Decision Making and Capacity Assessment
In keeping with our theme of caregiving, decision-making, and guardianship, at the latest Death Literacy YEG Meetup we discussed in more detail what the spectrum of capacity looks like, and how that may impact planning for and setting up the various levels of decision-making.
When we speak about someone’s capacity, we’re referring to their ability to understand relevance, cause, and effect of their decision-making. This includes understanding the consequences of not making a decision.
Respect for autonomy
We can use the ethical principle of Respect for Autonomy as a guideline when we’re determining how to support those who need us. Respect for autonomy means providing all the relevant information needed for good decision-making. It means allowing the person to decide on their own how they’d like to proceed, without coercion or outside direction.
Remember, the assumption is that the adult has capacity until a formal assessment indicates otherwise. It’s also important to note that the individual has the right to refuse a capacity assessment. Until proven otherwise, they’re a grown up and you’re not the boss of them!
Supporting this person means you make/help them make decisions in their best interest. The least restrictive/intrusive options take into consideration:
- their wishes, values, beliefs
- effect on quality of life/condition
- risks and benefits of each decision
Regarding health care decisions, you and the individual you are supporting should discuss whether:
- the condition/quality of life is improved by the proposed plan
- the benefit of the proposed plan/treatment is greater than the risk of harm
- a less restrictive/intrusive Plan B might be as effective/beneficial
One’s capacity is measured on a continuum. Therefore, so too does your level of caregiving. Matching the level of decision-making with current capacity is the best approach for all involved. It allows the person in need of decision-making assistance to retain as much autonomy as possible and alleviates the unwanted burden of too much responsibility from the caregiver. Finding control is what helps us power through our resistance to change, so it should always be a focus of these discussions, and foremost in your mind.
1 Supported Decision Making
This is useful for capable individuals with communication barriers (e.g.: first language is not English or has mild disability). It is a less formal level of assistance, used when someone needs a wing-person to get the information with them. Keeping in mind respecting their autonomy, you help lay out the facts, and help the individual think through and communicate decisions.
With the Privacy Act, in some cases, you need a formal document stating you can be in on the conversation. Check with the professional you are going to be speaking to (e.g. to a pharmacist about potential drug interactions), or with whichever governmental service department you will be interacting with to see which form they may need.
If you live in Alberta for example, the Supported Decision-Making Authorization (SDMA) through the Office of the Public Guardian and Trustee (OPGT) allows an individual to approve a few people they trust (the supporters) to help with his or her personal decisions. The form is available online at https://www.alberta.ca/supported-decision-making.aspx.
2 Co-Decision Making
This option is appropriate when you have a strong positive relationship with the person you are supporting (e.g.: partner supporting spouse, or BFF supporting injured BFF). Used when the person is assessed as significantly impaired but still maintains consent over decisions. It can be put in place from some or all decisions.
In Alberta, a Co-Decision-Making Order (CDMO) is what allows an individual to consent to a Court order appointing you as a co-decision maker. CDMO’s are issued by the Court of Queen’s Bench. Further information is available online at https://www.alberta.ca/co-decision-making.aspx.
3 Specific Decision Making
Used in emergencies, when someone suddenly loses capacity and has no personal directive or guardian. It allows a health care provider (e.g. a physician, nurse practitioner, dentist), to select someone for time-sensitive health care or temporary admission and discharge decisions.
In Alberta, information is available online at https://www.alberta.ca/specific-decision-making.aspx
In this category there is also emergency decision making. This is for when someone needs urgent care to preserve their life, to prevent serious harm, or to alleviate severe pain. A physician steps in when someone lacks capacity or refuses to consent to emergency health care due to drug/alcohol impairment, complete or partial lack of consciousness, for example.
A Guardianship Order is used when an individual does not have the capacity to make decisions about personal matters. Usually a family member or friend acts as a private guardian and is given authority for some or all personal decisions. If no one is able, willing, or suitable, the Public Guardian may act
In Alberta, Guardianship Orders are issued by the Court of Queen’s Bench. Further information is available at https://www.alberta.ca/adult-guardianship.aspx
Resources for Albertans
As always, I recommend you seek professional advice before you make any major decisions about life/end of life planning. Take the time before you need to to get informed. Shop around, have conversations. Get used to talking about the What If’s.
Service Alberta website (People in Care): https://www.alberta.ca/people-care.aspx
The capacity assessment process in more detail: http://seniorsnetworkcovenant.ca/wp-content/uploads/DMCA-Implmentation-Toolkit-Feb-2019-v8.1.pdf
Pages 18-22 list the assessment questions, broken down into:
- health care
- educational activities
Guide to Capacity Assessment under the Personal Directives Act: https://open.alberta.ca/dataset/e9b8da0e-1292-481d-98be-75412b01876c/resource/717ce3b5-4735-45be-9a1b-b39760f1a2f2/download/opg-personal-directives-publication-opg1642.pdf
Guide to Supported Decision-Making: Protecting Individual Rights and Reducing the Risk of Elder Abuse (Alberta Seniors and Housing): https://open.alberta.ca/dataset/52c3f56b-570c-48c7-903e-a63a5070b031/resource/ca1b9206-960a-4513-a7a0-7467e4803ab2/download/25164-guide-to-supportive-decision-making-elder-abuse-web.pdf
Quick Reference Guide to Adult Guardianship: https://www.albertahealthservices.ca/assets/info/hp/agta/if-hp-agta-quick-ref-hcp.pdf