Advance care planning

Information for patients and their families - Sunnybrook Nephrology Program

What is advance care planning?

Many people on dialysis say they feel better knowing that they talked with their family and/or health care provider about their wishes for the future. They say that:

• They feel a sense of control over their future.
• Have peace of mind.
• Know they have made sure that they will be taken care of with dignity and respect.
• Feel they will be less of a burden to their family who will not have to make difficult decisions on their behalf.

All these decisions are called “advance care plans” which is simply planning for your care before you need it.

Dialysis is a life sustaining treatment but it is not a cure. Most people with kidney failure may develop or have other diseases or conditions that get worse over time. At some point, you could face failing health and, as everyone does — the end of life.

Advance care planning is a process of personal reflection about your end of life wishes and then action. It can help you take control of your care by telling your health care providers and someone you trust about your wishes and the type of care you want as your disease progresses. This will also make it easier for them to make decisions for you if you become too sick to make them yourself.

How to get started

Many people on dialysis say they don’t know where to start when it comes to deciding what should be in their advance care plan. When you talk about it with your family or health care professional think about what is really important to you about your life and health.

Here are some questions to think about:

• How do you feel about your current health and life?
• What do you value about your health and life now?
• How important is it for you to be:
  • Independent and self reliant?
  • Able to recognize family and friends?
  • Able to talk and understand others?
  • Able to live without a lot of pain?
• Are there any situations such as permanent unconsciousness, severe dementia, or severe stroke in which you would not want to be kept alive with a breathing machine or a feeding tube, or other measures?
• Are there any situations in which you would want to stop dialysis?

If you feel strongly about any of these issues, talk about it with someone close to you (a family member, social worker, friend, or clergy) then think about including this in your advance care plan.

Advance care planning in the Nephrology Program

The Sunnybrook Nephrology Program will be working with you to:

• Provide education on advance care planning;
• Document your wishes for care in the future; and,
• Ensure your voice is heard and your wishes are respected.

We acknowledge that the information we are asking of you is very personal in nature and we want to ensure you that all measures will be taken to protect your confidentiality and privacy during this process.

To accomplish this each patient will be asked to provide us with the name of the person you would like us to speak with about your care, in the event that you are unable to do so (Substitute Decision-Maker).

We will also collect and document any future care wishes you would like us to respect in the event of a medical emergency, such as a Power of Attorney for Personal Care.

Advance care planning is an ongoing process that can and will change over time, and therefore should be reviewed on an ongoing basis.

Commonly used terms

Substitute Decision Maker (SDM)

An SDM is a person with the legal authority to make decisions about treatment options on your behalf when you are incapable of making care decisions.

This can be someone you choose, as in the POA for personal care described below, or it can be from a list of people identified in the health care consent act (ranking of family members).

Power of Attorney (POA) for Personal Care

This is a formal legal document that identifies who you would choose to make care decisions for you in the event that you become incapable of making them.

Resources

• Guide to Advance Care Planning at ontario.ca/seniors or call the Ministry of Health at 1-800-268-1154
• Power of Attorney Kit from the Ministry of the Attorney General

If you would like more information on advance care planning please contact your Nephrologist or Social Worker.