Table 1 Shared decision making for the initiation and continuation of dialysis: A Proposal from the Japanese Society for Dialysis Therapy [4]

Proposal 1. Respect for patients’ decision making by healthcare teams

 1. Respect patients’ decisions about healthcare management and care strategies

 2. Obtain a consent form for the initiation of dialysis from patients before initiating dialysis

 3. Provide information to patients about their right to prepare advance directives

Proposal 2. Shared decision making with patients

 1. Provide patients with adequate information

 2. Collect adequate information from patients

 3. Have thorough discussions to support patients in making the best possible choices

 4. Provide patients with adequate information about renal replacement therapy (RRT)

  (1) At the appropriate time, provide information about RRT becoming necessary when kidney function deteriorates in the future

  (2) For patients for whom dialysis will become necessary in the near future, provide information about RRT and the natural course of end-stage kidney disease (ESKD)

 5. If patients do not opt for RRT when dialysis needs to be initiated, have repeated discussions with patients and their family members (including heirs) for consensus building

  (1) Continue discussions until the advantages and disadvantages of conservative kidney management (CKM) and the initiation of dialysis are understood

  (2) Have discussions in accordance with the decision-making process (Fig. 1)

  (3) When patients make a final decision to opt for CKM, obtain a confirmation form for the “Miawase” approach to dialysis if necessary

  (4) Reassess patients for their changes in decisions when they visit healthcare facilities

 6. Assess whether patients are receiving healthcare management and care in compliance with the decisions they have made

Proposal 3. Advance care planning with patients

 1. Have thorough discussions on various occasions about future healthcare management and care

 2. Have thorough discussions on patients’ preferred healthcare management and care in accordance with the decision-making process (Fig. 1)

  (1) Provide patients with information about the expected symptoms and prognosis after implementing the temporary decision to forgo dialysis

  (2) When patients choose to have their final moments at home, cooperate with the doctors responsible for home-based healthcare

  (3) Assess patients’ changes in their decisions in response to changes in disease status

Proposal 4. Proposal of the temporary decision to forgo dialysis at the EOL stage by healthcare teams

 1. Judge the patient’s condition regarding whether the temporary decision to forgo dialysis should be considered by referring to Table 2

 2. Engage in the decision-making process (Fig. 1)

 3. Provide adequate palliative care after CKM is chosen and the temporary decision to forgo dialysis is implemented

Proposal 5. Request for the temporary decision to forgo dialysis by patients with decision-making capacity or by the families of patients without decision-making capacity to healthcare teams

 1. Confirm the decision through discussion with patients with decision-making capacity or through the examination of any prior instruction (written or oral) made by patients without decision-making capacity

 2. When healthcare teams judge that patients are not at the EOL stage, ESKD that requires maintenance dialysis for survival should be diagnosed

  (1) When CKM is chosen through the decision-making process (Figure) and when consensus is reached among the relevant parties, obtain a confirmation form for the temporary decision to forgo dialysis if necessary and continuously provide adequate palliative care

  (2) When patients’ decisions cannot be inferred or when consensus is not reached among the relevant parties, continue discussions to build consensus

  (3) Reassess patients for changes in their decisions when they visit healthcare facilities

Proposal 6. Requests from patients that their family, etc., not be notified about their disease status

 1. Determine the reasons why patients do not want their families to be notified and evaluate patients’ decision-making capacity

 2. Refrain from contacting families if patients have decision-making capacity, but contact them if they do not have decision-making capacity

 3. When uremic symptoms are confirmed or when CKM is chosen and the temporary decision to forgo dialysis is to be implemented, inform patients that their family members will be contacted and then provide them the information about the disease status

Proposal 7. Support for decision making by patients with impaired comprehension and cognition by healthcare teams and patients’ families

 1. Respect and support patients’ decision making and provide them with the best possible healthcare management and care that are consistent with their wishes

 2. Encourage patients’ families to engage in advance care planning with patients while they still have decision-making capacity