INTRODUCTION — When dialysis was first invented, ethical considerations often pertained to the distribution of limited dialysis-related resources [1]. However, the near-universal availability of dialysis has allowed the nephrologist to prescribe it in every patient in whom it might be indicated. With an increase in frailer patients who have multiple comorbidities, ethical considerations have shifted to deciding when dialysis initiation is appropriate or when withdrawal of dialysis is indicated [1,2]. Not every patient derives equal benefit from kidney replacement therapy.
There are several ethical challenges and deficits in the provision of care to patients with end-stage kidney disease (ESKD), particularly around decisions to initiate or maintain dialysis or to pursue conservative (non-dialysis) kidney management (CKM). A few such deficits and challenges include: an inadequate understanding of the ethical and legal requirements around informed consent and initiation of dialysis; inadequate training or modeling of these conversations; a level of discomfort in having these conversations; and a perception that prognostic data are insufficient to make clear recommendations [3].
The general ethical issues surrounding decisions for dialysis versus CKM and for withdrawal of dialysis will be discussed in this topic. Other related topics are presented elsewhere:
●Indications of and a practical approach to withdrawal of dialysis. (See "Kidney palliative care: Withdrawal of dialysis".)
●Identifying ideal candidates for and providing care to patients who choose CKM. (See "Kidney palliative care: Conservative kidney management".)
●The principles and core components of kidney palliative care. (See "Kidney palliative care: Principles, benefits, and core components".)
ETHICAL FRAMEWORK IN DECISION-MAKING
Ethical principles — Decisions involving dialysis, particularly among end-stage kidney disease (ESKD) patients who are suboptimal candidates for it, involve several ethical principles collectively called principlism [4]. (See "Ethical issues in palliative care", section on 'Applying principlism in palliative care'.)
Principlism is composed of four principles: autonomy, beneficence, nonmaleficence, and distributive justice.
●Autonomy – Respecting autonomy means ensuring the informed patient's right to participate in medical decision-making. Patient autonomy is central to modern American biomedical ethics [5].
●Beneficence – The principle of beneficence mandates that clinicians act in the best interests of their patients.
●Nonmaleficence – The principle of nonmaleficence is the instruction for doctors to first do no harm.
●Distributive justice – Justice requires that all people be treated well and fairly and also that health resources be used equitably.
Obtaining informed consent — Respect for individual autonomy mandates informed participation in medical decision-making and informed consent to proceed with any treatment plan. The legal and ethical requirements for a valid informed consent to treatment, whether that is dialysis, withdrawal from dialysis, or conservative kidney management (CKM) are described below [3].
The elements of consent are:
●The patient should have decision-making capacity that is assessed in relation to the specific decision being made. This consists of three components:
•Understanding the information
•Retaining that information
•Reasoning to reach a final decision
A common clinical situation where difficulty with capacity may occur is when the patient is drowsy or confused due to uremia.
●Consent must be an informed one, with information provided in an understandable manner. In the context of dialysis, this involves:
•The nature of dialysis.
•Risks and benefits associated with dialysis.
•Alternatives to dialysis such as CKM or withdrawal from dialysis if chronic dialysis has already been initiated.
●Consent should be given voluntarily, without undue influence.
●Consent must cover the treatment given.
●Clinicians should provide a treatment recommendation taking together patients' values and preferences and their medical condition and prognosis. The treatment recommendation is then authorized in the signing of a consent form.
A patient may relinquish his or her right to give informed consent to a clinician or a family member, only if this waiver is informed, reasoned, and voluntary [6].
Contemporary nephrology practice in gaining an informed consent to dialysis falls short of these ethical and legal requirements. In one study of older hemodialysis patients, most were found to lack sufficient understanding of their clinical circumstances to provide adequate informed consent to dialysis [7]. In another study, only 2 of 43 patients interviewed perceived that the initiation of dialysis was their decision [8]. In fact, neither the patients nor the 18 health care providers explicitly chose to start or continue dialysis, but rather stated that it was the default treatment and "just happened." Nephrologists described framing the need for dialysis in terms of "when you [the patient] will need to start dialysis" not "if [you want to start dialysis]." Similarly, in a third study of 295 dialysis patients, 61 percent of patients reported some regret around the decision to start dialysis. A majority of these patients (52 percent) reported choosing dialysis in accordance to the clinician's recommendation, while others (14 percent) chose it as per their family's wish [9].
Resolving disagreements — Patient autonomy may compete with other principles and moral considerations regarding a treatment decision, such as initiation of dialysis. Disagreements more commonly surface when the patient or their surrogate requests a treatment that the clinician believes to be suboptimal or not indicated. While focusing on patient-centered care and shared decision-making, the clinician must find a balance between preserving patient autonomy and the ethical principles of beneficence, nonmaleficence, and distributive justice. As examples, in situations where there is limited availability of dialysis treatments, the clinician must address how to fairly allocate this resource among patients who could benefit, or in situations where the patient has a specific goal (ie, waiting until the birth of a grandchildren), treatment modifications that would otherwise not be indicated may be undertaken. In addition, clinicians may choose to seek an ethics consultation.
There is no universal theory or method for resolving disagreements regarding clinical decisions between the patient and the clinician. The following four aspects of the clinical decision should be reviewed with the patient or surrogate decision-maker to ensure that it is informed and ethically justified [4]:
●Medical indications – Available treatment options should be discussed with the patient and family, with a focus on risks, benefits, and prognosis. The goal of the therapy should be to promote the patient's wellbeing (beneficence) while avoiding the imposition of greater potential harm (nonmaleficence).
In the context of ESKD, this involves providing information about the anticipated trajectory of the patient's disease with and without dialysis and about the impact of dialysis on the life of the patient. This can include mention of details of a dialysis patient's routine and schedule, need for regular monitoring, changes in lifestyle, changes in diet, increased symptom burden and complications associated with dialysis, such as post-dialysis fatigue, intradialytic hypotension, cramping, issues of vascular access, and the heightened risk of sepsis. There is no legal or ethical requirement for a nephrologist to offer dialysis to patients who are unlikely to benefit from the treatment [3].
In a study of maintenance dialysis patients, nearly 70 percent reported that the risks and burdens of dialysis had never been mentioned prior to commencing dialysis and only 1 percent of patients recalled the option of CKM being discussed [10]. Additionally, in a national survey of 105 United States adult nephrology fellows, nearly one in five stated they felt obligated to offer dialysis to every patient regardless of benefit [11].
●Patient preferences – Identification of a patient's values, wishes, and overall care goals is required in order to develop a congruent treatment plan that focuses on upholding patient autonomy. The clinician must ensure that the patient fully understands realistic treatment outcomes that are most important to them. Most patients perceive dialysis as having unrealistic benefits, which is not the case, especially among older and frailer patients [9,12]. Patients should be engaged in advance care planning (ACP) to ensure that care remains aligned with their preferences and goals should they lose decision-making capacity. (See 'Advance care planning and advance directives' below.)
●Quality of life – In order to uphold the ethical principles of nonmaleficence and beneficence, the clinician must describe the potential effects that the treatments, dialysis or conservative management, will have on quality of life, symptoms, functional status, emotional health, and cognitive function. (See 'Education and communication with the patient' below.)
This is particularly relevant for patients with ESKD who have a poor prognosis with dialysis, such as those with frailty, significant comorbidities, and chronic malnutrition. Thus, for such patients in whom dialysis is anticipated to cause more harm than good, the nephrologist should have a detailed discussion with the patient and favor CKM over dialysis [3].
●Contextual features – Contextual features are nonclinical factors that may serve as potential influencers or barriers to a patient's decision-making ability. These may include religion, financial factors, cultural beliefs, past experience with the medical system, and possible system resource constraints (distributive justice).
In addition to using the guidance of these ethical principles, clinicians sometimes obtain an ethics consultation. As an example, in one study, ethics consultation was sought in approximately 3 percent of over 28,000 patients who had an estimated glomerular filtration rate <15 mL/min/1.73 m2 and were not yet on dialysis [1]. Common reasons for such a consultation included ethical concerns regarding appropriateness of dialysis therapy (55 percent), other invasive procedures (41 percent), and noninvasive treatments (61 percent). These situations resulted from a lack of consensus about treatment preferences (79 percent of the time), lack of clarity on who had authority to make health care decisions (56 percent of the time), or other conflicts (11 percent of the time). Ethics consultation resulted in fewer patients initiated on dialysis and more patients discontinuing dialysis.
EDUCATION AND COMMUNICATION WITH THE PATIENT
Importance of communication — A discussion of the individual's prognosis with dialysis treatment and their prognosis with conservative kidney management (CKM) should take place so that the patient (or health care proxy [HCP]) can make a well-informed decision regarding their preferred course of treatment. The vast majority of patients with advanced chronic kidney disease want to be given as much information as possible, good or bad, including prognosis [13]. Patients expect that this information will be given to them without needing to prompt the nephrologist [13]. However, this often does not occur. In one study, many patients described feeling a sense of resignation to dialysis, especially when the nephrologist framed the decision as choosing between life and death [14]. (See "Overview of the management of chronic kidney disease in adults", section on 'Preparation for and initiation of kidney replacement therapy' and "Kidney palliative care: Conservative kidney management", section on 'Offering CKM'.)
Among patients who are near the end of life, the nephrology team can play a major role in helping the patient have a peaceful death by opening lines of communication and encouraging advance care planning (ACP). In one study, for example, the majority of patients (approximately 70 percent) wanted to have these conversations with their nephrology team (nephrologist or nephrology nurse); a smaller proportion wanted to have these conversations with their primary care doctor [9]. The recognition of patients' fears and concerns will stimulate an open discussion, make it easier to converse about the end of life, and help decide whether to forego or withdraw dialysis. Data from patients with cancer suggest that such in-depth conversations about end-of-life preferences may improve the quality of death and enhance caregiver wellbeing [15].
Discussions surrounding life-sustaining measures such as cardiopulmonary resuscitation (CPR), mechanical ventilation, and end-of-life care occur infrequently among patients with end-stage kidney disease (ESKD). In one study, less than 10 percent of predialysis and dialysis patients reported having end-of-life care discussions with their nephrologist [9]. Similarly, in another study, only 30 percent discussed CPR or mechanical ventilation, 10 percent discussed end-of-life care, and 10 percent discussed palliative care with their nephrologist [16]. Patients rated the end-of-life care discussions by their nephrologists poorly, even though they rated their general communication skills high. This is despite the fact that the majority of these patients had clear preferences on CPR and site of death [16].
The experience and comfort of nephrology providers to have difficult conversations regarding end of life, including treatment preferences for patients who forgo dialysis, will vary. A qualitative study identifying themes found during clinical encounters with patients who elected conservative management of kidney disease highlighted that many providers still default to dialysis as "the norm". The clinicians often questioned competency of patients when they chose conservative management, and sometimes ended their therapeutic relationship with the patient because of the clinician's belief that they have little else to offer [17]. Nephrologists often circumvent discussions about end of life, sometimes attributing their actions to prognostic uncertainty [18]. Lack of education in end-of-life care during nephrology training has been well described and likely contributes to the lack of communication skills in such a setting [19]. Dedicated and formal training has been shown to be effective in building this communication skill set [20].
Patients' tend to overestimate prognosis and their prognostic estimation is associated with their treatment preferences. In one study of seriously ill patients undergoing hemodialysis, patients significantly overestimated their survival relative to their nephrologists [12]. Most patients (81 percent) thought that they had a 90 percent chance of survival at one year. However, their nephrologists thought only 25 percent of those same patients would survive that long. Only 6 percent of patients thought that they had less than a 50 percent chance of being alive in five years, whereas nephrologists estimated that this was true in more than one-half of those patients. Of the patients with optimistic views of prognosis, 44 percent preferred life-extending treatment. Another 54 percent of patients preferred care focused on improving quality of life over quantity if they were to become seriously ill. Similarly, in another study of predialysis and dialysis patients, only 18 percent understood their likelihood of clinical deterioration over the following 12 months [9]. Thus, it is important for the nephrologist to effectively communicate their prognosis.
Nearly one-half of the nephrology trainees in one study lacked knowledge of the mortality rate among dialysis patients [19].
Cultural and religious considerations — The field of medical ethics is predominantly a product of Western culture, and as such, is typically bound by Western perspectives. People with different cultural backgrounds may not share many of the assumptions implicit in a Western autonomy-based approach to bioethical deliberation. The effectiveness of this ethical framework may, therefore, be limited in the face of issues that are linked closely to different cultural perspectives [2]. Given the high prevalence of ESKD in many underrepresented ethnic groups, a culturally sensitive approach to these challenging medical decisions and ESKD care is necessary. However, not all individuals of a particular culture may subscribe to the beliefs commonly held by others within their community. Thus, it is essential to have a spirit of inquiry about the patient's personal beliefs and preferences regarding their care rather than making assumptions based upon their culture.
Cultural beliefs and previous experiences with the health care system may impact decisions regarding medical treatments. In one study that evaluated survival and dialysis discontinuation of ESKD patients hospitalized for stroke, lung cancer, dementia, or failure to thrive, mortality was lower and dialysis discontinuation less frequent among Black American, Hispanic American, and Asian American patients compared with White American patients [21]. Following hospitalization with stroke, for example, 28 percent of White American patients discontinued dialysis as compared with 14 percent of Black American patients, 15 percent of Hispanic American patients, and 14 percent of Asian American patients. Simulation analyses performed showed that survival differences across ethnic groups were due to differences in the rate of dialysis discontinuation, rather than to differences in underlying health status. The potential factors that may explain this difference in survival across ethnicities include differences in coping responses, expectations of care, family relationships, interpersonal support, religious beliefs, education regarding treatment options, and trust in providers. In another study, compared with other ethnic groups, Black American patients with ESKD had a lower rate of choosing "Do Not Resuscitate (DNR)" as part of their health care plan [22].
There are tremendous cross-cultural differences in decision-making models, often reflecting underlying differences in the importance or interpretation of autonomy. The Western principle of autonomy implies that every individual has the right to self-determination. However, some cultures are characterized by strong communal relationships where value is placed on interconnectedness and social relationships, rather than individualism [23]. As an example, Chinese Canadian individuals have been described as valuing a "relational-autonomy," attributed to traditional Chinese culture, where the family functions as both the collective decision-maker and the conduit for moral, religious, and social norms [24]. This family-centered model of decision-making may also operate commonly in other cultures [21,25]. Similarly, Hindu and Sikh bioethics have been described as primarily duty-based, with the person not seen as autonomous, but rather as intimately integrated with their family and community [26].
On the other hand, Canadian Indigenous people, for example, have been described as traditionally believing that all are entitled to make their own decisions but offer yet another approach to autonomy that includes respect for interpersonal relationships and noninterference [27]. This high degree of respect for personal independence means that advising, persuading, or instructing is "undesirable" [28]. Yet, despite the importance of noninterference, the value placed on interpersonal relationships may cause many Canadian Indigenous patients to prefer that family members be highly involved in medical decision-making [29].
Cultural beliefs surrounding the meaning of illness can further complicate ethical decision-making, especially at the end of life. As an example, some Native American persons prohibit explicit references to dying; positive thinking is felt to promote health, while giving bad news may be viewed as disrespectful [30]. This can make it difficult to discuss prognosis; family members may discourage clinicians from delivering bad news, and instead, prefer intervening to communicate prognostic information themselves in a way that balances hope with the bad news. Health care providers should understand that this may be appropriate in some contexts [31].
Health care professionals should recognize the diversity of beliefs and practices within cultural groups. The process of acculturating to Western life may complicate this and many patients will hold blended cultural perspectives. Health care professionals, therefore, must be careful not to use information about preferences of a cultural group to assume the preferences of an individual who is from that cultural group.
How to communicate — There are several well-accepted protocols for communicating the prospects of a bad outcome to patients. Such an encounter has two distinct components: imparting information to the patient; and participating in a therapeutic dialogue in which the clinician listens to and responds to the patient's reaction to "bad news." When imparting information, the clinician should integrate plain language with the technical to make the information clear and understandable to the patient. In addition, clinicians should give patients and their caregivers time to carefully understand their options, talk to their loved ones, and have continued discussions with their health care providers.
A communication framework, SPIRES (setup, perceptions and perspectives, invitation, recommendation, empathize, summarize and strategize), can be utilized for dialysis-related decision-making [32].
●Setup – Setup involves reviewing pertinent medical information about the patient, discussing the case with other involved clinicians, and estimating the patient's prognosis with the available treatment options. The clinician should assess the patient's decision-making preferences. This involves asking the patient how they want decisions to be made about their health care and if they are comfortable participating in the conversations, who they want to include in these discussions, and who is the person they most trust to help make medical decisions if they are unable to do so. To assess if the patient is ready to discuss their options, one can use an opening dialogue such as: "I think it is important to think about what you want if your kidney disease gets worse and what next steps could be. Is it okay if we discuss this today?"
●Perceptions and perspectives – Patient perceptions regarding their kidney disease and its potential treatments should be elicited. This can be achieved by asking questions such as: "I know you have seen many doctors in the past; can you share with me what you have heard about your kidney disease?" or "What are some outcomes you hope to achieve by treating your kidney disease?"
During this step, the clinician should also explore the patient's beliefs, values, and preferences, including big picture goals [33]. The clinician may also ask, "What makes your life worth living?", "What is most important to you?", “How can we best care for you?", "What kinds of support would be helpful to you and your family?", or "What worries you most about the future?"
●Invitation – After understanding and identifying the patient's overall goals and values, the clinician should determine what other information the patient may find helpful in discussing their care. The clinician can invite the patient to request more information or to ask for clarification. During this time, the clinician can also request permission from the patient to share a medical recommendation. As an example, it may be helpful to ask: "I understand what is most important to you. Would you like to hear what treatment I think would fit best with your overall goals?” or "Would it be helpful to hear how people like you do on dialysis?"
●Recommendation – After the patient accepts the invitation, the clinician can then make a recommendation regarding treatment. It is during this step that prognosis is communicated to the patient.
●Empathize – It is very likely that a patient or family will have an emotional response to the information being discussed. It is essential to acknowledge and empathize with these emotions. Suppressing such emotions limits the ability of the patient or family to understand what the clinician is saying or to make decisions moving forward.
●Summarize and strategize – At the end of the patient encounter, the clinician should summarize the discussion and assess what the patient understood. As an example, the patient can be asked, "What will you tell your (fill in name of friend or relative) about what we discussed today?"
It is also important to establish a plan of care or strategy for the future during this step. The patient should be offered continued support by the clinician. Patients like to hear that there is a future and an open line of communication with the clinician.
If the individual is mentally competent, the clinician's primary responsibility is to the patient. The family's opinions and feelings are important, but they should never supplant the patient's desires. The family can have desires that are identical to, entirely different from, or asynchronous (the same but with a different timeframe) as that of the patient.
If the individual is not mentally competent and is unlikely to regain cognitive function, the nephrologist and other health care providers should use previously completed advance directives to guide discussions with health care proxies in order to honor the patient's previously expressed wishes. If there is no advance directive or HCP and there is no anticipated benefit to dialysis, then the clinician does not necessarily have an ethical or legal obligation to provide dialysis. The clinician should discuss this explicitly with the family and advocate for dialysis withdrawal or CKM. Spiritual, religious, and cultural issues must be considered when discussing potential benefits and harms of treatment options. (See 'Cultural and religious considerations' above and "Kidney palliative care: Withdrawal of dialysis", section on 'Patients without decision-making capacity'.)
ADVANCE CARE PLANNING AND ADVANCE DIRECTIVES — Patients with end-stage kidney disease (ESKD), and their surrogate decision-makers, should be engaged in advance care planning (ACP), including discussion of advance directives [34]. ACP and advance directives improve patients' perceived quality of communication and reduce their decisional conflict [35,36]. ACP helps surrogate decision-makers by improving their understanding of patient goals and preferences for future medical decisions [35,37-40], by increasing their decision-making confidence [39], and by reducing their anxiety, distress, and bereavement adjustment [15,37]. (See "Advance care planning and advance directives".)
Prevalence and quality — Many patients with ESKD lack a completed advance directive or adequate ACP conversations [9,41,42]. In particular, only a small minority have advance directives that mention dialysis or dialysis management at the end of life [42]. The majority of ACP discussions are inadequate to prepare ESKD patients for dialysis and for informing preferences regarding end-of-life care [14]. There is concern that among patients who do have an advance directive, the stated wishes do not align well with their goals of care [9]. In a survey of United States dialysis patients, for example, most patients (84 percent) indicated that they would want CPR, of which many (75 percent) would also want mechanical ventilation [43]. However, when values about their future care were explored, only a fraction (23 percent) of those who wanted CPR valued life prolongation; approximately one-half of the patients (43 percent) valued comfort.
Benefits — ACP aims to ensure that patients receive care that is consistent with their wishes. However, current ACP practices may be inadequate to achieve these goals in patients with ESKD [44-46].
Among patients with ESKD, ACP discussions that provide timely and appropriate information can positively enhance patients' hope by helping them imagine possibilities for a future that are consistent with their values and preferences [47]. Most patients welcome these discussions when clinicians introduce them [48-53]. ACP increases the likelihood that patients receive care in accord with their wishes, although data are limited [35,37].
Advance directives in patients with ESKD may contribute to peaceful deaths [48,54,55]. This may partially be mediated through enhancement of close family relationships. In one study, the presence of a close relationship with a spouse or spousal equivalent was associated with the presence of an advance directive [55], which in turn correlated strongly with withdrawal from dialysis, resulting in deaths that were all reconciled and peaceful [55].
ACP may result in lower health service use and lower costs, although data are limited. In one observational study, patients who had a treatment-limiting advance directive and a documented surrogate decision-maker had a lower frequency of hospitalization, intensive care unit admission, intensive procedures, and in-patient death compared with patients lacking both components of the advance directive [42]. Hospice use and withdrawal of dialysis were also higher in these patients.
Components — ACP is an evolving process in which patients, their families or loved ones, and their health care providers reflect on the patient's goals, values, and beliefs; discuss how they should inform current and future medical care; and ultimately use this information to accurately document their future health care choices. This is ideally done after an exploration of the patient's, loved-ones', and caregivers' knowledge, fears, hopes, and needs [56,57]. ACP components include treatment directives, appointment of a health care proxy, and Physician Orders for Life Sustaining Treatment (POLST), sometimes called Medical Orders for Life Sustaining Treatment (MOLST). These are discussed in detail elsewhere. (See "Advance care planning and advance directives", section on 'Specific documents for health care decision-making'.)
Practical considerations in ESKD — Opportunities to initiate ACP are lost if the process is delayed until a patient's medical condition deteriorates enough to need an advance directive. Health care providers should encourage patients to engage in ACP early in their illness trajectory and to have ongoing conversations as their health evolves. Among patients with ESKD, medical crises occur frequently. It may not be optimal to engage patients in ACP during such crises. This is because patients may be emotionally or medically incapable of weighing the benefits and burdens of various treatment options and are more likely to defer decision-making to their clinician or family. In addition, uremia can limit a patient's ability to participate meaningfully in ACP, as can dementia, a common comorbidity among patients with ESKD. Moderate to severe cognitive impairment is common and often undiagnosed in dialysis patients [58].
The majority of patients lack decision-making capacity by the time the decision to withdraw dialysis is made [59], and without ACP, families and clinicians may inaccurately predict patients' wishes regarding dialysis. As examples, in two studies in which hypothetical clinical scenarios were presented, families and clinicians consistently overestimated patients' desires for dialysis [60,61].
Patients should, therefore, identify a surrogate decision-maker who can help them make decisions or make decisions on their behalf, when necessary. This is especially important to have established ahead of time among patients in whom withdrawal of dialysis is being considered [34]. (See "Kidney palliative care: Withdrawal of dialysis".)
Although patients with ESKD typically want to engage their health care providers in ACP, there will be patients who prefer to have these conversations with loved ones outside of the patient-clinician relationship. However, the health care team can help initiate and facilitate these conversations. Many patients are unsure how to initiate ACP conversations with loved ones, fearing that family may be upset by the process or uncomfortable with the topic. This is especially of concern when withdrawal from dialysis or choosing conservative kidney management versus dialysis is being considered. These patients often express feelings of isolation and hopelessness when they are not able to honestly and openly discuss their hopes and fears for the future [53].
Barriers — The nephrology community has not aggressively promoted ACP or developed uniform educational policies in their dialysis units. Significant system-level barriers exist and serve to complicate the promotion of ACP among patients with ESKD [62]. These barriers include: the complex and fragmented medical care delivered to this population across clinicians and settings over time; the lack of a shared vision and understanding of ACP; the lack of a defined responsibility for ACP; and the lack of communication and collaboration among clinicians caring for dialysis patients [62].
One of the most significant barriers may be lack of clinician intervention to initiate and guide ACP discussions. Clinicians often feel they lack sufficient time and training to have these conversations and express fear around upsetting patients [11,19]. However, in reality, the majority of patients with ESKD are comfortable discussing end-of-life issues with their family or clinicians and welcome these discussions when they are introduced [53,63,64]. In fact, patients with ESKD typically expect their nephrologists to initiate such conversations and are less concerned than clinicians that these conversations will damage hope [13,47,53]
SUMMARY AND RECOMMENDATIONS
●There are several ethical challenges and deficits in the provision of care to patients with end-stage kidney disease (ESKD), including: an inadequate understanding of the ethical and legal requirements around informed consent and initiation of dialysis; inadequate training or modeling of these conversations; a level of discomfort in having these conversations; and a perception that prognostic data are insufficient to make clear recommendations. (See 'Introduction' above.)
●Decisions involving dialysis, particularly among ESKD patients who are suboptimal candidates for it, involve several ethical principles collectively called principlism. Principlism is composed of four principles: autonomy, beneficence, nonmaleficence, and distributive justice. (See 'Ethical principles' above.)
●Respect for individual autonomy mandates informed participation in medical decision-making and informed consent to proceed with any treatment plan. The legal and ethical requirements for a valid informed consent to treatment, whether that is dialysis, withdrawal from dialysis, or conservative kidney management (CKM) include (see 'Obtaining informed consent' above):
•The patient should have decision-making capacity that is assessed in relation to the specific decision being made. This consists of three components:
-Understanding the information
-Retaining that information
-Reasoning to reach a final decision
•Consent must be an informed one, with information provided in an understandable manner. In the context of dialysis, this involves:
-The nature of dialysis.
-Risks and benefits associated with dialysis.
-Alternatives to dialysis such as CKM or withdrawal from dialysis if chronic dialysis has already been initiated.
•Consent should be given voluntarily, without undue influence.
•Consent must cover the treatment given.
•Clinicians should provide a treatment recommendation taking together patients' values and preferences and their medical condition and prognosis. The treatment recommendation is then authorized in the signing of a consent form.
●Disagreements commonly surface when the patient or their surrogate request a treatment that the clinician believes to be suboptimal or not indicated. In such situations, the clinician should ensure that the decision is informed and ethically justified by reviewing with the patient and the surrogate: the medical indication, patient preferences, quality-of-life impact, and contextual features of the decision. (See 'Resolving disagreements' above.)
●A discussion of the individual's prognosis with dialysis treatment and CKM has two distinct components: imparting information to the patient; and participating in a therapeutic dialogue in which the clinician listens to and responds to the patient's reaction. The clinician should integrate plain and technical language to make the information clear and understandable to the patient, while recognizing the diversity of health-related beliefs and practices within cultural groups that might apply to the patient. (See 'Education and communication with the patient' above.)
●In order to prepare for future uncertainties, advance care planning (ACP) should be undertaken for patients with ESKD early in their illness trajectory and while cognitively unimpaired, with ongoing conversations as their health evolves. ACP and advance directives have several benefits for the patient and the surrogate decision-makers. (See 'Advance care planning and advance directives' above.)
ACKNOWLEDGMENTS — The UpToDate editorial staff acknowledges Tony Dash, MD, and Lionel U Mailloux, MD, FACP, who contributed to earlier versions of this topic review.
