Medical decision making can be challenging even for healthcare professionals.
Have you been asked to make a medical decision for your loved one and felt like you were doing the wrong thing? Maybe you felt completely unprepared to make the call?
Perhaps you have not been faced with this task yet and are worried you might make the wrong decision.
If you are thinking, “yes that’s me”, you’re not alone.
Every person is unique. Their previous experiences, current and past medical conditions, personality, and values all play a role in how new illnesses or injuries will affect them.
A diagnosis of dementia poses even more of a hurdle to overcome when making decisions.
Medical Decision Making Steps to Take
Here are some action steps and an approach to take to help you feel more confident:
Everyone must be on the same page
First, go and find your loved one’s advanced directive form(s). See what they wrote when they had the ability to choose. Make sure they did not designate someone else to make decisions for them. In that case you should have a talk with that person and the rest of the family members who will want to be involved. It is best to have everyone on the same page if possible.
Loved one’s wishes
If you are the official decision maker, either through a legal document or because it has fallen to you as a default, there is one golden rule throughout this process.
Always refer to what your loved one would say if they were able to see themselves in their current condition and be a part of the conversation.
List of medical conditions
Next step is to make a list of your loved one’s medical conditions.
Think diabetes, COPD, heart failure, kidney disease, cancer, chronic pain. Learn a little about each of them.
Especially pay attention to whether these conditions are curable or not. If not, try to find out how they can worsen over time.
It is important to have an understanding about how they could impact your loved one as the symptoms of dementia progress and at the end of their life.
Having this background knowledge will help you when problems or crises arise– and choices have to be made.
Learn about medical complications of dementia
You will also need to learn about the common medical complications of dementia.
Consider injuries from falls, such as hip fractures or bleeding in the brain. Think about infections such as pneumonia and urinary tract infections. Poor nutrition and dehydration are also very common.
Stop to consider what you would do if your loved one faced one of these challenges. What would they tell you to do if they were able to see themselves and make the decision? Would they want to have surgery or be hospitalized?
Think about how your decisions will change overtime as your loved one’s underlying medical conditions and dementia symptoms worsen.
Quality of Life
Use your loved one’s quality of life as a compass when being asked to make choices.
“Quality of life” looks different for every individual. Contemplate what makes your loved one “them.”
Weighing the positives and negatives in their life can be a valuable exercise as you navigate complex decisions.
Reflect on who they were before the dementia symptoms started.
Perhaps they were a great chef, doting grandparent, gardener, explorer, dancer, avid reader, card game enthusiast, or hobbyist.
They likely can not participate in all their favorite activities now. Hopefully they have new interests or things that make them “light up” and give their life happiness and meaning. These can be helpful considerations.
Know that things are never black and white, and decisions can evolve over time. One common approach in medical decision making, is to allow more aggressive and invasive treatments early on to try and preserve quality of life.
Unfortunately, as their underlying diseases, including dementia, worsen over time, their quality of life will undoubtedly decline.
End Stage of Dementia
At the end stages of dementia it becomes easier to recognize the signs of suffering. They may seem to be uncomfortable, unhappy or not able to enjoy life. They may lose what makes them “them.”
In this stage it is more common to not pursue aggressive treatments or interventions and to focus on keeping the person comfortable.
Think of dementia like a staircase.
The top of the stairs is where they start and the landing after the bottom step is the end of life.
Each step down is a worsening symptom, an illness or an injury they have to face.
Most people with dementia who are faced with a medical challenge to overcome can realistically hope to stay on the current step. Going back up the steps to a better quality of life is very rare.
As the disease progresses, carefully consider the medical decisions you make. Use quality of life, and what that means to your loved one, as the guiding light in making decisions.
Again consider what they would say if they were sitting there a part of the conversation.
Consider All Options
When you are being asked to make a choice, ask the person talking to you what the purpose of the treatment is. What are the other options available?
Ask them to help you consider the ability of a treatment or intervention to preserve or improve quality of life versus simply prolonging life.
Try to better understand what comes next after the treatment or intervention. What can you expect for the future? Could it mean more potential side effects or that they would have to stay in the hospital? Will it be recommended they go to another facility for additional care you can not provide at home?
You Are Your Loved One’s Advocate.
You are capable of making the decision to serve their best interest, especially when empowered with the information and insight discussed in this article. If something recommended is not something they would have wanted, you can say no. You can question whether something will likely improve your loved one’s quality of life. You can ask for more options. Lastly, you can also change your mind.
Remember the disease is what is causing the medical crisis, not you. You will be making the best decision with the information you have at the time on behalf of your loved one.
Empower yourself with as much information ahead of time.
Look at their advanced directives already on file.
Learn about their medical conditions and the complications of these illnesses and of dementia itself.
Reflect on what they would have wanted, what makes them “them”, what “quality of life” means for them.
The more educated you become about the potential complications that are coming, the more prepared and confident you will be when difficult choices arise
About the Author
This article was written by Dr. Brittany Lamb.
She is a board certified practicing Emergency Medicine physician.