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Kidney palliative care: Withdrawal of dialysis

Kidney palliative care: Withdrawal of dialysis
Literature review current through: May 2024.
This topic last updated: May 12, 2023.

INTRODUCTION — The decision to withdraw dialysis frequently confronts nephrologists. Such decisions may be intertwined with complex ethical, psychosocial, and cultural issues. These issues are driven by increasing awareness of the importance of end-of-life decisions among patients and health care providers. There is also recognition of the need for a balance between burden and benefit of dialysis in a patient population that is becoming older with a greater burden of comorbidity [1-3].

Withdrawal of dialysis means the discontinuation of maintenance dialysis. This is distinct from conservative kidney management (CKM), an alternative to dialysis for patients with advanced chronic kidney disease who have not initiated kidney replacement therapy. CKM is the appropriate treatment for patients with stage 5 chronic kidney disease (ie, estimated glomerular filtration rate [eGFR] <15 mL/min/1.73 m2) who are unlikely to meaningfully benefit from kidney replacement therapy, and provides non-dialytic care that emphasizes shared decision-making, quality of life, and symptom management. Clinical aspects of CKM are discussed elsewhere. (See "Kidney palliative care: Conservative kidney management".)  

A clinical approach to dialysis withdrawal is discussed here. A review of the general ethical issues involved and palliative care in patients with kidney failure are presented separately. (See "Kidney palliative care: Ethics" and "Kidney palliative care: Principles, benefits, and core components".)

EPIDEMIOLOGY — Withdrawal from dialysis is common, and in resource-abundant countries is one of the leading causes of death in patients with end-stage kidney disease (ESKD) [4-9]. Globally, rates of dialysis withdrawal have been increasing [3,10,11]. In the ESKD population in the United States in 2020, withdrawal from dialysis was the second most common cause of death after cardiovascular disease [4], while in previous years it was third, following infectious disease [1,12,13]. In the United States in 2020, 17 percent of patients on hemodialysis and approximately 16 percent of patients on peritoneal dialysis withdrew from dialysis before death [4].

Several studies have evaluated factors associated with the decision to withdraw from dialysis. Associated factors include the following:

Age – Older age is associated with the decision to withdraw from dialysis [1,3,10,11]. Patients over the age of 85 years are most likely to discontinue dialysis prior to death (34 percent) as compared with patients under the age of 44 years (11 percent) [14]. In one study from the United States and Europe, the rate of withdrawal was 8.9 per 100 person-years in patients 65 years or older versus 2.6 per 100 person-years in patients ages 50 to 64 years [10].

Race – Rates of withdrawal in White individuals tend to be higher than in Black, Hispanic, Asian American, and Indigenous individuals [1,3,14-16].

Sex – A number of studies have found that females are more likely to withdraw from dialysis compared with males [3,11,14,15]. The reasons for this difference are not well defined.

Comorbid conditions – Patients with more comorbidity and greater physical discomfort are more likely to withdraw from dialysis [14,15,17,18]. Comorbid conditions that are frequently present near the time of withdrawal include diabetic gastropathy, neuropathy, vascular access complications, neoplastic disease, neurologic deterioration, frailty, malnutrition, and increasing pain [12,19-21]. In one study, patients who withdrew from dialysis had higher rates of medical events (such as hospitalizations for sepsis or myocardial infarction) within nine months prior to dialysis withdrawal [14].

Quality of life – Patients often perceive dialysis as a major burden on quality of life [22]. Dissatisfaction with life has also been associated with withdrawal [12].

Other factors – Other factors that have been associated with dialysis withdrawal in various studies include depression, high educational level, divorced or widowed status, being on hemodialysis rather than peritoneal dialysis, region of residence, and lack of home ownership [1,7,17,19,23,24]. Societal factors may also play a role. In a European survey, withdrawal was more common if withdrawal of life-prolonging measures was considered to be acceptable, if decisions were shared, and if reimbursement for palliative care was thought to be established [25].

Clinicians and patients likely have different factors influencing their decisions regarding withdrawing dialysis. In one study, patient factors included following their "gut instinct" and weighing how the survival benefit compared with changes in quality of life on dialysis [22]. Medical providers were influenced by medical criteria and clinical experience rather than patient preferences. Medical criteria primarily included age, comorbidities, physical function, prognosis, and cognitive impairment. Clinicians reported struggling with the ethics around providing dialytic treatment to someone who they felt might not benefit; nevertheless, they tended to act to prolong life.

Another study identified system-level barriers for withdrawing dialysis that included lack of training in end-of-life conversations, expectations for aggressive care among clinicians and the general public, and financial incentives to provide dialysis in the United States [26].

INDICATIONS FOR WITHDRAWAL OF DIALYSIS — Consistent with the international Kidney Disease: Improving Global Outcomes (KDIGO) [27] and Renal Physicians Association/American Society of Nephrology (RPA/ASN) recommendations [28,29], we believe that it is appropriate to withdraw dialysis for patients in the following clinical situations [12,30]:

Patients in any state of health who have decision-making capacity and who choose to withdraw from dialysis.

Patients who have severe, continued, and irremediable pain or another source of physical or psychosocial suffering, in whom dialysis may prolong life for a short period of time but will also prolong suffering.

Hospitalized patients (especially older adults) with multiple organ system failure that persists despite intensive therapy.

Patients with irreversible mental incapacitation that interferes with their ability to understand the process, implications, risks, and benefits of dialysis in such a way that dialysis cannot be safely administered. Some examples of this include:

Patients without decision-making capacity whose advance care directives or the substituted judgment of a health care proxy dictate dialysis withdrawal. (See "Informed procedural consent in the intensive care unit".)

Patients who are unable to cooperate with the procedure of dialysis itself, are unable to react to the environment or people, or are persistently combative with family, caregivers, or staff. As an example, it is usually appropriate to withdraw dialysis from a patient in whom restraints or sedation are required during dialysis sessions.

Patients with severe and irreversible dementia.

Patients who are permanently unconscious (such as the persistent vegetative state).

Patients who have a limited life expectancy (expected death within 60 days) due to cancer, end-stage lung, liver, or heart disease, or other illnesses, which dialysis will not change.

Several validated clinical tools are available to help guide clinicians through the decision-making process, such as the Patient Health Questionnaire-9 for screening for depression, the Trail Making Test Part B to test for cognitive impairment, the modified Charlson Comorbidity Index for calculating a comorbidity score, and others [29].

ETHICAL AND LEGAL ISSUES — The principles of autonomy and of self-determination support the right of individuals with capacity to decline medical care and, therefore, withdraw from dialysis. This is consistent with the law that universally upholds a competent adult patient's right to decline medical care.

The decision to accept or decline therapy, therefore, legally resides in the patient and not with the clinician. All patients have the personal and legal right to determine what is best for them and be able to make informed decisions, including the decision to decline a life-prolonging treatment, such as dialysis [31]. The Patient Self-Determination Act (PSDA), approved by Congress in the United States to encourage completion of advance directives, supports the legality of the decision to withdraw a life-sustaining treatment (such as dialysis).

This right is based upon the presumption of informed consent, which includes (see "Legal aspects in palliative and end-of-life care in the United States" and "Ethical issues in palliative care"):

Full disclosure about the nature of the illness and all aspects of therapy options

Complete understanding of all consequences of the decision

A voluntary decision-making process without undue influence

It is also important to recognize the potential for conflicts of interest to influence clinical decision-making around withdrawal from dialysis, particularly in settings of financial interests of dialysis providers and/or nephrologists [32] or the outside interests of family members or caregivers in such decisions.

A misconception about dialysis withdrawal is that it is a form of voluntary euthanasia or assisted dying. This is erroneous. In assisted dying, the direct cause of death is an administered medication or other intervention. By contrast, the cause of death in dialysis withdrawal is ESKD, which has been allowed to proceed along its natural trajectory [33].  

CLINICAL APPROACH TO WITHDRAWING DIALYSIS — Our approach to withdrawing dialysis depends upon whether or not the patient has decision-making capacity. This is largely consistent with the Kidney Disease: Improving Global Outcomes (KDIGO) and Renal Physicians Association/American Society of Nephrology (RPA/ASN) recommendations [27-29].

Decision-making capacity or competence is defined as the patient's ability to understand their condition and alternative courses of treatment, to appreciate the consequences of their choice and to reflect on it in accordance with their own values, and to communicate their decision to others [34].

Patients with decision-making capacity — A patient's decision to stop dialysis should prompt assessment of the patient's capacity. The reasons behind the patient's decision should be explored followed by an assessment of whether they understand the outcome of their decision. The clinician should also ensure that an underlying mental health condition is not contributing to their decision.

Multidisciplinary discussion to verify intent — When a patient expresses interest in withdrawing from dialysis, we engage them in a multidisciplinary discussion to clarify their understanding of withdrawal from dialysis and to verify their intent [35]. This multidisciplinary team generally includes the patient's family members and caregivers (including health care proxy), the nephrologist, dialysis nurses, the social worker and, sometimes, the clergy.

Such a multidisciplinary discussion is essential to ensure that the patient is fully informed, to understand the patient's unique circumstances that led them to choose withdrawal from dialysis, and to address any potential remedial factors contributing to the decision (eg, treatable pain or depression). Some patients consider withdrawal because of irremediable factors such as chronic debility, repeated dialysis access failures, and loss of limbs and eyesight (related to other underlying conditions). However, other patients may contemplate withdrawal because of potentially reversible factors. Such factors might include repeated painful dialysis needle insertions, intradialytic muscle cramps, or other physical and psychological symptoms of advanced illness. Inadequate social support or concerns about being a burden to loved ones may also prompt patients to request withdrawal from dialysis. Through shared decision-making, the multidisciplinary team should systematically address and modify any potentially reversible factors.

Determine if depression is playing a role — There is a high prevalence of depression in the dialysis population [36]. Depressive symptoms are associated with higher rates of dialysis withdrawal [24]. However, a diagnosis of depression does not preclude a patient's capacity to withdraw from dialysis unless it directly affects their decision-making capacity.

In some cases, collaboration with other teams including psychiatry, palliative care, or ethics may be helpful [25,37]. Psychiatric consultation may be sought if there is concern that the patient's competency is affected by underlying depression. (See "Suicidal ideation and behavior in adults".)

Patients without decision-making capacity — Among patients with uncertain or absent decision-making capacity, we first determine whether decision-making capacity can be restored. Remediable factors, such as uremic or metabolic encephalopathy, should be resolved in an effort to restore decision-making capacity. Additional measures that might be necessary include temporary or permanent discontinuation of medications that alter mental status, or treatment of medical conditions that may impair mental status, such as infection, depression, and delirium.

If decision-making capacity cannot be restored, then we look for a previously completed advanced directive. Advance directives are documents in which the patient has either: detailed his or her desires concerning future care in the event of becoming incompetent; or has identified a surrogate agent (health care proxy) who knows the patient's desires and can direct the patient's medical care [38]. (See "Advance care planning and advance directives".)

It is usually appropriate to withdraw dialysis in patients without capacity who have previously given a written or documented and explicit oral advance directive indicating that they would not want life-sustaining measures in certain medical situations. It is also appropriate to withdraw dialysis in patients who lack capacity and do not have an advance directive but who do have well-known, strongly held beliefs or values that would be inconsistent with dialysis, as may be verified by the health care surrogate or proxy. (See "Kidney palliative care: Ethics", section on 'Advance care planning and advance directives'.)

Patients without decision-making capacity may also be engaged in multidisciplinary discussions and undergo an evaluation for underlying depression with the support of their health care proxy. (See 'Multidisciplinary discussion to verify intent' above and 'Determine if depression is playing a role' above.)

INVOLVEMENT OF THE FAMILY — The nephrologist should encourage the patient to fully inform their significant others, family, or caregivers of the decision to withdraw from dialysis and the consequences that accompany such a decision. However, this is not an ethical or legal requirement, and some patients will prefer to maintain their privacy for various reasons.

Ideally, supportive family members or caregivers should be allowed to fully comprehend the decision. Similarly, when a surrogate has been appointed, this individual should be fully involved in the decision-making process. Many patients prefer to initially discuss dialysis withdrawal with family and caregivers rather than with clinicians, and continue such discussions through family members and caregivers [39].

ONGOING CARE AFTER WITHDRAWAL OF DIALYSIS — We agree with the Kidney Disease: Improving Global Outcomes (KDIGO) and Renal Physicians Association/American Society of Nephrology (RPA/ASN) recommendations, which state that a systematic approach to communicate about prognosis, treatment options, and goals of care should be implemented and that palliative care should be offered to all patients who are withdrawn from dialysis [27-29].

We educate all patients about the course of events after stopping dialysis that is specific to their overall condition. The mean survival following dialysis withdrawal is 7 to 10 days, although rarely can be many weeks. We counsel the patient and family or caregivers about symptoms, such as progressive encephalopathy, and discuss medical care that will be continued (ie, palliative care). It is important to reassure patients and their families or caregivers that anticipated symptoms can be treated adequately and that drugs with sedating side effects may be necessary to ensure optimal comfort. We discuss potential care sites (eg, in-home or in-center hospice) for the final days of life. (See "Kidney palliative care: Principles, benefits, and core components".)

After dialysis is withdrawn, attention should be directed toward the comfort of the patient. This may include liberalizing the diet, with continuation of fluid restriction (<1 L/day) to minimize edema, if tolerated. Other medical treatments that do not improve the patient's quality of life should be stopped. (See "Kidney palliative care: Conservative kidney management", section on 'End-of-life care'.)

Emotional, spiritual, social work, and bereavement support services should be provided and access to palliative or hospice care made available as appropriate. Specific issues related to palliative care of such patients are discussed separately. (See "Kidney palliative care: Principles, benefits, and core components".)

The nephrology or palliative care staff can optimize the care of the dying patient by facilitating the patient's priorities for their remaining time. Collaboration with hospice services can also be of benefit. With such collaboration, the team should ensure that patients have addressed major financial and personal affairs, such as wills. It should be emphasized that this is the time for patients to communicate with loved ones and to come to terms with their life. Withdrawal of dialysis, performed in this deliberate manner can contribute to a "high quality of death" and a "reconciled death" [21,40-42].

PROGNOSIS — Patients generally survive an average of 7 to 10 days after stopping dialysis [42-44]. Patients who have a residual urine output tend to survive longer. The median time to death after withdrawal of hemodialysis is seven days, with 70 percent of patients dying within 10 days, 28 percent between 10 to 30 days, 2 percent between 30 and 100 days, and 1 percent after 100 days. Patients who withdraw from dialysis are less likely to die in the hospital or intensive care unit and more likely to utilize hospice as compared with patients who continue dialysis [45].

In one study, independent predictors of earlier mortality included male sex, being White Canadian, having a referral from a hospital to a nursing home/hospice residence, being of lower functional status, having peripheral edema, and requiring supplemental oxygen [46]. Another study of patients who withdrew from dialysis identified the lack of oral nutrition and the lack of ventilator use as factors associated with earlier mortality [47].

BARRIERS TO WITHDRAWAL OF DIALYSIS — Given the aging dialysis population, the increase in burden of comorbidity, and the expected doubling of the ESKD population, medical and socioeconomic forces are likely to make withdrawal of dialysis an increasingly common scenario for the nephrologist [13]. However, certain barriers impede the optimal delivery of care required for withdrawal of dialysis. These include [26,48-50]:

Unfavorable national and institutional policies.

Culture of medicine that values extension of life over quality of life.

Lack of training in end-of-life care and effective communication strategies.

Societal pressures for aggressive care.

Lack of adequate resources to provide supportive and end-of-life care.

Discord among nephrologists about the continuation or withdrawal of dialysis in certain clinical settings.

Some strategies that have been attempted and that should be expanded to overcome the above barriers are:

Providing education and enhancing communication skills using tools such as the NephroTalk curriculum, and providing timely feedback during clinical encounters led by experienced mentors [51,52].

Raising interest in withdrawal from dialysis at the national and international conventions attended by clinicians and multidisciplinary team members [53,54].

Promoting establishment of advanced directives in every patient initiated on dialysis with systematic support from the large dialysis organizations [55,56].

SUMMARY AND RECOMMENDATIONS

Epidemiology – Withdrawal of dialysis, which means discontinuation of maintenance dialysis, is becoming more common. Withdrawal is more prevalent among patients who are older, White American, of female sex, with multiple comorbidities, and a poor quality of life. (See 'Epidemiology' above.)

Indications for withdrawal – Withdrawal from dialysis is appropriate in the following patient groups (see 'Indications for withdrawal of dialysis' above):

Patients in any state of health who have decision-making capacity and who choose to withdraw from dialysis.

Patients who have severe, continued, and irremediable pain or another source of physical or psychosocial suffering, in whom dialysis may prolong life for a short period of time but will also prolong suffering.

Hospitalized patients (especially older adults) with multiple organ system failure that persists despite intensive therapy.

Patients with irreversible mental incapacitation that interferes with their ability to understand the process, implications, risks, and benefits of dialysis in such a way that dialysis cannot be safely administered.

Patients who have a limited life expectancy (expected death within 60 days) due to cancer, end-stage lung, liver, or heart disease, or other illnesses, which dialysis will not change.

Ethical and legal issues – The principles of autonomy and of self-determination support the right of individuals with capacity to decline medical care and, therefore, withdraw from dialysis. This is consistent with the law that universally upholds a competent adult patient's right to decline medical care. (See 'Ethical and legal issues' above.)

Approach to withdrawing dialysis – Our approach to withdrawing dialysis depends upon whether or not the patient has decision-making capacity (see 'Clinical approach to withdrawing dialysis' above):

Among patients with intact decision-making capacity, the reasons behind the patient's decision to withdraw from dialysis should be explored in a multidisciplinary discussion. This should be followed by an assessment of whether they understand the outcome of their decision. The clinician should also ensure that an underlying mental health condition, such as depression, is not contributing to their decision. (See 'Patients with decision-making capacity' above.)

Among patients with uncertain or absent decision-making capacity, we first determine whether decision-making capacity can be restored by reversing certain causes (eg, medications). If decision-making capacity cannot be restored, then we look for a previously completed advanced directive or description of well-known, strongly held beliefs or values that would be inconsistent with dialysis, as verified by the health care surrogate or proxy. (See 'Patients without decision-making capacity' above.)

Caregiver involvement – The nephrologist should encourage the patient to fully inform their family, caregivers, or significant others of the decision to withdraw from dialysis, although some may choose to maintain their privacy. (See 'Involvement of the family' above.)

Palliative care – A systematic approach to communicate about prognosis, treatment options, and goals of care should be implemented, and palliative care should be offered to all patients who are withdrawn from dialysis. (See 'Ongoing care after withdrawal of dialysis' above and "Kidney palliative care: Principles, benefits, and core components" and "Kidney palliative care: Conservative kidney management", section on 'Crisis planning' and "Kidney palliative care: Conservative kidney management", section on 'Symptom management focused on optimizing quality of life'.)

Prognosis after withdrawal – Patients generally survive an average of 7 to 10 days after stopping dialysis. Patients who have a residual urine output tend to survive longer. (See 'Prognosis' 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.

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