Whatever part of the caregiving journey you are at, know that there are many aspects of the future that you and the one you care for should be talking about, planning for, and creating records of.
"Planning is bringing the future into the present so that you can do something about it now.” Alan Lakein
None of us know what tomorrow will bring, nor can we predict what might become of our health. There may also be ethical and legal issues in advance care planning that should be dealt with early.
By planning early there is a way that we, as caregivers, can ensure that the person we are caring for has a say in the health care decisions that lie ahead, should there come a time when he or she is unable to speak on their own behalf.
Advance care planning is an essential piece of everyone’s future planning and should start now.
Advance care planning is a process, not just a document. It’s a conversation that you have with the person you are caring for and other close family and friends. It’s a way to ensure that a person’s wishes and decisions on the care they receive are honoured at end of life.
What is advance care planning?
An advance care plan is a verbal or written summary of a capable adult's wishes (or instructions) about the kind of care they want or do not want to receive in the future, in the event that they cannot speak for themselves.
Often referred to as “My Advance Care Plan” or “My Voice,” the advance care plan can be written down or simply told to someone who is authorized to speak for the individual, such as a substitute decision maker.
The advance care plan can guide a substitute decision maker if that person is asked by a health care provider to make treatment decisions on behalf of the plan’s author. Advance care planning also helps to reduce stress and conflict.
“The majority of Canadians (52%) indicate that the advance care planning process should begin when a person is healthy, yet only 13% have an advance care plan prepared.”
When it comes to advance care planning, the impact of our decisions, or lack of decisions, can be considerable for both ourselves and our family members. Many people simply avoid thinking about future medical conditions, or putting plans in place that address future medical needs and delicate situations.
The responsibility of making medical decisions for another individual can be overwhelming. If you’re a caregiver or a substitute decision maker, you’ll want to know if the person you’re caring for has an advance care plan in place, and what decisions they have made for themselves about their future care.
Tips for starting an advance care plan discussion
- Choose a comfortable setting—perhaps while out for a walk or a drive, rather than a formal meeting.
- Start the conversation with an example he or she can relate to, such as, “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 for the person (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 the person in your care that advance care planning will reduce the stress and anxiety that others will feel when trying to make these important decisions on their behalf.
Advance care planning resources
A caregiver’s role in advance care planning
When caring for and supporting someone with the advance care planning process, you will need to consider two very important things:
The one you are caring for has the right and freedom to make informed decisions and actions for themselves and this needs to be respected at all times. The need for respect and dignity doesn’t change when a person becomes ill or disabled. Indeed, it may grow even stronger.
As caregivers, we must be careful not to give in to the urge to be “protective” at the expense of the rights of the person in our care.
Remember that the person in your care retains the right to make important life decisions for themselves when it comes to advance care planning unless their capacity for cognitive decision making has been impaired due to a stroke or some other form of brain damage.
It is often quoted: “Among the most important human needs is the desire for respect and dignity.”
As caregivers, we always have the capacity to do the right thing when it comes to making sure that the people in our care receive the same dignity and respect that we all feel entitled to such as:
- A respect for privacy, including emotional and physical privacy
- Respect (and the right) to make our own choices
- To be treated with equal dignity
It is never too early to start advance care planning. As you help the one you care for develop their advance care plan, it is a great time to also start having these conversations with your family and friends.
Take one step this week to begin an advance care planning discussion with those in your life. For some this might be more of a challenge then others. Use the resources included in the links and within this article to help you take the first step and continue with the process.
See also, our Elizz article on How to Develop an Advance Care Plan