While both dialysis and kidney transplantation offer vital treatment options for patients with chronic kidney disease, there are instances where complications arise, leading to the complex consideration of discontinuing dialysis. In the United States, dialysis withdrawal is a significant factor, accounting for 15-25% of deaths among CKD patients. This decision is deeply personal and multifaceted, influenced by various patient factors and often a precipitating cause.

Factors associated with the choice to withdraw include advanced age, severe atherosclerotic disease, and poorly controlled diabetes with advanced complications such as vision loss, severe cardiovascular disease, or limb loss. A higher physical discomfort index also plays a role. Interestingly, a higher educational level, perhaps enabling a more comprehensive weighing of life quality versus prolongation, and gender (with more women opting to discontinue) are also associated with early withdrawal. Often, a specific event triggers the decision, such as failure to thrive, new medical complications, or repeated issues with dialysis access.

Patient Rights and Medical Protocol

Based on ethical principles and the Patient Self-Determination Act of 1990, all competent patients possess the personal and legal right to withdraw from dialysis. If a patient expresses this wish, the medical team must follow a careful protocol. This includes assessing any potentially reversible factors that may have led to the decision and modifying them if possible. Crucially, the team must assess the patient's decision-making capacity, ensuring full comprehension that withdrawing from dialysis typically leads to death within one to two weeks. Informed consent is paramount, and all medical team members should be involved in this assessment and discussion.

The nephrologist must engage in a thorough, often ongoing dialogue with the patient to confirm these are indeed their genuine wishes. If the capacity for informed consent cannot be restored, the team must identify any previously completed advance directives. Family involvement is also vital; the medical team must ensure the patient has informed their family of the decision, and both the patient or medical team must clearly explain the consequences.

Supporting the Decision

If, after repeated discussions, the patient remains steadfast in their desire to withdraw, the medical team should support that decision and encourage the family to do the same. During this time, all efforts should focus on keeping the patient as comfortable as possible. The medical team should explain the options for providing appropriate end-of-life medical care. This might involve referring the loved one to a skilled-care facility with round-the-clock care or contracting with a visiting nurse or hospice agency for home care.

Home care requires ordering necessary medical equipment, such as a hospital bed, bedside commode, and portable oxygen, to maximize patient comfort and ensure safe working conditions for agency staff. The medical team must work with all involved parties to provide care and respect for the patient’s right to dignity and privacy throughout the end-of-life process. Caregivers should keep the family closely informed of their loved one’s condition and provide emotional support as their loved one approaches the end of life's journey.

Exploring Other Options

For those exploring all avenues, the KFCP service area includes over 50 dialysis centers. You can find a dialysis center near you. Additionally, for individuals who may qualify and are considering other paths, you can learn more about kidney transplantation, including how to become a living kidney donor or begin the transplantation process. Information on Pennsylvania Transplantation Centers is also available to help guide your choices.