Ethical Considerations in the Care of Dialysis Patients: The New Paradigm

Who Should and Should Not Receive Dialysis?

The ethical question in the 1960s “Who should be dialyzed?” morphed in the 1990s into “Who should not be dialyzed?” In the 1960s, it was unthinkable that patients with diabetes or older than the age of 75 would be candidates for dialysis. In 2020, patients with diabetes constituted 45% of incident dialysis patients, and patients older than the age of 75 are the fastest-growing age group in the dialysis population. The growth of the dialysis population had far exceeded the estimates when the Medicare End-Stage Renal Disease (ESRD) Program was established by Congress in 1972.

In the 1960s, the Admissions and Policy Committee of the Seattle Artificial Kidney Center decided who received access to dialysis and lived and who was denied access to dialysis and died. The straightforward answer to the question “Who should receive dialysis?” from an ethical perspective is that patients with medical indications for dialysis for whom the burdens are likely to outweigh the benefits and who consent to dialysis should receive it. The answer becomes more complicated for a number of reasons. First, not all patients with stage 5 chronic kidney disease (CKD) and an estimated glomerular filtration rate less than 10 mL/min is certain to benefit from dialysis. There is accumulating evidence that stage 5 CKD patients older than the age of 75 with significant comorbidities may not survive any longer with dialysis than without it. The level of this evidence has risen to the point where the second edition of the clinical practice guideline Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis recommends an informed consent conversation in which patients receive information about their diagnosis, prognosis, and all treatment options before a decision about dialysis is made. Similarly, the ASN, in its Choosing Wisely Campaign, identified that one of the five things physicians and patients should question is the possible limited benefit of dialysis to certain older patients. In its Choosing Wisely announcement on April 4, 2012, the ASN stated, “Don't initiate chronic dialysis without ensuring a shared decision-making process between patients, their families, and their physicians.… Limited observational data suggest that survival may not differ substantially for older adults with a high burden of comorbidity who initiate chronic dialysis versus those managed conservatively.”

The clinical practice guideline also identified other groups of patients who should not receive dialysis: patients with decision-making capacity who, being fully informed and making voluntary choices, refuse dialysis or request that dialysis be discontinued; patients who no longer possess decision-making capacity who previously indicated refusal of dialysis in an oral or written advance directive; patients who no longer possess decision-making capacity with properly appointed legal agents who refuse dialysis for them or request that it be discontinued; and patients with irreversible, profound neurologic impairments such that they lack signs of thought, sensation, purposeful behavior, and awareness of themselves and the environment.

The guideline also recommended other patients for whom strong consideration should be given to not providing dialysis, that is, those who have a terminal illness from a non–kidney-related cause. For example, a patient who is dying from metastatic cancer for which no further chemotherapy or radiation therapy is being offered because of a low likelihood of benefit should, in most circumstances, not be started on dialysis. The potentially longer survival time that dialysis might afford is likely to be at the expense of a greatly diminished quality of life with significant pain and suffering as the cancer spreads. This same conclusion also could be reached for patients with end-stage heart or lung disease who, despite the provision of dialysis, might have severe progressive shortness of breath, pain, and a greatly diminished quality of life.

There are also patients whose medical condition precludes the technical process of dialysis because the patients are unable to cooperate with it, for example, a patient with advanced dementia who can only be restrained with great difficulty from pulling out his dialysis needles or catheter or a patient who because of severe cardiovascular instability experiences refractory hypotension during dialysis with loss of consciousness and seizures. Fortunately, the clinical practice guideline identifies these categories of patients and provides practical strategies for deciding with these patients and their legal agents about dialysis.

The publication of the first edition of the Shared-Decision Making clinical practice guideline in 2000 was in response to the report of the IOM Committee to Study the Medicare ESRD Program, which in its 1991 report recommended the development of a clinical practice guideline “for evaluating patients for whom the burdens of renal replacement therapy may substantially outweigh the benefits.” The objectives for the first and second edition of the guideline were strongly motivated by ethical considerations: synthesize available research evidence as a basis for making recommendations about starting, withholding, continuing, and withdrawing dialysis; enhance understanding of the principles and processes useful for and involved in making decisions to withdraw or withhold dialysis; promote ethically as well as medically sound decision making in individual cases; recommend tools that can be used to promote shared decision making in the care of dialysis patients; and offer a publicly understandable and acceptable ethical framework for shared decision making among health care providers, patients, and their families. Table 63.2 presents the recommendations in this guideline.

Since the publication of the second edition of the clinical practice guideline in 2010 and the ASN Choosing Wisely recommendations in 2012, there have been additional major studies confirming the previous recommendations and documenting that older patients starting dialysis in the hospital undergo significantly higher intensity of treatment and shortened survival times with a high percentage of remaining life spent hospitalized. Noteworthy also is the accumulating evidence that older patients with CKD, especially those 75 or older, with a high burden of comorbidities and poor functional status who opt for medical management without dialysis may have a life expectancy and quality of life comparable to those who initiate dialysis therapy.

On What Basis Should Decisions About Kidney Replacement Therapy and Modality Be Made?

The clinical practice guideline and the ASN Choosing Wisely Campaign recommend a shared decision-making approach for making decisions about dialysis. Shared decision making is the recognized preferred model because it addresses the ethical need to fully inform patients about the risks and benefits of treatment, as well as the need to ensure that a patient's values and preferences play a prominent role. In shared decision making, the nephrologist is the expert in the patient's diagnosis, prognosis, and treatment alternatives, and the patient is the expert in their own history, values, and goals. In the process of shared decision making, physicians and patients reach an agreement on a specific course of treatment and share responsibility in the decision based on an understanding of the patient's overall condition and values. Shared decision making is appropriate for making decisions about starting, continuing, and stopping dialysis. Shared decision making achieves the goal of the IOM's 2001 report Crossing the Quality Chasm: A New Health System for the 21st Century by facilitating individualized, patient-centered care. The IOM defined “patient centered” as “providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions.” In fact, shared decision making has been described as the “pinnacle” of patient-centered care. Unfortunately, data from numerous studies of dialysis patients performed between 2006 and 2013 show that shared decision making has been poorly integrated into the process of dialysis initiation for many patients. There is the expectation that dialysis decision making will improve as the recommendations of the ASN and RPA are implemented through the use of decision aids incorporating decision science.

When Should a Time-Limited Trial of Dialysis Be Used?

Time-limited trials of dialysis are specifically recommended when the benefit to a particular patient of dialysis is uncertain. The nephrologist may recommend dialysis, and the patient may be hesitant to begin it, or the opposite situation may be the case in which the nephrologist doubts the benefit of dialysis to the patient but the patient or the patient's family requests that dialysis be initiated. In both of these situations, a time-limited trial of dialysis may promote more informed shared decision making and help to resolve conflict about the dialysis decision. Both the nephrologist and the patient (or the patient's legal agent if the patient lacks decision-making capacity) will see how the patient tolerates dialysis and if the patient's overall condition improves with it. Before a time-limited trial of dialysis is begun, the length of the trial and the parameters to be assessed during and at the completion of the trial should be agreed upon so that at the conclusion of the trial, the decision about whether dialysis should be continued can be reached according to the predefined parameters ( Table 63.3 ). Interestingly, in a 2005 survey of the RPA nephrologist membership, nephrologists who had been in practice longer and who were knowledgeable of the RPA and the ASN Shared-Decision Making guideline published in 2000 reported greater preparedness to make end-of-life decisions and use time-limited trials of dialysis. At the initiation of a time-limited trial, it is important for the nephrologist to specify that if the predetermined outcomes are not achieved, dialysis will be stopped, and the focus of the patient's care will be changed to intensive palliative care in which the goal will be the patient's comfort. Depending on the patient's condition, a transition to hospice may be appropriate.