How should I present a goal‑of‑care discussion for a patient with stage 3–5 chronic kidney disease and comorbid hypertension, diabetes, cardiovascular disease, anemia, and mineral‑bone disorder, incorporating disease trajectory, treatment options, and the patient’s values and preferences?

Goal-of-Care Discussion Framework for Advanced CKD with Multiple Comorbidities

Begin goal-of-care discussions early in the disease trajectory—ideally at stage 3 CKD—using a structured shared decision-making process that prioritizes the patient's values, preferences, and quality of life over disease-specific metrics, and revisit these discussions regularly as the patient's health status evolves. 1

Timing and Initiation of Discussions

• Start advance care planning conversations when patients reach stage 3 CKD, not waiting until dialysis is imminent, as this allows adequate time for patients to process information and make informed decisions aligned with their values 1
• Revisit goals of care at each clinical transition: when eGFR declines by >5 mL/min/1.73 m² per year, with new hospitalizations, when complications emerge (anemia, mineral-bone disorder), and at least annually for stable patients 1
• Recognize that patients focus on living well in the present while clinicians tend to focus on future dialysis preparation—explicitly acknowledge this tension and validate both perspectives 2

Structured Communication Framework

Use the "Ask-Tell-Ask" method to structure conversations: first elicit what the patient already knows and wants to know, then share medical information in plain language, then check understanding and invite questions 1

Step 1: Assess Patient's Current Understanding and Priorities

• Ask: "What do you understand about your kidney disease and where it's heading?" 1
• Explore: "What matters most to you in your daily life right now?" and "What are you hoping treatment can help you achieve?" 1
• Identify competing priorities: patients with multiple comorbidities (hypertension, diabetes, cardiovascular disease) may not prioritize CKD management above other concerns—acknowledge this explicitly 2
• Consider cultural context: in many cultures, family and community have central roles in decision-making, so identify who should be included in discussions 1

Step 2: Present Disease Trajectory in Plain Language

• Explain that CKD stages 3-5 represent progressive kidney damage that cannot be reversed, but progression can be slowed with treatment 1
• Provide realistic prognosis using validated prediction tools: calculate 2-year kidney failure risk and present this numerically (e.g., "Based on your current kidney function, you have a X% chance of needing dialysis within 2 years") 1
• Describe the trajectory of complications: anemia causing fatigue, mineral-bone disorder causing bone pain and fractures, cardiovascular disease progression, and eventual need for kidney replacement therapy if disease progresses 1, 3
• Avoid medical jargon—use terms like "kidney function" rather than "eGFR," and "protein in urine" rather than "albuminuria" 1

Step 3: Present Treatment Options with Benefits and Burdens

Frame treatment options around what matters to the patient, not just clinical outcomes:

Disease-Modifying Therapies

• ACE inhibitors/ARBs and SGLT2 inhibitors slow kidney function decline and reduce cardiovascular events, but require monitoring for hyperkalemia and may cause initial eGFR dip 1
• Present absolute risk reductions, not just relative risks: "This medication reduces your risk of kidney failure by X% over Y years" 1

Management of Complications

• Anemia treatment with ESAs or iron improves energy and quality of life but requires regular monitoring 1, 3
• Phosphate binders and vitamin D analogs for mineral-bone disorder prevent fractures but involve taking multiple pills with meals 3
• Blood pressure and glucose control reduce cardiovascular events but may increase medication burden 1

Kidney Replacement Therapy Options

• Hemodialysis: 3 times weekly, 3-4 hours per session, requires vascular access, provides social interaction at dialysis center but limits flexibility 1
• Peritoneal dialysis: Daily at home, more flexibility and independence, but requires manual dexterity and dedicated space at home 1
• Kidney transplantation: Best long-term outcomes and quality of life, but requires surgery, lifelong immunosuppression, and suitable donor 1
• Comprehensive conservative care (non-dialysis pathway): Focus on symptom management and quality of life without dialysis, appropriate for patients prioritizing comfort over life prolongation 1

Step 4: Explicitly Address the Conservative Care Option

• Present comprehensive conservative care as a legitimate treatment option, not a "giving up" approach—it focuses on maximizing quality of life through symptom management, supportive care, and avoiding burdensome interventions 1
• Appropriate for patients with: limited life expectancy from comorbidities, poor functional status, strong preference to avoid dialysis, or those for whom dialysis would provide minimal survival benefit 1
• Clarify that choosing conservative care does not mean abandoning the patient—it involves active symptom management, psychosocial support, and hospice services when appropriate 1

Addressing Power Dynamics and Ensuring True Shared Decision-Making

Recognize that patients perceive significant power imbalances in the clinician-patient relationship and may hesitate to express preferences that differ from perceived medical recommendations. 2

• Explicitly state: "There is no single 'right' answer here—the best choice depends on what matters most to you" 1, 2
• Avoid presenting dialysis as the default or inevitable option; frame all options as equally valid choices based on patient values 2
• Ask: "What concerns do you have about any of these options?" and "What would make you choose one option over another?" 1
• Validate patient concerns even when they conflict with clinical guidelines: "I hear that you're more concerned about [patient priority] than [clinical metric]—let's talk about how we can address that" 2

Documenting Goals and Preferences

• Document specific patient-stated goals (e.g., "wants to maintain independence," "prioritizes time with grandchildren," "wants to avoid hospitalizations") not just treatment choices 1
• Complete formal advance directives including: preferences for dialysis initiation/withdrawal, preferences for hospitalization and intensive care, and identification of healthcare proxy 1
• Use tools like the "Five Wishes" document or "Prepare for Your Care" website to facilitate structured advance care planning 1
• Document health states in which patient would want to withdraw dialysis (e.g., severe dementia, persistent vegetative state, intractable pain) 1

Multidisciplinary Team Involvement

• Involve nephrology, primary care, cardiology (for cardiovascular disease), endocrinology (for diabetes), pharmacy (for medication management), nutrition, and social work in coordinated care planning 1
• Assign a care coordinator to help patients navigate appointments, medication changes, and transitions between care settings 1
• Consider palliative care consultation early (not just at end-of-life) for complex symptom management and additional support with goals-of-care discussions 1

Common Pitfalls to Avoid

• Delaying discussions until dialysis is imminent: This leaves inadequate time for informed decision-making and often results in emergency dialysis starts that don't align with patient preferences 1, 2
• Presenting dialysis as the only option: Many patients are unaware that conservative care is a legitimate alternative, leading to unwanted dialysis initiation 1
• Focusing solely on clinical guidelines rather than patient values: Patients perceive this as a "one-size-fits-all" approach that ignores their individual circumstances 2
• Assuming family members know patient preferences: Surrogates are often inaccurate in predicting patient wishes without explicit prior discussions 1
• Failing to address depression and cognitive dysfunction: These barriers significantly impair decision-making capacity and must be identified and treated 1

Ongoing Reassessment

• Reassess goals of care at every significant clinical change: hospitalization, functional decline, new diagnosis, or change in prognosis 1
• Recognize that patient preferences may change over time as they experience disease progression and treatment burdens—maintain flexibility to revise plans 1
• Use validated symptom assessment tools (e.g., Edmonton Symptom Assessment Scale-Renal, Dialysis Symptom Index) to objectively track symptom burden and quality of life 1