Any review of ethical issues facing nephrology must begin with the fundamental role that nephrology played in the early development of the field of bioethics. Because dialysis and kidney transplantation predated many other organ-replacement therapies, many of the ethical issues that inevitably accompanied these highly specialized medical treatments were first addressed by nephrologists. This chapter focuses on ethical issues in the treatment of kidney failure viewed through the lens of experience in the United States—the location of many early innovations—but a global perspective reveals the additional complexity of treating patients with advanced kidney disease in differing health care systems and underresourced settings. This broader perspective is addressed briefly at the conclusion of the chapter.

In 1960, maintenance hemodialysis (also called chronic or long-term hemodialysis ) first became feasible with the invention of the arteriovenous shunt. Amid the excitement of this medical advance, nephrologists were quickly confronted by the unprecedented ethical problem of determining which patients should be granted access to this life-saving therapy that was limited by the availability of dialysis machines. Resource allocation decisions extended beyond clinical facts to include value judgments and issues of justice. One early U.S. dialysis center, the Seattle Artificial Kidney Center, invited a group of local citizens to make allocation decisions, a role that was previously well within the guarded realm of physician autonomy. Historian David Rothman and bioethics scholar Albert Jonsen heralded this engagement of the lay population as the event that signaled the entrance of bioethics into medicine.

In his 1964 presidential address to the American Society of Artificial Internal Organs, Dr. Belding Scribner, one of the early fathers of nephrology, identified four major ethical problems that he and his colleagues were facing: 1. Patient selection for dialysis; 2. Termination of dialysis, which he called “dialysis suicide” but is now referred to as “dialysis discontinuation,” “stopping dialysis,” or “withdrawing dialysis”; 3. “Death with dignity,” which involved the treatment of patients with kidney failure when dialysis was withheld or withdrawn; and 4. Donor selection for transplantation. Indeed, Dr. Scribner anticipated many of the ethical challenges that would continue to face nephrology—as well as other fields of medicine—for decades.

Ethical issues arising in treating patients with advanced chronic kidney disease (CKD) can be unpacked by applying four ethical principles: respect for autonomy, beneficence, nonmaleficence, and justice. This widely accepted framework, called principalism, is used to identify and analyze ethical problems in medicine. Fig. 80.1 presents a timeline for the relative salience of these principles throughout the history of the end-stage renal disease (ESRD) program.

Timeline of important events and publications related to the development of dialysis.

Although there is significant overlap, the relative salience of each of the four principles varies over this course. ASN, American Society of Nephrology; ESRD, end-stage renal disease; IOM, Institute of Medicine; RPA, Renal Physicians Association.

Used with permission of the American Society of Nephrology. Prior publication in the Clinical Journal of the American Society of Nephrology : Butler CR, Mehotra R, Tonelli MR, Lam DY. The evolving ethics of dialysis in the United States: a principlist bioethics approach. Clin J Am Soc Nephrol . 2016;11:704–709.

The invention of the Quinton–Scribner arteriovenous shunt offered the ability to repeatedly access a patient’s blood circulation over regular dialysis treatments, making maintenance dialysis for chronic kidney failure (vs. treatment only for acute kidney failure) feasible for the first time. When the first U.S. maintenance dialysis center, the Seattle Artificial Kidney Center in the U.S. Pacific Northwest, opened in 1962, the number of patients seeking dialysis treatment far outweighed the facility’s ability to provide it. Physicians used clinical criteria to narrow the group of potential patients to otherwise healthy adults aged 18 to 45 years, but there remained more candidates than could be accommodated and no established criteria to decide who among them would receive the life-sustaining treatment.

Health care rationing occurs when a treatment that may benefit a patient is withheld because of resource limitations. The ethical principle of justice requires distribution of societal resources in a fair, transparent, and consistent way. In an attempt to integrate public values about fair allocation into their decision-making process, the Seattle group appointed the Admissions and Policy Committee, a group of citizens who were tasked with representing the local community in selecting medically suitable dialysis candidates. The committee initially considered choosing patients by lottery but rejected this idea, believing that more ethical decisions could be made by active selection on the basis of a patient’s ability to be rehabilitated and eventually return on society’s investment in a patient’s health. Factors taken into consideration included age and gender, marital status and number of dependents, income, net worth, emotional stability, educational background, occupation, and future potential contribution. As the selection process evolved, a pattern emerged in which committee decisions weighed heavily on a narrow definition of a favorable personal character and valuable contribution to society.

Journalist Shana Alexander called national attention to the committee in her Life Magazine article, “They Decide Who Lives, Who Dies: Medical Miracle Puts Moral Burden on Small Committee.” This publicity precipitated a broader public outcry. The committee was castigated for using upper middle-class values and social-worth criteria to make life-and-death decisions. Critics wrote, “ The Pacific Northwest is no place for a Henry David Thoreau with bad kidneys.” The complex ethical structure guiding medical decision making was exposed to the public, making several points clear. First, it is unacceptable to make resource allocation or rationing decisions on the basis of social worth. More broadly, it became clear that the public has a moral stake in how clinical decisions are made.

In the 1960s, patients accepted for dialysis felt fortunate to receive a scarce therapy. When some patients started to choose to forgo this life-saving treatment, pleas to “stop the machine” were initially termed “dialysis suicide” and framed as a form of psychopathology. However, drawing on Catholic moral theology, clinicians and ethicists began to reconceptualize decisions to refuse or stop aggressive interventions such as dialysis, which represent nonobligatory extraordinary (versus ordinary) attempts to sustain life. In its 1983 report, Deciding to Forego Life-Sustaining Treatment, the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research considered ethical and legal issues raised by life-sustaining treatments such as dialysis and reached two major conclusions that provide justification for withholding and withdrawing dialysis: “The voluntary choice of a competent and informed patient should determine whether or not life-sustaining therapy will be undertaken;” and “Health-care professionals serve patients best by maintaining a presumption in favor of sustaining life, while recognizing that competent patients are entitled to choose to forgo any treatments, including those that sustain life.” Active withdrawal from dialysis now represents approximately 17% of deaths among people with kidney failure receiving hemodialysis in the United States.

Shifting regulations and clinical practice guidelines emphasized the importance of optimizing benefits and reducing harm while also respecting patients’ autonomous choice. However, the best process to develop a balance between these values and incorporate perspectives from the patient, family, and nephrologist remained opaque. Individual patients evaluate benefits and burdens differently. Some patients have limited cognitive capacity and require surrogates to support decision making. Box 80.1 provides recommendations for a systematic approach for responding to a patient request to stop dialysis. It recognizes the right of cognitively competent patients or the surrogate of patients without cognitive capacity to make this decision for themselves but, at the same time, urges a careful review for any mediating medical, physical, spiritual, and psychological factors that might be addressed to improve patients’ quality of life before deciding to stop dialysis.

Older age and medical comorbidity are now rarely perceived to be contraindications to dialysis. Far from it, as the U.S. population ages and a range of chronic conditions become more prevalent, those aged 75 years or older have become the fastest growing component of the dialysis population. Between 1996 and 2003, rates of dialysis initiation among octogenarians and nonagenarians nearly doubled. Supporting older adults in deciding whether to start dialysis involves considering factors including reduced life span, complex comorbidities, heterogeneous personal values, and varied quality of life.

Characteristics such as older age, nonambulatory status, poor nutritional status, and presence of comorbid conditions are associated with shorter life spans. Among U.S. veterans with advanced CKD, adults older than 75 years were far more likely to die than develop kidney failure in their lifetime. In multiple studies comparing dialysis with active medical management without dialysis for patients older than 75 years of age with advanced CKD, dialysis has not been associated with a survival benefit for patients with ischemic heart disease or those with the highest burden of comorbidities. ^, Older adults with advanced kidney disease and dementia may be especially unlikely to benefit from dialysis for the following reasons: 1. They may not live any longer with dialysis than without it, especially if they have other comorbidities; 2. They have a twofold higher mortality risk than those without dementia; 3. They are less likely to do well on dialysis and more likely to stop it; 4. The dialysis center is a “dementia-unfriendly” environment, and these patients may not be able to cooperate safely with the dialysis process; and 5. They experience a significant decline in cognitive function, particularly executive function, after hemodialysis initiation.

Given the unique aspects of caring for an older and multimorbid population, the Renal Physicians Association and American Society of Nephrology clinical practice guideline emphasized the importance of discussing prognosis and conducting advance care planning with older adult patients and their families to make individualized decisions. ^, These recommendations argue against an “age-neutral” approach to the management of CKD and emphasized the need for prognostic tools that enable clinicians to identify the subgroup of older adults who are most likely to benefit from dialysis. A potentially helpful prognostic tool to estimate 6-month mortality in dialysis patients considers age, serum albumin, dementia, peripheral vascular disease, and the nephrologist’s response to the surprise question (“Would I be surprised if this patient died in the next 6 months?”) Another prognostic tool was developed using the French Renal Epidemiology and Information Network and estimates 90-day mortality in patients 75 years or older who are starting dialysis and integrates risk factors including age over 85 years, cardiovascular comorbidities, cognitive disorders, active malignancy, serum albumin, and impaired mobility. Some have questioned the standard content of informed consent for dialysis and advocate for an age-sensitive approach that is attuned to the different balance of benefits and harms of the treatment for older adults with multiple comorbidities. The American Geriatrics Society has developed a structure for approaching the medical evidence base, recognizing that it is often difficult to extrapolate results from trial data to an older population. See Chapter 60 for more discussion of decision making and clinical management of older patients with CKD.

For the many patients for whom dialysis offers equivocal benefits and/or does not support their life goals, active medical management without dialysis is a viable treatment option. In a study investigating the treatment of active medical management without dialysis, older patients with advanced CKD survived a median of 15 months from the point that their eGFR reached <15 mL/min/1.73 m ² . When supported by a multidisciplinary palliative care program, these patients experienced improvement in symptom burden and half the rate of hospitalization compared with patients who started dialysis and who were on average 10 years younger. However, despite a growing evidence base suggesting that dialysis may not benefit all patients and many would prefer active medical management without dialysis, other individual and system-level forces may shape decisions to initiate dialysis.

Nephrologists, who may view their role as providing active intervention and instilling hope, may perceive medical management without dialysis to be equivalent to “no care.” These providers may implicitly or explicitly take on a paternalistic stance in which they act to support what they perceive to be a patient’s best interest. Persistent educational gaps among nephrologists about how to provide care without dialysis also act as barriers to alternative treatments. They may also be swayed by the norms and culture of their institution propelling patients toward in-center hemodialysis.

A qualitative study of documentation in the U.S. Veterans Affairs medical record for veterans with advanced kidney disease who had chosen not to start dialysis suggested that patients would be repeatedly questioned about this decision with the expectation that they were likely to change their minds. Initiation of dialysis served as a powerful default option with few perceived alternatives. Patients might experience “immense pressure” to initiate dialysis. These findings resonate with work of the medical anthropologist Sharon Kaufman, who describes the “routinization” of starting dialysis and how these practices are shaped by clinicians and societal expectations about intensive interventions as “ordinary” treatments. She reported that nephrologists may feel obligated to dialyze adult patients even if they have personal moral concerns about whether the patient is likely to benefit. The power of defaults illuminates care processes in medicine more broadly and underlines the importance of engaging patients proactively, consciously, and deliberately in care decisions.

A powerful default to initiate dialysis limits patients’ opportunity to make informed choices. To counter this default and support shared decision making, the kidney community needs to make progress in the following areas: 1. Raise awareness among nephrologists and develop a community buy-in that dialysis is not the best option for all patients and that it is the patient’s right to decide among multiple treatment options, 2. Develop a clear pathway for treating patients who opt for active medical management without dialysis that is supported by regulatory policy and sufficient compensation to clinicians, and 3. Train nephrology clinicians in communication skills so that they may confidently and comfortably engage patients in the process of shared decision making about the range of treatment options.

Shared decision making is a process in which clinicians elicit individual patient preferences, needs, and values to determine an approach to treatment that best respects these values and preferences, and it is a valuable strategy to support person-centered care. In 2012 as one of its five recommendations in the American Board of Internal Medicine’s Choosing Wisely Campaign, the ASN urged nephrologists and patients: “Don’t initiate chronic dialysis without ensuring a shared decision-making process between patients, their families, and their physicians.” The ASN embraced shared decision making as the “preferred model for medical decision-making because it addresses the ethical need to fully inform patients about the risks and benefits of treatments, as well as the need to ensure that patients’ values and preferences play a prominent role.”

Despite this recommendation, shared decision making continues to be poorly implemented into decision making about treatments for kidney failure. The SDM-Q-9 tool was developed to measure the presence and quality of shared decision making in real-world practice. The tool measures 1. whether a patient is aware of choices and the decision to be made; 2. if the patient has an opportunity to express needs, values, and preferences; 3. whether the patient is informed of associated prognosis and benefits and risks of each option; 4. use of decision aids to standardize information and facilitate understanding; 5. adequacy of time for decision making; 6. whether the patient is an active participant, and 7. whether the patient is a coequal with the physician in the treatment decision and in developing a plan of care. Participants with CKD in a study using the SDM-Q-9 commonly rated the shared decision making process as “suboptimal.”

Shared decision making can be strengthened using patient decision aids and other communication tools. Patient decision aids are intended to help patients prepare for a collaborative role in shared decision making with their providers, understand their options, clarify their personal values and apply these to potential outcomes for each option, and communicate their values and preferences to their providers. There is increasing evidence for the value of decision aids to assist patients in evaluating options for kidney failure treatment including hemodialysis and peritoneal dialysis (PD) at home or in-center, kidney transplantation, a time-limited trial of dialysis, palliative dialysis, active medical management without dialysis, or deciding not to decide about dialysis.

In light of the limited prognosis and high symptom burden for people with kidney failure, multiple leaders and institutions have emphasized the importance of integrating palliative care and advanced care planning for end-of-life care into routine kidney care processes (for further discussion on supportive care, see Chapter 61). ^, Nephrology trainees also report a sense of moral obligation to provide such care, though nephrology training programs still include limited education in primary palliative care and end-of-life care. ^,

By the 1990s, surveys suggested that 90% of nephrologists would stop dialysis at the request of a patient with decision-making capacity. ^, However, they disagreed about how to treat these patients in the absence of clear advance directives. A patient’s right to forgo dialysis was difficult to exercise in these circumstances and often overruled by a strong default to continue dialysis. For these reasons, nephrologists have been encouraged to discuss the circumstances under which patients would want to discontinue dialysis and forgo cardiopulmonary resuscitation and to urge patients to complete written advance directives. These practices are intended to better insure that approach to care aligns with patient preference and supports patient autonomy in the event that a patient is no longer cognitively able to participate in care discussion.

The Patient Self-Determination Act of 1991 required institutions participating in Medicare and Medicaid to educate patients about the importance of completing advance directives. Although the ESRD program was almost entirely funded by Medicare, dialysis units were inadvertently left out of the legislation. This was a problematic omission given that advance care planning is especially important for dialysis patients for several reasons : 1. Older adults make up about half of the dialysis population, and these patients have a relatively short life expectancy on dialysis and are the most likely to withdraw or be withdrawn from the treatment; 2. Prior discussion of advance directives has been shown to help patients with kidney failure and their families approach death in a reconciled fashion ; 3. Patients who complete advance directives are more likely to have their wish to die at home respected; 4. Cardiopulmonary resuscitation rarely extends survival for seriously ill patients receiving dialysis but is typically provided by default in the absence of a specific directive to withhold this intensive intervention.

Prognostication is a centerpiece of advance care planning discussions but notoriously difficult for clinicians. The “surprise” question identifies dialysis patients at high risk for early mortality. The odds of a patient dying within a year were shown to be 3.5 times higher if the nephrologist or nephrology nurse practitioner answered “No” than for those patients about whom the provider answered “Yes.” Targeting patients identified as seriously ill using the surprise question for goals of care discussions led to a 35% increase in complete advance care planning documentation in one study.

Even with effective communication and preparation, it is often difficult for patients to fully anticipate the impact of dialysis on their life. Planning for a “time-limited trial” of dialysis may reduce a sense of inflexible commitment to a treatment strategy when the benefit of the treatment to the particular patient is uncertain. Dialysis may be initiated with a planned reevaluation of whether goals are being met with continuation or withdrawal based on this future assessment. Patients may also reasonably prefer to decide not to decide. The “deciding not to decide” option gives older adults with kidney disease more time and space to consider bigger picture goals and preferences about how to live their lives by deferring a decision about treatment options for kidney failure with their nephrologists until a mutually agreeable time.

Dr. Scribner was prescient in 1964 when he identified patient selection for kidney transplantation as one of the major ethical problems facing nephrology. Indeed, the kidney transplant community continues to face pervasive ethical dilemmas around how to both maximize the benefit of a scarce supply of donor organs and at the same time support equitable distribution of this public resource across a population. Further, the community must determine whether and when to allow a healthy living donor to undergo a major surgical procedure without expectation of direct clinical benefit to themselves and how to respect living and deceased donors who offer the unique “gift” of a transplantable organ.

Kidney transplants can offer substantial benefits in terms of quality of life and increased longevity compared with dialysis, and many patients prefer this treatment approach. While for some patients, the risks of transplant outweigh benefits, advances in surgical technology and immunosuppressive management mean that transplant can benefit an increasingly broad swath of people with kidney failure including frail older adults and people with multiple comorbidities. ^, Transplantation also confers lower costs to the health care system compared with a lifetime of dialysis treatments. However, a shortage of deceased donor organs means that the need for transplant far outstrips available resources. In 2020, more than 130,000 people progressed to kidney failure in the United States, but there were only about 25,000 kidney transplant procedures. In this year more than 75,000 people who had been deemed appropriate candidates for transplant were on the national deceased donor kidney waiting list. After 3 years, a third of patients were still on the waitlist and another 10% had died before receiving a kidney.

In recent years, dialysis centers have reported an increasing number of patients with challenging and disruptive behavior. These behaviors may interfere with patients’ own treatment, disrupt the smooth running of the center, or affect the welfare of other patients and staff. ^, Behavior may include loud outbursts, name calling, or pulling needles in a way that endangers other patients or that threatens immediate severe physical harm to staff or another patient. In the most extreme scenarios, patients risk being discharged from a dialysis center involuntarily.

The medical community endorses strong ethical and legal obligations toward the patient who requires life-sustaining dialysis treatment. At the same time, the ethical principles of respect for patient autonomy, beneficence, nonmaleficence, and justice command an equal moral weight with respect to other patients and staff on the unit. As early as 1990, the “difficult dialysis patient” was identified as one of the top three ethical challenges facing nephrologists. In 1998 when the Renal Physicians Association and the American Society of Nephrology were developing their Shared Decision-Making clinical practice guideline, the Centers for Medicare and Medicaid Services (CMS) advocated for an entire chapter devoted to such patients ( Box 80.2 ).

Box 80.2

Strategies for Dealing with the Disruptive or Difficult Dialysis Patient

From Johnson CC, Moss AH, Clarke SA, Armistead NC. Working with noncompliant and abusive dialysis patients: Practical strategies based on ethics and the law. Adv Ren Replace Ther. 1996;3:77–86.

Strategies for Working With the Patient

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  Learn the patient’s story and seek to understand their perspective.

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  Identify the patient’s goal for treatment.

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  Share control and responsibility for treatment with the patient.

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    Educate the patient so that they can make informed decisions.

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    Involve the patient in the treatment as much as possible.

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    Negotiate a behavioral contract.

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  Appoint a patient advocate.

Strategies for Preparing the Staff

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