In the long-term care setting, we are often called upon to make difficult decisions on behalf of our elders with dementia. Some choices, such as refusing medical care, necessitate a capacity evaluation by a licensed and trained professional. Other decisions are made every day by staff and family members who desire to allow the resident autonomy yet need to keep them safe.
Today’s post is by clinical bioethicist Viki Kind, MA who discusses the use of the shared decision-making model to help residents with dementia and their families make decisions regarding care.
Many caregivers struggle with knowing when and how much to step in to protect the person in their care. It is especially difficult when the person is in the early stages of Alzheimer’s or dementia. As a clinical bioethicist, I have unique tools and strategies to help family caregivers navigate these difficult situations.
The Shared Decision Making Model is one of the tools I teach in my book, The Caregiver’s Path to Compassionate Decision Making: Making Choices for Those Who Can’t. This tool can be used to determine how much your loved one should participate in his or her important life and health decisions. With this tool, you can adjust this process to fit your loved one’s mental abilities as he or she changes over time. If your loved one has fluctuating capacity, you will need to adjust the age range as your loved one’s condition changes each day.
The Shared Decision Making Model states that we should include people in the decision-making process based on their mental age. Whether you estimate your loved one’s mental age or the doctor has given you an approximate age, your answer will fit into one of the following categories. These age ranges will help guide you as you begin to use the Shared Decision Making Model.
Zero to six years old
Seven to thirteen years old
Fourteen to seventeen years old
The way you figure out what your loved one’s mental age is by thinking about what a child would be allowed to do at different ages. (I am never saying that your loved one is a child, it is just a way to imagine how his or her abilities and needs have changed.) Would you leave the person home alone? Would you let them use a knife to butter their bread? Would the person be able to call 911 if there was a fire? Is the person able to remember enough details in order to make an informed and well thought out decision?
Most family caregivers I know either already have an idea of their person’s mental age or can figure it out when thinking about it in these terms. If you are a professional in a nursing facility, you will be able to evaluate for this as you get to know the resident.
And you don’t have to know exactly because these are age ranges, not absolute rules. You can adjust the age ranges up or down a little bit, but be careful about moving the mental age too much or you might end up using the tool in the wrong way.
Here are the basic guidelines of the Shared Decision Making Model. If the person in your care is in the zero-to-six-year-old age range, you will need to make the decisions for him or her because it wouldn’t be safe for the individual to participate in important decisions. If the person is in the seven-to-thirteen-year-old age range, he or she will be able to have a voice in some decisions but will not make the final decision. If the person is in the fourteen-to-seventeen-year-old age range, the individual may have enough capacity to make his or her own decisions.
The second tool that works with the first tool is the Sliding Scale for Decision Making which reminds us that the more dangerous or consequential the decision, the more mental capacity the person needs to have to be including in the decision making process. You wouldn’t allow someone who is six-years-old mentally to choose which nursing facility is right for him but you might allow someone who is mentally sixteen to make the decision or at least share in the decision-making process.
At the same time, you would allow the person who is mentally six to have the power to decide if he would like which activity he would like to attend because that isn’t a serious or important decision to make. The value of this process is it includes and empowers this person to have some control in their life, even when the more major decisions have been made for him.
With these two tools working together, you can evaluate the seriousness of the situation and if the person’s mental capacity changes, you can adjust how much he should participate in the decision-making process. In the nursing facility setting, these tools can give the professional caregiver the confidence to step in when necessary and to step back when it is not a very serious decision and the resident has enough mental ability to make the decision. Caregivers have told me that these strategies have reduced conflicts and improved patient-centered care.
Decision-Making and Dementia: Conversation with Viki Kind, MA
This 40-minute audio is designed for facilities and staff members wishing to learn more about using the Shared Decision-Making Model to address challenging decisions in the long-term care environment. Listeners will learn:
- Ways facilities can help families make decisions on behalf of their loved ones
- How to balance fall prevention with the resident’s desire to walk
- Ways to make good discharge decisions for residents with dementia
- The qualities of an effective ethics committee
- And more
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