If you can’t speak for yourself, Advance Care Planning takes the guesswork out of your care
Advanced care planning (ACP) tools are very important in health care. When put in place correctly, they go a long way towards helping the health care team honour the wishes, values, and beliefs of their patients in their time of need. When a patient comes into contact with the health care system, we need to take direction from the patient themselves.
But when the patient can’t make their own health care decisions (for example, if they have cognitive impairment or dementia and have lost the capacity to make decisions), we rely on ACP tools. As health care workers, we cross our fingers and hope that the patient has provided us with a plan. Ahead of ACP Day on April 16, please consider creating and sharing a plan with your loved ones.
ACP has five steps:
- Think about what is most important to you – your values, wishes and beliefs.
- Learn about your overall health. This may include current conditions you want to better understand.
- Decide on your substitute decision maker(s), one or more people who are willing and able to speak for you if you cannot speak for yourself. [Consider making a representation agreement to ensure they have the authority to do so.]
- Talk about your values, beliefs and wishes with your substitute decision maker(s), family, friends and health care providers.
- Record your values, wishes and beliefs in your ACP Guide, in a letter, poem, video or audio recording.
It’s important to know that although we stress how extremely valuable it is to have your ACP documents completed, there is a default system in BC for the health care team to follow to obtain substitute consent from a patient who cannot consent for themselves.
The Health Care Consent and Care Facility Admission Act outlines a hierarchy of people the health care provider needs to contact in the event someone is required to provide consent on a patient’s behalf to a medical treatment or therapy.
That hierarchy, in very specific order, is:
- Spouse
- Adult children
- Parents
- Siblings
- Grandparents
- Grandchildren
- A relative by birth or adoption
- A close friend or someone immediately related by marriage
If a patient hasn’t completed their ACP, these are the people the health care team needs to go to for consent on their behalf. Everyone should be familiar with this list and the rank order.
What could happen if I don’t participate in Advance Care Planning?
The order of the hierarchy list above may seem reasonable, but if a certain family member isn’t chosen as the decision maker, that hierarchy can feel anything but reasonable.
One example could be if an older person gets married for the second time, and their children aren’t fond of the new spouse. If that adult lacks the capacity to make their own health care decisions, and if there is no ACP in place, we would have to go to the “new” spouse for consent. I have seen dozens of cases where the children in situations like this are horrified that they aren’t the ones who get to decide on Mom or Dad’s care.
Another example is if we have a patient who doesn’t have a spouse, but does have multiple children. The act says that in the absence of an ACP, all the children have an equal right to decide on their parents’ health care. If all the children agree on the care, then this can work out fine. However, if the children aren’t all in agreement about what decisions to make, family tensions can run high.
Another thing to consider is that if you don’t have an ACP and your child has a different belief system or value set than you, you run the risk of not having your wishes respected.
I have also seen patients come into our system with a very close relationship to a friend who they’re very connected to and well supported by; so much so, that the friend appears to be the only person in our patient’s life.
However, if that patient requires health care and they lack capacity to make their own decisions, we wouldn’t be able to take consent from the friend without going through the hierarchy above and contacting other family members first. There are some exceptions when we would not choose someone from the hierarchy; for example, if they’ve had no contact with the patient for 12 months or more or if there is a known dispute between our patient and the family member.
As you can likely see, without ACP in place, there is a great deal of research and work that needs to go in to ensuring the health care team is choosing the most appropriate person to provide consent for the patient when the patient cannot consent for themselves. This situation is less than ideal, and the best way to prevent this is to ensure you’ve done your own ACP.
Where do I start?
ACP discussions may feel awkward to have with your family and friends, but there are ways to make them easier. You can let your family members know you are planning for your own future, and in that plan, you would like their assistance.
You can clearly spell out some of the scenarios you may have given thought to; for example, if you have a family history of dementia and you have certain fears or wishes about how to be cared for if you develop dementia.
These are the kinds of things your family members should know about you. No one can predict the future, but what you can do is predict how you might want to be treated or cared for if certain conditions come your way, such as an unexpected stroke or heart attack.
Of course, the health care system is always going to be there to care for every patient who walks through our doors. But it’s so much easier for everyone involved if we have some insight into who our patients are, what their wishes are, and who the people in their lives are that they trust to support them when they need it the most. This is the value of ACP.
For more information on Advance Care Planning, join Northern Health on April 12, 2022. Two free virtual sessions take place at 12 - 1 PM and 4 - 5 PM PST.
To register, email advancecareplanning@northernhealth.ca before April 8, 2022.
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