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Living Well with Chronic Kidney Disease

Steps to advance care planning

Creating an advance care plan involves thinking, learning, choosing a substitute decision maker, recording future wishes, and updating your plan when needed.


The first step is for patients to think about what is important to them. This is the time to reflect on values, beliefs, and wishes for care. As the patient, thinks about what brings meaning to your life. Consider any worries or fears about your health and condition. During this time, think about friends and family and how decisions of care may affect them.  Reflecting on values and considering loved ones will help make the right plan of care in the final days of life.


Living with any illness, like chronic kidney diseases can raise many questions about care and treatment. Discussing with healthcare providers about your medical condition can help patients make informed decisions about their plan of care. This may include asking what to expect from their illness and what their life may look like months from now. Learning about illness outcomes can help patients and families plan for major changes ahead of time.  When planning ahead, it is important to learn about the different forms of treatment. Being informed can help patients decide which treatment is best for them and their health.

Choose your substitute decision maker

In Ontario, everyone has a substitute decision-maker (SDM). A substitute decision maker is a person who makes healthcare decisions when the patient is unable to do. A substitute decision maker is the patient’s closet living family member. This may be a spouse or partner, parents, siblings or living relatives.

Another option to choosing a decision maker is appointing an attorney for personal care. This person has the priority and highest ranking when making future healthcare decisions. This person could a family member, or a close friend you trust.

Record your future wishes to care

Recording wishes to care does not have to be written. However, choosing to record your wishes in writing or video can be helpful to your substitute decision maker. Advanced care planning wishes do not only include treatment decisions. It may also include, specific treats to care at the end of life. Patients may wish to include playing a certain piece of music or having a special ritual performed.

In case of a sudden injury or illness, there are medical procedures that may prolong life. These procedures include mechanical ventilation and tube feeding. It is important for the attorney of care or substitute decision maker to understand these alternatives when making decisions that are best for the patient.

Update your plan and substitute decision maker

Overtime, patients may find that their healthcare decisions may change with the changes in their health. It is important to share these thoughts and wishes with the substitute decision maker when planning for care. If these wishes were written down, it is important to update the recorded plan as well.

Considering values can help patients make informed healthcare choices. Here are a few values to help inform important life decisions:

  • Hard work/ dedication
  • Spirituality