Advance care planning means having discussions with family and friends, especially your Substitute Decision Maker/Delegate.   

 A Substitute Decision Maker/Delegate is the person or people who will provide consent or refusal of consent for care and treatments for you if you are not mentally capable to do so for yourself.  

Advance Care Planning can include discussions with your health care providers to ensure that you have accurate medical information on which to make decisions (consents) or to express wishes about future care and treatment. It can also include writing down your wishes, and may even involve talking with legal professionals. It is a way to give those who will be required to provide consent for your medical treatment and care the confidence to make decisions on your behalf when you are mentally incapable to do that for yourself. 

You may never need your advance care plan—but if you do, you’ll be glad that it’s there and that you have had these conversations, to make sure that your voice is heard when you cannot speak for yourself. 

Advance care plans are not only for those who are living with a life-threatening illness. Having an advance care plan means that even if you are without warning unable to speak for yourself regarding your treatment preferences, someone can do so for you.  

An Advance Care Plan is more than a document outlining your wishes for care at the end of life—it is also a conversation that you have with the person or people who will act for you if you cannot speak for yourself. It means thinking about what is important to you and what you value. It means talking to your loved ones about these things. Reflecting on your values and having these conversations will help you, your loved ones and anyone that will act as your Substitute Decision Maker/Delegate talk to health care professionals about difficult decisions that may have to be made about your care at the end of life or when you are seriously ill and cannot speak for yourself. 

Having these conversations and making a plan are ways to give your Substitute Decision Maker/Delegate the confidence to make decisions on your behalf. It is how we care for each other. 

In Nova Scotia anyone who is capable of understanding written information and the outcomes of their choices can make a Personal Directive. (Including mature minors). If you do not prepare a Personal Directive that names your Substitute Decision Maker, the law determines who that will be. 

Research indicates that patients who have end-of-life conversations with their doctors and family members are much more likely to be satisfied with their care, will require fewer aggressive interventions at the end of life, place less of a strain on caregivers and are more likely to take advantage of hospice resources or die at home.  

A 2008 study found that the absence of advance care planning, in all its forms, was associated with worse patients’ ratings of quality of life in the terminal phase of the illness and worse ratings of satisfaction by the family during the terminal illness or in the months that follow death. 

A 2010 Canadian study of hospitalized, elderly patients identified that providing more support for end-of-life conversations and advance care planning will have a large positive impact on improving end-of-life care in Canada. 

In Nova Scotia, the Personal Directives Act sets out the law around how you determine how your personal care decisions, including health care decisions are made. A Personal Directive is a written document that expresses your wishes. The Act also describes how you can name a person to make decisions for you if you are incapable of doing so—commonly referred to as a substitute decision maker.  

In Nova Scotia the legal term for this person is a ‘delegate’.  

Named Delegate

If you name your Substitute Decision Maker in your Personal Directive—that is, the person you identify as being able to make health and personal care decisions for you, this person is known as your Named Delegate. Named Delegate is the term used in the Personal Directives Act, however this person is often referred to as simply a Delegate. This person will make decisions on your behalf if you become incapable of doing so. Personal care decisions include decisions about nutrition, hydration, shelter, clothing, hygiene, comfort, recreation, support services, health care and placement.

Your Substitute Decision Maker/Named Delegate must follow any instructions you may have written in your personal directive. There are some exceptions to this. If you express a different wish to your Delegate after you have written your personal directive, they must follow that. Or, if medical advances or technologies change that may cause you to express something different, or circumstances change and had you known them you may have expressed a different wish, your Delegate must consider these changes. 

If you do not have any written instructions, your Delegate must make a decision they believe you would have wanted based on what they know about your values and beliefs and any other wishes. If your Delegate does not know what you have wanted, they must act in your best interest.  

You can only name one person to be your Delegate. However, you can delegate different kinds of decisions to different people. For example you can designate your spouse to make health care decisions for you, but you can designate your sister to make the decision regarding nursing home placement or personal care decisions. You can also instruct your Delegate to consult family members or friends before making a decision. If you wish, you can also designate someone to act as an alternate for your Named Delegate, in case your Named Delegate cannot be reached or is no longer capable of making decisions for you. 

Your Delegate can be anyone you wish, a neighbour, friend, relative, spouse etc. However, they must be over the age of 19. This person should know you well, be willing and able to make complex decisions on your behalf and be able to be contacted. 

Statutory Decision Maker 

If you become incapable of making decisions for yourself and you have not named a Delegate to make decisions for you, and you do not have a written personal directive in place, the Personal Directives Act provides a Substitute Decision Maker for you. This person will be known as a Statutory Decision Maker. The Act sets out a hierarchy of relatives that will be asked to make decisions for you. They can make decisions in relation to three areas: health care, placement in a continuing care home and home care services. They must make decisions based on knowledge of your wishes, your values and/or verbal instructions. If they do not know your wishes, they must base the decisions on your best interest. 

If you need a Statutory Decision Maker, your health care providers will follow the list of relatives in the hierarchy until they find an adult who has been in contact with you over the last year and is willing to make decisions for you. The list is as follows:

• Anyone designated as your legal guardian by the courts
• Spouse
• Child 
• Parent
• Person who stands in the place of a parent
• Sibling
• Grandparent
• Aunt or Uncle
• Niece or Nephew
• Other relative
• Public Trustee (public government organization)

If you do not wish to name anyone to make decisions for you, but want to set out certain instructions for health care providers to use, you can write down the instructions and/or talk to your health care providers. However, it is very difficult to write instructions that are specific to every situation. If your instructions are unclear or not applicable to a specific situation then your health care providers would turn to your Statutory Decision Maker.