During my experiences as a social work practicum student in a hospital in BC, I had the opportunity to witness many families struggling to make health care and financial decisions for loved ones who could no longer speak adequately for themselves. Watching this process really made me re-think my own future planning. A few families told me they’d had previous discussions about what to do in the event of a crisis, but most had not. Some families disagreed about what their loved one would want. Some fought about it. Already difficult situations became worse.
Talking about what to do during times of serious injury or illness is uncomfortable for most of us. There’s a natural human tendency to avoid these discussions or to put them off for another day. Many people think of themselves as too young and healthy to need this kind of planning. Others assume that because they aren’t rich, there’s no need to plan ahead or that no one will fight over what to do for them.
I’ve learned to believe strongly in the value of planning ahead simply because I’ve seen too many people struggle with the results of not doing it. Even the best families can get into disagreements when under stress.
First, let’s look at a few key terms.
- Power of attorney: refers to financial affairs only. Essentially, you sign over control of your financial affairs and decision making to a trusted person. A power attorney must be signed while you are deemed competent and is no longer in effect when you become incapable. POA does not apply to health care decisions.
- Enduring Power of Attorney: The same as a power of attorney, except that it remains in effect once you become incapable.
- Advance directive: instructions written while you are still capable that outline exactly what health care treatment you consent to or refuse. It becomes effective when you are incapable and only applies to the health care conditions and treatments listed.
- Advanced care plan: a summary of your wishes for health care decisions that will be used by your substitute decision maker and health care team to guide the care you would like to receive.
- Incapable: A health care provider determines incapability based on a number of factors. Declaring someone incapable is not a decision made lightly and it is usually temporary except in cases of profound brain damage or advanced dementia.
- Representation agreement (RA): the document in which you name your representative to make health care and other decisions on your behalf when incapable. There are two types:
1. Section 7 RA: You may authorize a representative to make decisions about the routine management of financial affairs, personal care and some health care decisions, excluding decisions about the refusal of life support and/or life-prolonging medical interventions.
2. Section 9 RA: You may authorize a representative to make personal care and health care decisions, including decisions about the acceptance or refusal of life support and life-prolonging medical interventions.
All of these terms can make the process sound really complex. Who wants to spend free time thinking about this stuff and filling in forms, while trying to figure out what everything means?
The good news is that there is help out there. My Voice is a provincial guide to advanced care planning. It includes detailed information about scenarios that will help you understand the issues and choose what you might want. There are forms in the guide that you can fill out to make your own wishes known. You can also find information on the Nidus Personal Planning site.
Some people want to know if they need a lawyer involved. A lawyer is not required to create a representation agreement, although it is recommended if you have a complex situation. If you own real estate, an enduring power of attorney is a good idea and in this case you do need to see a lawyer.
Everyone benefits from having a discussion about future planning and this includes people with disabilities. For example, how much medical intervention would you want? Would you want to go into a care facility? There are no right or wrong answers to these questions but planning ahead ensures your wishes will be followed.
I recently had the opportunity to watch two family members go through the process of making their plans and wishes official. Although it involved discussions about uncomfortable topics, I was glad to see them complete the process because now we know what they want and can make appropriate decisions when the time comes. Many people my age, and especially people with disabilities, are struggling in the role of caregivers to aging parents. Pre-planning can make a huge difference.
If you’re interested in discussing your options around future planning, please do not hesitate to contact InfoLine. Although we cannot give medical or legal advice, we can help you understand the planning tools and terms, and point you in the right direction of more assistance if you need it. Call 1 800 689 2477 or email firstname.lastname@example.org.