Palliative Dialysis

Dialysis is typically thought of as a life-saving treatment for patients with end-stage kidney disease (ESKD), but for a subset of older patients with dementia or ischemic heart disease or other advanced comorbidities it may not confer a survival benefit, stop the ESKD trajectory, and be life-extending despite achieving standard quality metrics. Providers should consider palliative dialysis for patients with ESKD who have a life expectancy of less than one 1 year, symptoms that might be ameliorated by dialysis, and values such that they would consider a trial of dialysis. Offering palliative dialysis should be considered part of a patient-centered approach for some patients with ESKD with a poor prognosis even with dialysis. In this broadened view of choices for patients with ESKD, decision-making need not only include forgoing or withdrawing dialysis as options. Dialysis is a care plan that strives to achieve hopes while minimizing fears. This balance of the positives and negatives of dialysis can be thought of as palliative dialysis.

Coordination of Care and Care Transitions With Primary Care Clinicians, Specialty Palliative Care, and Hospice

Patients with chronic kidney disease typically have needs that cut across a range of services, including nephrology, other specialties, primary care, and palliative care. This chapter proposes a model of integrated supportive care from diagnosis to end of life that coordinates the efforts and maximizes the benefits of different healthcare teams. Supportive care teams can learn primary kidney supportive care skills to manage symptoms, provide emotional support, and facilitate conversations that focus on what matters most to patients and families. Applying best practices of care coordination, they can facilitate seamless transitions as the patient’s condition evolves.

Systematic Pain Assessment and Management

Patients with chronic kidney disease suffer from high rates of pain. Pain is a highly complex, multidimensional, and personal phenomenon with far reaching physical and psychosocial consequences if the pain progresses to become a chronic disorder. Systematic integration of global symptom screening needs to be incorporated into routine kidney care, followed by a comprehensive pain assessment for those with clinically significant pain, keeping in mind the overall goal is to promote functionality and quality of life and not to necessarily completely resolve the pain. There is tremendous variability within and between countries in the management of pain, including the prescribing patterns of analgesics. This chapter outlines a systematic approach to the assessment and management of acute and chronic pain with both nonpharmacologic and pharmacologic interventions.

Active Medical Management Without Dialysis for Patients With Advanced Chronic Kidney Disease

This chapter outlines the management of patients with advanced chronic kidney disease for whom dialysis may not be beneficial or desired. Active medical management without dialysis should be offered to patients through a shared-decision making process as a viable alternative to dialysis. This is important as patients and families wish to consider not only survival, but also symptom control and QoL in their decision to pursue a dialysis or nondialysis pathway. A multidisciplinary team delivering good quality, active, and patient-centered care that combines chronic kidney disease management with the principles of palliative care can help patients achieve good symptom management and quality of life. Active and early planning for the end-of-life phase facilitates appropriate care for patients in acute and/or unexpected deterioration and helps achieve patient and family goals.

Transforming Practice to Support Person-Centered Care for Patients With Advanced Kidney Disease

Contemporary patterns of care for patients with advanced kidney disease are far from person-centered. Large changes to health systems, payment structures, quality measurement, patient and provider education, and the culture in which care is delivered will be needed to support a more person-centered approach to care for members of this population. To uphold the essence of who our patients are, efforts are needed throughout the illness trajectory to foster the development of strong patient–provider relationships and extend the reach of these relationships across settings, to educate our patients about their treatment options and what to expect in the future, to offer opportunities for patients to involve their family members and close friends in their care, and ultimately to promote a culture in which providers are flexible, creative, and tireless in working with their colleagues and with their patients and their families to fulfill the mission of person-centered care of finding the “right treatment for the right person at the right time.”

Ethical Issues in the Supportive Care of Patients With Advanced Kidney Disease

Although the benefits of standard dialysis therapy for many older adults with complex comorbid conditions is equivocal, there continues to be substantial moral uncertainty in the practice of withholding and withdrawing dialysis treatment. This chapter reviews several ethical conundrums in palliative care of patients with advanced kidney disease, including uncertainty about the moral status of withholding dialysis and pursuing medical management without dialysis, challenges in decision-making when patients lack capacity to participate, and ethically relevant social and cultural factors influencing practice. Better understanding of the underlying causes of these conundrums reveals opportunities to improve quality of patient care at the individual and system levels by incorporating palliative practices. The chapter also suggests strategies for clinicians to identify and facilitate resolution of ethical conflicts around end-of-life care for patients with advanced kidney disease in clinical practice.

Palliative Considerations for the Patient With Acute Kidney Injury in the Intensive Care Unit

Acute kidney injury is a common occurrence in the intensive care unit and one that is associated with a high morbidity and mortality. One role for palliative care is to guide medical decision-making regarding management of patients with acute kidney injury. This role can be fulfilled as part of primary palliative care by the intensive care unit and nephrology teams or by specialist palliative care clinicians if there is a need for assistance with conflict resolution. In such discussions, it is important to understand the patient’s prognosis and values, preferences, and goals to inform the shared decision-making discussion about whether to initiate or continue renal replacement therapy. This chapter reviews the literature and guideline recommendations on a palliative care approach to managing critically ill patients with acute kidney injury.

The System to Implement Advance Care Planning and Make Proxies, Advance Directives, and Portable Medical Orders Available and Actionable Across Care Settings

Few would debate that thoughtful advance care planning conversations between providers, patients, and patients’ loved ones reflect a respect for the right to direct one’s end-of-life care based upon personal values, preferences, and goals. Previous research suggests that advance directives and medical orders are the vehicles to enable patient wishes to be known. However, without ensuring clinician access to those documents, the chances that a patient will receive the desired level of treatment at the end of life diminish significantly. This chapter explores the impediments to accessing and acting upon advance directives and medical orders and suggests a comprehensive system that improves access to completed advance care planning documents for providers and patients. It reviews the successes with such a system in a state—West Virginia—and the positive outcomes with employing components of the proposed system with chronic kidney disease and dialysis patients.

Involving Family and Friends in Palliative Care for Persons With Kidney Disease

Family-centered palliative care for patients with kidney disease shows great promise in alleviating the suffering of patients with collateral benefits to family members. Engaging family caregivers is particularly valuable for those with kidney disease, given often multiple comorbidities, impact of dialysis on quality of life, and often conflicting end-of-life decisions. Family caregivers are at high risk for burnout, increasing the likelihood that patients themselves will not receive end-of-life care or support. Important components of family-centered palliative care include assessment, emotional support, education, assertive communication skills, referrals, and grief and bereavement support. It is crucial that the care team recognize the role of cultural norms, family beliefs, and communication patterns, tailoring family-centered care to meet the needs of each individual patient.

Establishing Relationships With Specialty Palliative Care for More Complex Patient Needs

Interdisciplinary palliative care teams can improve quality of life by addressing the needs and experience of the whole person with chronic kidney disease, including physical, psychological, social, spiritual, cultural, end-of-life, ethical, and practical concerns. Nephrology teams can develop the essential skills to provide primary palliative care for uncomplicated problems, but consultation with a specialty palliative care team is warranted for more severe, complex, or refractory problems. Although specialty palliative care can be delivered in any care setting, it may be a scarce resource outside of a hospital or hospice. Nephrology teams should identify all the specialty palliative care resources available in their community and consider engaging palliative care experts not only in patient care but also in advisory, educational, and quality improvement activities.