Skip to content

Draft: not yet reviewed by a clinician

Use this page to prepare questions for your care team. It does not replace their advice. Your own targets and doses come from your nephrologist, diabetes team and renal dietitian.

Advance care planning

In short

Advance care planning means thinking about, talking about and writing down the care you would want if you became very ill and could not speak for yourself. It has two main parts: naming a health care proxy (someone you trust to decide for you) and writing a living will (which treatments you would or would not want) (Medicare). It is not only for the end of life. Your wishes about dialysis, transplant and hospital care can change as your kidneys change, so revisit the plan at each stage. KDIGO asks kidney teams to make advance care planning available, especially to people nearing the end of life or choosing conservative care, and describes supportive care, which eases symptoms, as something you can have at any stage alongside any treatment, including dialysis (KDIGO 2024, practice point 5.5.3 and section 5.5).

Your key documents

Document What it does Who signs it
Health care proxy (also called a durable power of attorney for health care) Names the person who makes health decisions for you if you cannot You, following your state's form
Living will Says which treatments you want or do not want if your life is threatened You
Portable medical order (POLST; some states say MOLST, POST or MOST) Turns your wishes into medical orders that travel with you; for people who are seriously ill or frail A health care professional, after talking with you
Your diabetes and kidney summary Your insulin plan, how to treat a low, your dialysis or transplant details You and your team

Sources: Medicare: advance care planning; National POLST.

Cost (US): Medicare Part B covers advance care planning. You pay nothing when it is part of your "Welcome to Medicare" or yearly Wellness visit and the provider accepts assignment; otherwise the Part B deductible and coinsurance apply (Medicare).

Supportive care and conservative care

  • Supportive care focuses on how you feel: pain, itch, tiredness, poor appetite, low mood and sleep. It can be given at any stage and alongside dialysis or a transplant (KDIGO 2024, section 5.5).
  • Comprehensive conservative care is a planned choice not to have dialysis or a transplant. It is not "giving up" and not "no treatment". Your team keeps protecting your kidneys, treats anemia and other problems, manages symptoms and supports your feelings and your family (NIDDK; KDIGO 2024, practice point 5.5.2).
  • It may suit people for whom dialysis may not lengthen life or make it better, such as some older people with other serious illnesses (NIDDK). A KDIGO conference found that people with advanced kidney disease, including those on dialysis, carry a heavy burden of symptoms and that conservative and palliative care often fall short, and set out a plan to improve them (KDIGO 2015 supportive care).
  • With type 1 diabetes, insulin is always needed, because the body makes little or none of its own (ADA 2026 §9). A comfort-focused plan changes the glucose goals, not the need for insulin. Ask your team to write that plan down.

What to do

  • Choose a health care proxy: someone who knows you, will speak up for your wishes, and can be reached quickly. Ask them first.
  • Talk with your proxy and family about what matters most to you: time at home, independence, avoiding certain treatments, or trying everything.
  • Fill in your state's forms. Your doctor, dialysis social worker or an attorney can help (Medicare).
  • Give copies to your proxy, your kidney team, your diabetes team and your hospital. Keep one with your medicine list.
  • Add your diabetes facts: "I have type 1 diabetes and always need insulin. Treat a low straight away." Include where your glucagon is.
  • Revisit your plan each time your stage or treatment changes, after a hospital stay, and at least once a year. KDOQI suggests reviewing your kidney "life plan" yearly (KDOQI, statement 1.2).
  • If you are seriously ill or frail, ask whether a POLST-type form is right for you (POLST).

Examples

A plan made early. At stage G3b, a 45-year-old man names his wife as his proxy. He writes that he would want dialysis and a transplant, and that he does not want to be kept on machines if there is no hope of recovery. He reviews it when he starts dialysis 6 years later, and nothing changes.

A plan that changes. A 79-year-old woman on hemodialysis has a stroke and finds sessions more and more tiring. With her daughter and her team she talks about how she wants to spend her time. She updates her living will and her proxy knows her wishes.

Your rights at a US dialysis unit. The unit must tell you about your right to make advance directives and about its own policy on them. You also have the right to refuse or stop treatment (42 CFR 494.70).

Ask your care team

  1. What is likely to happen to my kidneys over the next few years, and what are my choices?
  2. What would conservative care look like for me? Who would be on my team?
  3. If I start dialysis and it does not suit me, what can I do?
  4. How would my diabetes care change if my goal became comfort?
  5. Can you or a social worker help me fill in an advance directive?
  6. Can we put my wishes in my medical record so every team can see them?

Get help now if…

Call 911 (or your local emergency number)

Chest pain, severe breathlessness, new confusion or a seizure, or a low blood glucose the person cannot treat themselves (give glucagon, then call). If the person has a portable medical order (POLST), show it to the paramedics. Full list: Get help now.

Call your kidney team today

Symptoms that are getting worse, such as itch, sickness, poor appetite or breathlessness, or if you are thinking about stopping dialysis. Your team can help with symptoms and talk through your choices.

Sources

Not yet reviewed by a clinician. Facts and sources last checked 2026-10-06.