Caregiving, Guardianship, and Levels of Decision Making

In the last post we talked about caring for caregivers. We discussed how to use change management strategies to find control through difficult changes. We reviewed the three key components to helping us find control in changing situations: 1) stakeholder engagement, 2) communication, and 3) learning new ways of doing/being.

As a result, some of you have been asking a very important question:

How do I manage change with a parent or partner who is losing capacity for independent decision making?

How do we approach a very difficult conversation with our loved one…

• When they’re making poor decisions that have lasting impact.
• When their health care professionals only see them on their good days.
• When they won’t acknowledge that every day is not a good day.

How do we convince a loved one that asking for and accepting help is not a weakness? How do we shift focus to a future state of collaborative support from the fear of loss of independence and control? Because we all know what happens when we cannot find where we have control in a change, amirite! Resistance is futile, but very very real, my friend.

What’s the solution?

First of all, as with all change, we need to take a moment to see how we’re feeling about it. Once observed, we have the ability to address whatever particular emotions are springing up to make our lives…interesting. So take a deep breath and check in with yourself.

Good. Now let’s begin. First, we have to be realistic. Change is inevitable. Whether it is a temporary illness or injury, or it’s the onset of a more permanent condition, something is going to change for everyone involved. If we are lucky, we will have time to prepare, time to work up to the big stuff. If we are not so lucky, or if we have chosen to ignore that the change is happening, we may have to make some decisions on the fly. Never the best solution.

Planning for the inevitable decline of someone’s health is never an easy thing to do. But trust me when I say it’s less uncomfortable than being unprepared when the time finally arrives.

Build Resilience

Even with something as ominous as the impending decline of someone’s health, if we plan well, we can build our resilience through change baby steps. Resilience is a muscle, so we begin with light weights and many repetitions. That’s how we build up to the heavier, weightier changes, without pulling a brain muscle!

There are various and increasing levels of decision-making control for caregivers to consider when planning for the future. Start out as early as possible with a collaborative option. Have a plan to move to more control later on as needed and only when necessary. This approach gives both the caregiver and the person anticipating loss of capacity more time to process and troubleshoot impending changes.

Know Your Levels of Decision-Making

In order of least to most decision-making power, here are your options:

1. Supported Decision Making
2. Co-Decision Making
3. Specific Decision Making
4. Temporary Guardianship
5. Full Guardianship

Here’s an overview of each to equip you with some basic knowledge of your options. As always I recommend you seek professional advice before you make any major decisions about life/end of life planning. These are the options in Alberta. Other provinces/states may have similar structures.

1. Supported Decision Making

• Like a personal directive, but less serious/formal
• There’s a regulated form, and you can appoint up to 3 people to assist with decisions
• Works best before adult loses capacity, but still needs assistance

The nice thing about supported decision making is that it gives both parties the opportunity to try out the change on something smaller under less stress. Because the individual still has capacity, there is an opportunity to communicate, to collaborate more, and to strategize on future decision making.  It’s also the perfect time to gather information and important documents that may be needed down the road.

2. Co-Decision Making

• Still a consensual agreement
• Court application and order is required
• Works for when the person may have more significant impairment, but still has capacity with some help

3. Specific Decision Making

• For emergencies: when someone temporarily lacks capacity, (eg: accident, injury, or illness)
• Used when admitting someone to a health care facility temporarily, for example
• Generally a health professional determines if that person can/cannot provide informed consent
• Health care professional chooses nearest relative or Office of Public Guardian (OPG)
• If it’s an emergency, health care provider makes decision in place of relative/OPG

This level of guardianship is more of a standalone, as it can be used for reasons other than declining capacity. Such an emergency does, however, allow you the opportunity to review the caregiving strategies in place to see if they’re adequate and sustainable if need be.

4. Temporary Guardianship

• An expedited guardianship process, used when someone lacks capacity AND is in imminent danger of financial loss, harm, or death
• Court application and order is required
• Has a time limit, with the expectation of replacement with full guardianship

5. Full Guardianship

• Implemented after much consultation with health care professionals that the adult lacks capacity, which is presumed until proven otherwise
• Court application and order is required
• Decisions are always based on what’s best for the person under guardianship
• Autonomy is maintained wherever possible

Regardless of the level of support you are providing, always keep detailed records. Include what was done and when, associated costs, and the outcome and follow up.

Be Proactive

And finally, remember to plan for and have important conversations early and often. Good change takes time and lots and lots of communication. Much like funeral pre-planning and other end of life preparations, we avoid facing the inevitable because it is uncomfortable. But better to begin now than to wait until you have no choice. It’s the loving thing to do.

Resources

Alberta’s Office of the Public Guardian and Trustee (OPGT) has educational material, forms, help with forms, and other resources to help you and those you are caring for. Resources for other provinces/territories can be found on each provincial/territorial government website.

Caregivers Alberta can connect you to support, education, advocacy, and community as you learn to navigate the system.