of international experts on pain management in chronic kidney disease and developed an evidence-based algorithm for treating pain in dialysis patients, “Clinical Algorithm and Preferred Medication to Treat Pain in Dialysis Patients,” which is accessible on the Internet.
Other Symptom Management
Because of their comorbid illnesses, patients undergoing dialysis are among the most symptomatic of any population with chronic disease. In one study of 162 patients undergoing dialysis from three different dialysis units, the median number of symptoms reported by patients was 9.0. Pain, dyspnea, dry skin, and fatigue were each reported by more than 50% of the patients. Of the 30 different symptoms reported by the patients, the 6 most bothersome (starting with the worst first) were as follows: chest pain, bone or joint pain, difficulty becoming sexually aroused, trouble falling asleep, muscle cramps, and itching.
The greater the number of troublesome symptoms reported by patients undergoing dialysis, the lower they rate their quality of life. For this reason, it is very important for clinicians who treat these patients to assess and manage symptoms aggressively. Treatment with erythropoietin therapy in patients undergoing dialysis has led to a correction of the anemia with improved quality of life, decreased fatigue, increased exercise tolerance, and improved overall general well-being. It also has been shown to improve sexual desire and performance in some, but not all, patients undergoing dialysis. Pain from muscle cramps is a common symptom among dialysis patients, especially if they undergo significant fluid removal during dialysis. Decreasing the volume of fluid removed during any given dialysis treatment may lessen cramps. For patients with chronic kidney disease who are not yet undergoing dialysis, decreasing the dose of diuretic often works to eliminate cramps. Patients need to limit their intake of fluids and salt-containing fluids to avoid worsening of edema and fluid overload if diuretic doses are decreased. Benzodiazepines may be helpful for cramps.
Pruritus, or itching, is one of the most common and frustrating symptoms experienced by patients undergoing dialysis. Secondary hyperparathyroidism, increased calcium-phosphate deposition in the skin, dry skin, inadequate dialysis, anemia, iron deficiency, and low-grade hypersensitivity to products used in the dialysis procedure have all been identified as possible contributory factors. In addition to careful management of all these factors, the following interventions have been tried for pruritus with some success: emollient skin creams; phototherapy with ultraviolet B light three times weekly; intravenous lidocaine (100 mg) during dialysis for severe, refractory itching; and thalidomide (100 mg at bedtime; must not be used in pregnant women).
Insomnia is also reported by the majority of patients undergoing dialysis. In obese patients, sleep apnea should be excluded. The patient should also be evaluated for adequacy of dialysis. Avoidance of caffeinated beverages, alcoholic drinks, and naps have all been recommended. If these measures are not effective in improving insomnia, anxiolytic/hypnotics (e.g., zolpidem) or benzodiazepines (e.g., triazolam) are generally safe in patients undergoing dialysis.
Care Planning
Advance Care Planning
Advance care planning is a process of communication among patients, families, health care providers, and other important individuals about the patient’s preferred decision maker and appropriate future medical care if and when a patient is unable to make his or her own decisions. Advance care planning has been recognized as particularly important for patients undergoing dialysis for three reasons. First, more than half of all new patients undergoing dialysis are more than 65 years old, and elderly patients are the most likely to withdraw or be withdrawn from dialysis. Second, prior discussions of patients’ wishes and completion of advance directives have been shown to help patients undergoing dialysis and their families approach death in a reconciled fashion. Third, unless a specific directive to withhold cardiopulmonary resuscitation (CPR) is obtained (which can be done within the framework of advance care planning), this treatment will automatically be provided, although it rarely leads to extended survival in these patients. For these reasons, clinicians have been encouraged to discuss with their patients the circumstances under which patients would want to discontinue dialysis and forgo CPR and to urge patients to communicate their wishes to their family verbally and through written advance directives.
The benefits of advance directives for patients and families and clinicians are twofold. First, families report that it is easier for them to make a decision to stop dialysis of a loved one if their loved one told them the health states under which he or she would not want to continue treatment. Second, patients undergoing dialysis who discuss and complete written advance directives are significantly more likely to have their wish to die at home respected.
Despite these benefits, the practice of advance care planning, including the completion of advance directives, has not been optimized for patients undergoing dialysis. First, most of these patients do not discuss or complete an advance directive, even though advance directives are particularly important for chronically ill patients with shortened life expectancy who are dependent on life-sustaining treatment for their daily existence. Dialysis units were not included in the U.S. Patient Self-Determination Act list of health care providers who were required to ask patients about completion of advance directives and also provide them with an opportunity to execute an advance directive. Second, even when patients undergoing dialysis complete written advance directives, only one third have indicated to their family the circumstances under which they may want to stop dialysis. This failure to indicate their preferences is disappointing because patients undergoing dialysis do have strong preferences about stopping dialysis and other life-sustaining treatments under certain health states. For example, fewer than 20% of patients undergoing dialysis would want to continue dialysis, have CPR, or be maintained with tube feedings or a ventilator if they had severe dementia or were in a permanent coma. Recognizing these deficiencies, the ASN, the National Kidney Foundation, the RPA, and the Robert Wood Johnson Foundation’s ESRD Workgroup on End-of-Life Care have all strongly encouraged dialysis units to provide advance care planning to patients undergoing dialysis and their families and in the process to include a discussion of health states under which patients would want to stop dialysis and other life-sustaining treatments.
In 2008, the Centers for Medicare and Medicaid Services updated the Conditions for Coverage for dialysis facilities. In these updated regulations under Subpart C—Patients’ Rights, dialysis facilities are required to inform patients about their rights to complete advance directives and the facility’s policy regarding advance directives. In this same section of the updated regulations, the conditions state that the patient has the right to be informed of his or her right to refuse treatment and to discontinue treatment.
Patients undergoing dialysis and their families view advance care planning as a way to prepare for death, relieve burdens on loved ones, strengthen interpersonal relationships, and maintain control over present and future health care. Research with patients undergoing dialysis and families shows that patients prefer to center the advance care planning process within the patient–family relationship rather than the patient–physician relationship. Clinicians who treat dialysis patients should urge them to participate in an advance care planning discussion with their families and should instruct them to tell their families and put in writing health states in which they would not want life-sustaining treatment, including dialysis.
Cardiopulmonary Resuscitation
There is a low likelihood of benefit from CPR for most patients undergoing dialysis. One 8-year study of the outcomes of CPR in a dialysis population documented an 8% survival to discharge rate after CPR. Other studies have documented similarly poor results. Despite these findings, almost 9 out of 10 patients undergoing dialysis would want to undergo CPR if cardiac arrest were to occur during dialysis or at other times. Patients who have seen CPR on television are more likely to report that they know what it is and that they want it. Because patients undergoing dialysis have an overly optimistic assessment of the outcomes of CPR, clinicians need to educate patients and their families about the risks and benefits of CPR, based on the patient’s condition, before asking patients about their preferences. Patients undergoing dialysis often have other comorbid conditions that would also indicate a poor outcome from CPR, even without factoring in the patient’s ESRD. Patients undergoing dialysis who do not want CPR are significantly older, have more comorbid conditions, and are more likely to have a living will, be widowed, and live in a nursing home. Black patients undergoing dialysis are six times more likely to want CPR than white patients receiving the same treatment. Ninety-two percent of patients undergoing dialysis who want CPR agree that patients who do not want CPR should have their wishes respected by the dialysis unit. Most important, health care professionals in dialysis units and others who care for patients undergoing dialysis need to educate them about the poor outcomes of CPR so that these patients can make an informed decision about CPR.
Dialysis Decision Making
For more than a decade, nephrologists have reported being increasingly asked to dialyze patients for whom they perceive dialysis to be of marginal benefit. At the end of the 1990s, the leadership of the RPA and the ASN assigned the highest priority for clinical practice guideline development to the topic of appropriateness of dialysis for patients. The subsequent guideline, “Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis,” was published in 2000 and provides nine recommendations for the dialysis of patients with acute renal failure and ESRD ( Box 28-1 ). In the context of an expanding dialysis program with an increasing number of patients who have substantial comorbid conditions, the nephrology leadership believed that an evidence-based clinical practice guideline that could assist patients, families, and the nephrology team in making decisions about initiating, continuing, and stopping dialysis would be timely and quite beneficial. The guideline recommendations have been widely accepted and endorsed by 10 professional organizations. In addition, the guideline has been cited in numerous publications. It helps physicians and nurses answer the question, Who should be dialyzed? The guideline recommends that shared decision making—the process by which physicians and patients agree on a specific course of action based on a common understanding of the treatment goals and risks and benefits of the chosen course, compared with reasonable alternatives—should be used in making decisions about dialysis. In most cases, the shared decision-making process results in decisions that are individualized to the patient’s particular circumstances and preferences. The guideline recognized, however, that limits to the shared decision-making process protect the rights of patients and the professional integrity of health care professionals. The patient has the right to refuse dialysis even if the renal care team disagrees with the decision and wants the patient to undergo dialysis. Similarly, the renal care team has the right to not offer dialysis when the expected benefits do not justify the risks. The guideline also recognizes that there are circumstances in which patients and renal care teams may disagree about decisions to start, continue, or stop dialysis; the guideline recommends process-based conflict resolution in these cases.
Related posts:
Stay updated, free articles. Join our Telegram channel
Full access? Get Clinical Tree
