Decision-making around Commencing Dialysis

Supporting informed autonomy

Consent requires that patient be fully informed about all options for treatment and conservative care, and given opportunity to discuss and weigh the consequences of each. The team must ensure full understanding, respect the patient's decision to choose or refuse dialysis and support what's in their best interest. If the patient is incapable of taking a decision, the surrogate/legal agent of the patient, can be empowered to make the decision for him/her.

In India, collective autonomy including the extended family, rather than individual autonomy, prevails. Hence, dialysis-related decisions may involve consultation with the patient's family, if the patient so wishes.

Nonmaleficence

The nephrology team has an obligation to ensure that no harm that is foreseeable is done, by weighing the balance between beneficence from regular dialysis and the burden of therapy, especially from patient's perspective. There is a subset of patients where dialysis cannot be safely carried out, for example, those with multi-organ failure and hemodynamic instability.

Beneficence

Recommending dialysis for any individual patient would be ethical, when reasonable improvement is expected in terms of survival, and quality of life.

Justice

This ethical principle of distributive justice suggests fair allocation of available resources. It guides channelization of limited resources to those with maximum productive years of life. Resources include: (i) the resources of dialysis facility as well as (ii) resources of the family/community. Some patients with ESKD may not receive dialysis for financial reasons. This cohort is choice restricted. This is a significant issue in India.

Real-life clinical situations are complex and often ethical principles may counter each other. In these situations, the treating team would need to engage deeper with the patient and his/her family through the process of “shared decision-making.”

2. All CKD-stage 4–5 patients should be empowered to engage fully in decision-making

CKD patients are inadequately prepared for either living with CKD, dialysis or dealing with end-of-life issues.[1112] It is imperative that patients with CKD/ESRD with its complex disease trajectories, high morbidity, and immense socioeconomic implications, are empowered with information to make empowered decisions on care plans.

The importance of timely and appropriate predialysis education cannot be overstated. It improves patient understanding of the process and directly reduces incidence of unplanned emergency dialysis.[13] Additional benefits of predialysis education include (i) it improves survival, in comparison to those who do not receive it, (ii) gives a better sense of well-being, reduces anxiety and ensures better physical functioning, and (iii) is associated with a higher likelihood of staying employed.[1415161718]

It is recommended that dialysis units have educational programs on RRT, trained counselors and supportive care.

The decision to undergo long-term dialysis must be an “informed” one. All patients with estimated glomerular filtration rate <30 ml/min (CKD stage 4 and above) should receive timely and personalized information about.

1. Their disease-the extent, progress, and their position on the CKD trajectory

2. Treatment options-pros and cons of RRT (hemodialysis, peritoneal dialysis or kidney transplantation) and where appropriate, of a conservative pathway. The nephrology team must ensure that the patients have realistic understanding about the commitments, morbidities, survival, and quality of life on dialysis

3. Prognosis-what may be expected with or without the RRT intervention

4. Supportive care-this must be integral to all forms of ESRD care-plan including dialysis, posttransplant, or comprehensive conservative care (CCC).

Communication skills are crucial in facilitating shared decision-making conversations. Open questions, active listening, expressing empathy, exploring thoughts behind verbal or nonverbal expressions, verifying comprehension, summarizing and documenting main points, for patient to review and revert, are all trainable essentials skills to be internalized by RSC team personnel.

3. The approach to dialysis decision-making SHOULD be patient-centered

This recommendation highlights the importance of professionals and patient/family working together to ensure best possible care outcomes. It endorses patient-centered care for refining healthcare outcomes and greater patient satisfaction. Although the treating nephrologist would lead the discussion and empathetically guide decision making, every attempt is to be made to align the treatment plan with patient's preferences and expectations.

4. Consider individual circumstances to initiate or forego dialysis.

Based on biological prospects

In clinical situations where patients may benefit very little or not at all with dialysis, compared to conservative care alone, the treating physician, in consultation with the patient and his/her family, may consider foregoing dialysis.

1. When clinical condition precludes the technical process of dialysis because the patient:

   1. Is unable to cooperate (e.g., advanced dementia)

   2. Unstable medically (e.g., hypotension).

2. Prognostication suggests life-expectancy <6 months, due to life-threatening comorbidities with severe physical, cognitive or functional decline, for example, malignancy, end-stage cardiac/liver/respiratory failure

3. Age >75 years with 2 or more of the following:

   1. When the nephrologists caring for the patient responds with “No&” to the question-Would I be surprised if this patient died in the next year?'[19] This is an easy-to-apply prognostic tool validated in ESRD patients and helps identifying patients in whom nondialysis conservative pathway is advisable

   2. High comorbidity score-Modified Charlson's score (MCS) >8[20]

   3. Significantly impaired functional status with Karnofsky Performance scale of <40[21]

   4. Severe chronic malnutrition (S. albumin <2.5 g/dL).

These suggestions are based on studies discussed earlier and the latest clinical guidelines.[12822232425] The ANZSN RSC Guidelines use Couchoud model and surprise question to guide decisions for nondialysis pathway, especially for the elderly population.[2526] Use of surprise question, MCS and Cohen score is suggested for dialysis patients with comorbidities, being considered for transition to a nondialysis pathway.[2527] However, these risk scores have not yet been validated in the Indian CKD population and therefore, their clinical utility in our population needs to be explored.

Based on patient autonomy or advance care directives

Aside from the situations listed above, a “nondialysis” conservative pathway may be adopted when

1. It is a voluntary choice on the part of a fully empowered patient/patient's legal agent to forego dialysis

2. There is an official advance directive in which the patient has explicitly recorded refusal of dialysis, although the decision-making capacity of the patient may be currently compromised.

The choice-restricted group

The Kidney Disease: Improving Global Outcomes Controversies Conference report on Supportive Care in CKD defines “choice-restricted” group as patients in whom resource constraints prevent or limit access to RRT.[22] In this group of patients, CCC would be preferable to unsafe precipitous care or no care at all.

5. When decision to forego dialysis has been made, the patient should receive CCC

Patients who are advised, or opt to forego dialysis, along with those from “choice restricted” group should receive CCC. It includes two simultaneous inputs; the competencies of renal medicine aimed to preserve renal function and prevent complications, along with competencies of palliative medicine, to maximize function, minimize symptoms, and maintain quality of life as prioritized by the patient.

Abandonment, quick referral, or a noncommunicative transfer to palliative care is inappropriate.

The patient who made a purely autonomous decision to forego dialysis, must be made aware that the decision to forego dialysis may be re-considered later. The nephrologist may review the patient's decision and support decisions on the course of management at follow-up visits.

6. Time-limited trial (TLT) of dialysis may be offered when benefits of dialysis is uncertain

In situations where the patient/family are unable to make a clear decision, it is reasonable to offer a TLT of dialysis. Length of the trial and parameters for review should be individualized and predetermined to avoid future ambiguity.[24] The decision to forego dialysis may be made at the end of that period, if the patient is responding poorly, has complications, or requests for withdrawal of dialysis.

7. Establish RSC facility to support conservative care needs of CKD/ESRD patients.

All patients are ideally managed by multi-disciplinary team consisting of renal nurse, dietician, palliative care specialist, social worker, and led by the nephrologist. The team provides RSC with trained competencies in communications to identify expectations, goals of care, engage with all stakeholders, and facilitate shared decision-making. Important objective of RSC team would be to develop systems in place; to elicit patient preferences, attend to symptoms and be sensitive to quality of life, within the scope of ongoing disease-modifying interventions and beyond. Guidelines and resources are freely available online.[28] The renal version of the Integrated Patient Outcome Scale (IPOSRenal) and EuroQoL-5D (EQ-5D) are free validated tools to record and prioritize patient concerns.[2930]