End stage kidney disease can cause major changes in your life. Dialysis treatment and transplantation do require lifestyle changes that are difficult for some people.

Although quality of life can be good for people who are otherwise in good health, some can find dialysis a burden. This is often due to the effects of other illnesses, such as a stroke or a heart attack.

In such cases, supportive care (also called non-dialysis care or conservative care) can be the preferred form of treatment.

If you choose to let life progress naturally, you will be supported with medications, dietary advice and assistance to reduce the symptoms of your kidney disease. A palliative care team can also provide end-of-life support.

When making the decision about treatment, it’s important to remember that the choice is yours.


The meaning of supportive care

Supportive care means not having dialysis. Instead, diet and medication are used to manage the symptoms of kidney disease.

Supportive care does not artificially extend your life. Your doctor, kidney healthcare team and perhaps a palliative care team can support you to live as independently as possible until the end of life. Most people stay well until the last two months.

Palliative care teams are experts at controlling symptoms such as itch and pain. Referral to a palliative care team does not indicate that life will soon end but they also provide support to you and your family as end of life nears.

An important part of supportive care is planning for the end of life with your family. Advance care plans, wills and delegating power of attorney are part of this process.

Why choose supportive care

If gradual worsening of health and a loss of independence make the reality of dialysis overwhelming, or you just don’t want a complex treatment, then supportive care may be for you.

It’s important to know that if you have other diseases, the length and quality of life may be the same with or without dialysis. If you are unsure, it can be possible to try dialysis for a short while to see if it is suitable for you. You will need to talk to your doctor about the options.

Talking to a social worker, counsellor or your spiritual adviser can also be helpful.

Your rights

It is your right to decline dialysis if you think the burden is greater than the benefits. 

Some Australian states have laws to ensure people can decline or stop treatment if that is their wish. However, it may be hard for family or medical staff to accept this decision.

Advance care planning is a process where you can document your preferred wishes. This includes appointing a medical power of attorney or guardian who knows your wishes means that someone chosen by you will make decisions on your behalf when it is needed.

It can be helpful to involve family members, close friends, a social worker or spiritual adviser and your doctor in discussions about your reasons for not wanting dialysis.

Links to fact sheets and other helpful information can be found here: Resources

Coping with emotions

Finding out you have end stage kidney disease can be a shock and cause a strong emotional response, which can cloud judgment.

Many people suffer a degree of depression at some stage. It’s normal to feel sad and anxious at times; however, if this persists and starts to affect your everyday life you may need support.

If you are feeling depressed and finding it difficult to make a decision about treatment, share your concerns with others. Professional advice is available from your doctor, a psychologist, psychiatrist, social worker or counsellor.

You can find out more about support for depression and anxiety here

Stopping dialysis

Stopping dialysis treatment is the cause of death for one in four people who have been on dialysis, particularly those who are elderly or have other health conditions.

Some people on dialysis can become acutely unwell and may have no choice but to stop. Dialysis is an artificial process and it is acceptable to stop.

The decision to stop dialysis is yours alone, but it is advisable to chat to your family and healthcare professionals about your preferences and wishes.

Not returning to dialysis after a transplant fails

A kidney transplant can offer better quality of life, but the drugs used to prevent rejection can lead to infections or cancers. The treatment for some cancers is to stop the use of immunosuppressant drugs, which causes the kidney to be rejected. A decision then needs to be made whether to start dialysis again.

If you have developed other health conditions or do not want the burden of dialysis, you can choose supportive care as your preferred form of treatment.

Links to fact sheets and other helpful information can be found here: Resources

Appointing enduring guardians

An enduring guardian is someone you legally appoint to make personal or lifestyle decisions on your behalf. They must act in your best interests.

Your enduring guardian will only take over if you become unable to make your own personal or lifestyle decisions as a result of your health condition. 

You can choose which decisions you want your enduring guardian to make, and you can have different guardians for your health decisions and for your financial decisions, or they can be the same person.

Each state has its own regulations and forms to support this process. You can find out more here.

Prepare a formal written plan for your healthcare with your doctor. Each state has different documents for this. They are known as advance care directive forms or advance care planning forms and you can find out more here.

Links to fact sheets and other helpful information can be found here: Resources.

Preparing for the end of life

Deciding to choose supportive care can indicates it may be time to begin advance care planning to prepare for the end of life.

Overall planning may include the following steps:

  • Write a will.
  • Prepare a formal written plan for your healthcare with your doctor. Each state has different documents for this. They are known as advance care directive forms or advance care planning forms.
  • Appoint someone to hold enduring power of attorney (medical treatment) to make medical decisions when you no longer can.
  • Appoint someone to hold enduring power of guardianship to manage your financial affairs when you no longer can.
  • Make a list of your financial records, such as bank accounts, real estate details and insurance policies.
  • Appoint someone who can settle your estate, such as a solicitor, accountant or executor of your will.
  • Let people know your end-of-life preferences, such as burial or cremation and the form of service.

It is also advisable to involve local palliative care services, earlier rather than later, as they can help manage your symptoms and other end-of-life planning for you and your family. Some people access palliative care well before the end of life in order to reduce their symptoms.

You can find links to palliative care services here

Links to fact sheets and other helpful information can be found here: Resources

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