What to do when you don’t want dialysis: understanding options, risks and planning ahead

Medicine Made Simple Summary

For some people with advanced kidney failure, dialysis may not feel like the right choice. It could be due to age, other health conditions, or simply wanting to focus on comfort rather than ongoing hospital care. This article explains what happens when you decide not to start or to stop dialysis, what medical and emotional support is available in India, how to plan your care, and how families can prepare. The goal is to help you understand your options clearly, reduce fear, and make informed decisions that respect your values and quality of life.

When Dialysis No Longer Feels Right

Dialysis is a life-sustaining treatment that replaces some of your kidney function by removing waste and extra fluid from your body. For many people, it extends life and improves comfort. But dialysis is not a cure—it only manages the symptoms of kidney failure. It also demands time, energy, and adjustment to a new lifestyle.

Some people, especially older adults or those with multiple health issues like heart disease, diabetes, or cancer, may reach a point where the treatment feels more burdensome than beneficial. This is a difficult and deeply personal situation. Understanding your options and what to expect helps you make decisions with confidence rather than fear.

What Happens If You Don’t Start or Choose to Stop Dialysis

If dialysis is not started, the kidneys will continue to decline in their ability to remove toxins and excess fluids. Over time, this leads to a buildup of waste in the blood—called uremia. The symptoms vary from person to person but can include:

• Fatigue and weakness
• Loss of appetite and nausea
• Swelling in the legs or around the eyes
• Shortness of breath due to fluid in the lungs
• Itching and confusion in advanced stages

In India, doctors sometimes refer to this approach as conservative kidney management (CKM). This means focusing on relieving symptoms and maintaining comfort rather than using dialysis to prolong life. CKM is not “doing nothing.” It is a structured approach that includes careful medical management, counseling, nutrition adjustments, and supportive care.

Conservative Kidney Management (CKM) Explained

Conservative kidney management involves:

1. Medical symptom control
Doctors manage complications like high potassium, fluid overload, nausea, anemia, and itching using medications and diet adjustments. The goal is to keep you as comfortable and active as possible without dialysis.

2. Fluid and diet planning
Patients work with dietitians to control symptoms through a balanced diet low in salt, potassium, and phosphorus. Proper hydration management helps reduce swelling and breathlessness.

3. Emotional and psychological support
Refusing or stopping dialysis is a major emotional decision. Counseling for both patients and families is critical. Hospitals in India now have clinical psychologists or palliative care teams who help people cope with anxiety, guilt, and fear.

4. Palliative and hospice care integration
This includes managing pain, breathlessness, and discomfort with medications. The focus is on quality of life rather than aggressive treatment. Many Indian hospitals now have palliative care services for kidney and cancer patients.

How Long Can Someone Live Without Dialysis?

Life expectancy without dialysis depends on how much kidney function remains, how severe the symptoms are, and what supportive care is provided.

For patients with very low kidney function (less than 10%), life may range from a few weeks to several months. However, those who follow a well-managed conservative care plan often live longer and more comfortably. The key is early symptom management and emotional support rather than waiting until the body is very weak.

Understanding the Risks and What to Expect

When a person with kidney failure decides against dialysis, certain symptoms will gradually worsen. It’s important for both patients and families to know what to expect so that they are prepared.

• Fluid buildup: can cause breathlessness or swelling. Doctors may prescribe diuretics or oxygen support.
• Fatigue and weakness: rest and light activity can help, and medications can reduce tiredness.
• Confusion or drowsiness: toxins in the blood affect the brain, leading to sleepiness, confusion, or disorientation in later stages.
• Nausea and vomiting: medications can relieve these symptoms, and dietary changes can reduce discomfort.
• Loss of appetite: common in end-stage kidney disease; caregivers should not force eating but focus on comfort.

Importantly, pain is not a dominant symptom in most kidney failure patients. What causes distress is breathlessness or fatigue, which can be managed through palliative medicines.

How to Talk About This Decision with Your Family

In Indian families, discussing refusal of treatment can be emotionally charged. Families may feel guilt, fear, or confusion about whether they are “giving up.” Open communication helps reduce these feelings.

Start the conversation early. Bring your nephrologist, primary care doctor, and a counselor into the discussion. Ask:

• “What happens if we continue dialysis?”
• “What happens if we stop?”
• “What symptoms can we expect, and how will they be managed?”
• “How do we ensure dignity and comfort?”

Doctors usually appreciate when families express a clear goal—whether it’s comfort or longevity—and align care accordingly.

The Role of Palliative Care in India

Palliative care in India is expanding rapidly and is not limited to cancer. It focuses on relief from symptoms, stress, and emotional burden—irrespective of whether the patient is terminally ill.

Organisations like Pallium India, Indian Association of Palliative Care, and major hospital chains now offer home-based or outpatient palliative support. These services can include:

• Home visits by nurses and doctors
• Pain and symptom management
• End-of-life planning
• Counseling for family caregivers

Palliative care does not hasten death—it helps ensure comfort and dignity during the natural process of illness.

Legal and Ethical Aspects in India

Choosing not to start or to stop dialysis is legally and ethically acceptable in India when done with full understanding and medical guidance. The Indian Society of Nephrology (ISN) supports shared decision-making, where doctors and families decide together based on the patient’s best interests.

It’s important that this decision is documented in medical records after proper counseling. Some hospitals have advance care planning documents or Do Not Resuscitate (DNR) forms that can be discussed and signed. These ensure that your wishes are respected even if you become too ill to communicate later.

Planning Ahead: Advance Care Planning (ACP)

Advance Care Planning means recording your preferences about medical treatment, life support, and comfort care. It can include:

• Whether you wish to receive dialysis in the future if your condition worsens
• Preferences for hospitalisation or home-based care
• Who should make decisions if you cannot speak for yourself

In India, ACP is still an emerging concept, but doctors increasingly recognise its value in chronic kidney and cancer care. Families can ask their nephrologist or hospital social worker to help create a simple written plan.

Financial Considerations in India

Dialysis is expensive when done long-term. Each session may cost ₹1,500–₹4,000 in private hospitals and around ₹500–₹1,000 in government centres. That totals roughly ₹15,000–₹30,000 per month for in-centre dialysis.

Conservative kidney management can reduce these costs significantly by focusing on medications, periodic doctor visits, and home-based care. Government programs like Ayushman Bharat, ESIC, and state health schemes cover dialysis in many cases, but not everyone qualifies. For some families, conservative care may be the more affordable and sustainable path.

Supporting Family Caregivers

When someone refuses dialysis, the family often bears emotional and caregiving responsibilities. Caregivers should not hesitate to seek help. Many hospitals offer family counseling, and NGOs like CanSupport, Pallium India, and Sneha Sandhya (Visakhapatnam) provide helplines and home support.

Caregivers can:

• Learn basic symptom relief techniques (like positioning to ease breathing)
• Keep communication open with doctors for emergencies
• Take short breaks and seek support networks to prevent burnout

Myths About Stopping or Refusing Dialysis

Myth 1: Stopping dialysis means giving up on life.
Truth: It means prioritising comfort, dignity, and quality of life.

Myth 2: Without dialysis, death will be painful.
Truth: With proper palliative care, symptoms like pain and breathlessness can be managed effectively.

Myth 3: Doctors will be upset if you refuse treatment.
Truth: Ethical guidelines support patient autonomy. Most nephrologists respect your decision if it’s made after full counseling.

Myth 4: Families can’t legally stop dialysis.
Truth: Indian medical law allows patients and families to decline or discontinue treatment when it no longer aligns with the patient’s goals.

A Compassionate Approach to the End of Life

If you or your loved one chooses not to have dialysis, it is not a sign of defeat—it is a sign of understanding what matters most. Many people find peace knowing their final days are spent at home, surrounded by family, free from the discomfort of hospital visits.

Doctors, nurses, and palliative care teams can guide you step by step so that you can plan meals, medicines, and emotional care appropriately. Every person deserves the right to make an informed choice and to be cared for with compassion and dignity.

Conclusion

If you or a loved one are considering stopping or not starting dialysis, speak to your nephrologist and ask for a conservative kidney management or palliative care consultation. Do not make the decision in isolation. Discuss it with your family, document your wishes, and plan your care early. Comfort, peace, and dignity are possible—even without dialysis—when you have the right medical and emotional support.