Making Decisions About Your Care
When you have advanced chronic kidney disease, it is important to think about your wishes, values and beliefs for your care now and in the future. Having conversations about your care makes it easier for your healthcare providers and your care partners to understand your wishes.
These open and honest conversations are also important to make sure you get the support you need throughout your treatment. You and your care team will need to make many decisions about the type of treatment you wish to have. In these conversations, you will learn about different treatment options and their advantages and disadvantages.
Goals of Care
A conversation about the general aims and priorities you have for your medical care
Your healthcare providers may include a nephrologist (kidney doctor), nurse, social worker, family doctor and others. You and your healthcare providers will talk about:
- the nature of your illness
- what is important to you during your treatment or care
Some examples may include keeping up with your social life, going to an important family function, or staying independent for as long as possible.
The goals you share with your healthcare providers will be used to help you make decisions. Your substitute decision maker should also know your goals. They are the person(s) legally allowed to make decisions for you if you are unable to do so.
Your healthcare providers will record your goals and use them when talking to you about treatment decisions. Together, you and your healthcare providers can change your goals at any time.
Treatment Decisions and Informed Consent
A conversation about your current treatment
When you have advanced chronic kidney disease (CKD), staying informed about treatment decisions is crucial so you can make choices that support your care goals. These conversations can start in multi-care kidney clinics early on in your kidney care journey.
Examples of treatments for people with advanced CKD include:
- lifestyle changes – to help you stay as healthy as possible
- medicine – to control associated problems, such as high blood pressure and high cholesterol
- dialysis – treatment to replace some of the kidney’s functions
- kidney transplant
A substitute decision maker is someone who is legally allowed to make healthcare decisions for you if you are not capable of making decisions yourself. Informed consent means you understand what you are giving permission for. It may be explicit (verbal or written) or implied (not directly stated but understood from actions or the situation).
In Ontario, anytime a healthcare provider offers you treatment, you or your substitute decision maker must give informed consent for that treatment. To get your informed consent, healthcare providers must give you information about:
- what is involved in the treatment
- expected benefits, risks and side effects
- any different treatment options
- what may happen if you refuse the treatment
Not everyone will want or need the same type of treatment. You and your healthcare providers should make the treatment decisions together based on your wishes and goals of care. Your treatment decisions will then be used to create a treatment plan.
A treatment plan is a summary of all the treatment decisions you make with your healthcare providers. It is based on your goals of care and includes information about the treatment you may need, and what treatment you would want or not want based on your current illness.
If you have questions about your treatment or would like a copy of your plan of treatment, please talk to your healthcare providers.
Advance Care Planning
A conversation about your future care
Advance care planning helps you think about what is important to you, and lets others know what kind of care you would want in the future if you were sick and unable to communicate.
Advance care planning involves confirming your substitute decision maker and discussing your wishes, values and beliefs with them. This helps prepare your substitute decision maker to make future care decisions for you if you cannot do so yourself. Although you may be able to make decisions about your care at the beginning of your chronic kidney disease journey, your ability to make decisions for yourself can change over time.
If you do not choose a substitute decision maker and are unable to make decisions during your care, your closest relative or relatives will be asked to make decisions for you. This can include your spouse, child, friend or another trusted individual.