Advance care planning bestows the gift of knowledge on caregivers
By Louise Hanvey
It is no secret that caregivers often experience both emotional and physical strain as they try to balance caregiving with other life and work responsibilities. But imagine the extra burden of having a loved who is unable to make decisions about his or her own care. What would you do if the person you care for is taken in hospital and can’t communicate? Do you know his or her wishes for care?
Advance care planning can help your loved ones receive the care they want and reduce unwanted treatments, while giving you the confidence to act on their behalf. It can also make a huge difference to the entire family. Research has shown that advance care planning significantly reduces stress, depression and anxiety among family members and caregivers.
What is an advance care plan?
An advance care plan describes your wishes at the end of life, in the event that you cannot speak for yourself.
The plan may include information about your values, goals and preferences for procedures that you do or do not want, as well as other information about care at the end of life (e.g., religious rituals, being able to see a family member, whether you would prefer to die at home).
The most important aspects of advance care planning are naming one or more substitute decision makers—people who will speak on your behalf and make decisions for you if you are unable to do so yourself—and talking with them about your wishes.
Who should have an advance care plan?
Everyone should have a plan. Having a plan ensures that others know your opinions and that your voice will be heard, even if you can’t speak for yourself. If you are a substitute decision maker, you will want to be sure you have the confidence to put forward your loved one’s wishes if he or she cannot communicate.
Five steps to get you started
These five main steps can help you create a plan with your loved ones.
1. Help them THINK about what’s important to them—for example, what are their wishes, values and beliefs around certain treatments or medical conditions?
2. LEARN together about the different medical procedures that can be offered at the end of life. Some may improve quality of life, while others may only prolong life. What is important to your loved ones? Do they understand the pros and cons of each procedure?
3. TALK about their wishes for care. It can be challenging to start such a conversation. The Advance Care Planning Project from Canada’s Speak Up campaign (www.advancecareplanning.ca) has some great conversation-starters and videos to get the discussion moving. Although they can be awkward, such talks are probably the most important part of advance care planning.
4. Help your loved one CHOOSE a substitute decision maker. This should be someone who is both willing and able to make decisions. The substitute decision maker should know all the details of the advance care plan.
5. RECORD your loved one’s wishes so that they can be shared with others.
The Speak Up campaign has a number of tools to help you start conversations and make your advance care plan, including videos, wallet cards and workbooks. www.advancecareplanning.ca
Talking about the end of life isn’t always easy, and can be challenging for all involved. Here are a few tips for getting the conversation started.
• Choose a comfortable setting—perhaps while out for a walk or a drive, rather than a formal meeting
• Use an example—“Aunt Mary had so many tests when she was in hospital before she died. What did you think about that?”
• Think about the conversation as being about values and wishes, not specific treatments. For example, instead of saying “Do you think you would want CPR if your heart stopped?” Talk about things that would be meaningful (e.g., being at home, being able to recognize people).
• Remember that advance care planning is not just one conversation—so don’t be concerned if you face resistance at first. Remind loved ones that advance care planning will reduce the stress and anxiety that others will feel when trying to make decisions for them.
While you are helping your loved ones complete their plans, don’t forget to do your own. No one wants to leave others with the burden of having to guess about important healthcare decisions. Make sure you share the gift of knowledge—and peace of mind.
Advance care plans and living wills: What’s the difference?
People sometimes use the terms “advance care plan” and “living will” interchangeably. Both include written instructions about the care you would want to receive if you become incapable of speaking for yourself, and about who would talk for you in those circumstances—but that’s where the similarities end.
The term “living will” originated in the USA and has no legal status in Canada. It is sometimes used to refer to a document that describes the care a person would and would not want to receive if he or she is unable to communicate his or her wishes about treatment. If such a document is used in Canada, it may be known as an advance directive or it may be a “wish” (or a series of wishes) incorporated into a power of attorney for personal care. Although the forms and processes vary from province to province, documents such as powers of attorney for personal care are generally used to assign a substitute decision maker (called the “attorney” when appointed through a power of attorney for personal care) to make choices when a person is unable to do so.
An advance care plan is so much more. While it’s a great idea for everyone to write down their thoughts and feelings about the care they would want, it’s even more important to have conversations with others about those wishes—especially your substitute decision maker, family and healthcare team. It’s also a good idea to discuss plans and wishes with your lawyer and others who represent your interests.
A living will is a document that reflects a person’s wishes at the time that he or she creates and signs it. But advance care planning is a process that goes beyond one document, or even one conversation. Life changes, and so may a person’s wishes for care.
Louise Hanvey is Project Manager—Advance Care Planning at Canada/Speak Up. She is a registered nurse with experience in hospital, the community and education.