What is advance care planning?
Advance care planning is a process of reflection and communication, a time for you to reflect on your values and wishes, and to let others know your future health and personal care preferences in the event that you become incapable of consenting to or refusing treatment or other care.
Advance care planning means having discussions with family and friends, especially your Substitute Decision Maker – the person who will speak for you when you cannot. It may also include writing down your wishes, and may even involve talking with healthcare providers and financial and legal professionals. A written advance care plan may also be called an advance directive or a medical directive. This depends on your province/territory. Check out the resources specific to where you live.
Advance care planning may include thinking about information about treatments that you do or don’t want to have (such as CPR or mechanical ventilation), as well as other information about your care at the end of life (for example, religious rituals, being able to see a family member, dying at home or in palliative care, etc.).
What is a Substitute Decision Maker?
This is the person(s) who will make medical decisions on your behalf when you are incapable of communicating your wishes because of illness or injury. They will give or refuse consent to treatments proposed by a health practitioner if you are incapable of consenting yourself. They may also be called a Medical Proxy, a Medical Agent or a Power of Attorney for Personal Care.
How do I choose a Substitute Decision Maker?
It’s important to choose someone who you trust and feel will be comfortable carrying out and communicating your wishes. Don’t forget to have the conversation – it’s important that your Substitute Decision Maker knows about their role and your wishes.
When does this planning come into effect?
Your substitute decision maker is only called upon if you are unable to make your own health care decisions (e.g. you are in a coma or your illness has impaired your ability to make decisions). Also, any written documents/plans are only referred to under these circumstances. If you have a written document, your substitute decision maker can use it to guide your care and advocate for your wishes.
Can my plans change?
You can change your plans as often as you like. Just make sure that the person representing you understands your wishes and has a copy of your most recent written document(s).
What happens in an emergency where I can’t communicate and the hospital doesn’t know about my Substitute Decision Maker?
Make sure that your Substitute Decision Maker and your doctor have a copy of any written documents and that others know who will act as your Substitute Decision Maker should an emergency occur. Check out the resources specific to where you live. Our downloadable wallet card can be used to document the name and contact information for your representative in case of an emergency.
I have a Living Will – isn’t that good enough?
A living will usually refers to a written advance care plan. (It is actually an American term and is not commonly used in Canada.) While you may have a written plan, it’s also important that you have a conversation with those who will make decisions about your care – they may have questions about your wishes. You should also review your written advance care plan regularly to be sure that it still reflects your feelings, beliefs and values about end of life care. Each province and territory has different laws and forms for writing down your plans. Check out the resources specific to where you live.
Doesn’t my doctor have the final say about my care?
Your doctor can provide valuable advice to you and your family about treatment, but needs to know about your beliefs, concerns and wishes to provide you with the care you want to receive at the end of life. Everyone has the right to make decisions about their own health care.
Who should I talk to about my wishes?
Talk to the person who will represent you (your Substitute Decision Maker), and with other family and friends. You should make your wishes known to your doctor/other health care providers as well as your lawyer.
My family will know what to do - why do I have to write it down?
You may believe that they know what to do – but perhaps they don’t. For example, you may have said something like ‘pull the plug if I’m a vegetable’ – but you need to be clear about what that really means to you. Your family may also have questions about the choices that you’ve made. Don’t forget to tell your family who will be your Substitute Decision Maker – the person who will speak for you if you can’t.
Advance care planning is only for old people, right?
You can’t predict how and when you’ll die. You can make your plan at any time, and change it as often as you like. But don’t just write it down – the most important thing to do is to have a conversation with the person who will make decisions for you when you can’t (your Substitute Decision Maker). That person may also change during your lifetime.
I don’t want to be kept alive like a vegetable, but I also don’t want to die in pain. What should I do?
If you reach the point where you no longer want life-saving care, you will still always receive medical care such as pain-relieving medicine and other comfort measures.
I don’t want a family member to represent me – I’d prefer to have my friend speak for me? Is this legal?
Laws about advance care planning and Substitute Decision Makers vary across Canada. Documents such as Powers of Attorney for Personal Care or Representative Agreements allow you to appoint any individual as your Substitute Decision Maker. If a decision must be made when you are not capable to do so, the person you appoint as your attorney/representative would be the decision maker. If you do not appoint someone, most provinces and territories have a priority list of who they would turn to – usually a family member. There are, however, also provisions for your friend or neighbour to be appointed to replace a family member. If you have made your wishes known but feel that a family member may not respect those wishes; you should consult with a legal professional to discuss your plan.
What if I change my mind?
Our lives and the people around us – change over time. You will want to review your advance care plan regularly to be sure it still reflects your wishes. Remember, your substitute decision maker will only speak for you and use your advance care plan if you cannot speak for yourself.