Before we get started, I want to make sure you are in the right place.
This article is meant for you if you are making medical decisions on behalf of a person living with dementia and they did name a medical decision maker in a legal document such as a “Medical Power of Attorney” form.
If your person did not name a medical decision maker in a legal document, you want to hop over and read this article (click here) dedicated to families in this situation.
Ok, let’s dive in.
Making decisions on behalf of another person is not easy.
It is natural to want help when making big life decisions for someone else. There is nothing wrong with this.
However, doing this in a group has the potential to bring in other layers of complication as I’m sure you can imagine.
In my time in the ER I have seen families come together and things go relatively smoothly.
I have also seen discussions and attempts to come to a decision go off the tracks due to family dynamics.
Let me break down what you’ll want to think about ahead of time, discussion points that need to be had, and ways you may want to consider looking at things.
If this helps you, I want you to leave me a comment with any further questions around this topic you would like me to speak to. Join my email newsletter to be able to email me these questions as well. You can sign up here.
The goal of this post is to get you thinking about logistical issues so you can communicate better with your family and work towards making a plan for your person.
Let’s go through this step by step.
First I want you to double check that your person did choose someone as their medical decision maker in a legal document.
Directly ask your person living with dementia if they have created this form and where it is.
While you’re at it, if they are capable of having the conversation, ask your person who they chose and why.
If they have decision making ability, a term called capacity, and they want to update their form, get this done as soon as possible.
We know that people living with dementia will eventually lose their ability to make their own decisions and will not be able to fill or update forms like this.
It is time sensitive.
If your person is no longer able to help you in the search, go on a hunt.
Search in filing cabinets, drawers, cabinets, their computer. Ask your family members if they know where it is or if someone has a copy. Where does your person keep their important papers?
You are looking for a healthcare medical power of attorney form. Know that it may be called something else in the state where you live. Health care proxy and health care surrogate are other terms sometimes used.
I commonly use the term “medical decision maker” for this reason.
Google the term for the “legal medical decision maker” in the state where your person was living when they would have created this form.
If you can not find a physical document, call and speak to an attorney they worked with in the past to see if they created one with your person.
When you find the form, read it.
If your person declared and named a person they want to make their medical decisions, that decision needs to be respected.
We are going to assume the form was done when the person could still speak for themselves and that it is a legal document in your state.
If the person named is not you, I think it wise to ask them a few questions.
If it is you, ask these questions of yourself and make sure your family members know your answers.
How you begin a conversation discussing the document will depend on what will work for your family, but it could benefit everyone to hear their answers at the same time.
Consider a Zoom call, group phone call, or FaceTime chat.
Have a conversation as a group or individually. In one sitting or over multiple conversations.
Everyone who wants to be involved in helping advocate for your person living with dementia should know that the person was named in a legal document.
Ask the person named, or yourself, the following questions.
1- Did you know you were named?
Conversations with family or friends about what we want if we can not speak for ourselves are not easy to have. Sometimes a person is named and never told.
Side bar.
Do not do this in your own life.
When you choose your medical decision maker and name them in a legal document, at least tell them what living means to you and if you value the quality of your life or the length of your life more.
Don’t leave them in the dark about what is important to you.
If you do so you run the risk of having medical care you would not have wanted, or not receiving care you would have chosen for yourself.
2- Did you have a conversation with our person living with dementia about what is important to them surrounding their healthcare decisions?
If they say yes, remember that they may have been chosen for a reason.
I have seen family members try to “steamroll” the named medical power of attorney.
If someone in your family was named, and had a conversation with the person about what was important to them regarding their life and healthcare decisions you need to respect this.
When in the role of medical decision maker, it is not the person’s job to choose what they want or what is best for them.
To be clear, we assume the medical decision maker has a brain capable of learning and applying information to their person’s situation. Their job is to use this ability to speak on behalf of the person living with dementia as they would speak for themselves.
3 – Do you feel comfortable taking on this responsibility?
This is a loaded question.
If someone has never been in this role before, did not know they were named, or never had the opportunity to speak with the person living with dementia about what was important to them, it might make them feel put on the spot.
To understand the role of medical decision maker and to avoid the most common mistakes I see people making, consider reading and sharing these blog posts I wrote.
They will be beneficial for your entire family to read.
Here is the link to part one 10 Mistakes to Avoid as Medical Power of Attorney – Brittany Lamb (blambmd.com) and part two 10 Mistakes to Avoid as Medical Power of Attorney – Part 2 – Brittany Lamb (blambmd.com)
4 – Do you think you will need help in making decisions? Would you like to have help?
This is a key question. If they did not have a conversation with the person who is living with dementia it is very likely they will want help.
I have also seen medical POAs who did not feel comfortable making any decisions on their own even when they were specifically chosen.
As part of this discussion you will also want to ask and determine:
- Do they want other people to help weigh in for ALL decisions or on an as needed basis when a clear choice is not obvious to them?
Why do you need to ask this? Because logistically making real time decisions can be challenging. It is hard to connect a group of decision makers emergently.
Remember, if this person feels comfortable having the final say, they have the legal power to do so and do not need to call anyone for approval.
If they do not feel comfortable, you as a family will need a process for how to help support them.
2. Who does the decision maker want to be involved in helping them?
This is also a very important question.
Keep in mind the following:
Even if the person living with dementia never had a conversation with the person they named as their decision maker, they did choose them.
There may have been some thought behind this choice.
Maybe they knew this person would be able to take in other people’s opinions and points of view and apply it to their situation best.
Maybe they knew this person had a strong sense of what they wanted and could handle the family dynamics when making medical decisions.
They could have felt this person would be able to make a tough choice in the moment, staying more objective than other family members or people in their life.
They may even have told this person, do not allow [insert family member name] to make my medical decisions.
Go through the above process. Work through questions 1 - 4 documenting the answers and decisions made.
These questions can help spark conversation between family and help to identify who might need to be involved to support the legally named medical decision maker.
It also helps everyone in the family to know this person was named in a legal document which gives them the legal right to the final say in decision making if they feel comfortable in doing so.
If you're reading this and thinking to yourself, “I found the form and the person named is someone who is not capable of doing this job anymore,” this is incredibly common. Read on.
I see this all the time.
Often the person declared on a form is no longer able to do this job, or quite frankly, doesn’t want to.
It happens quite often with spouses because of their own worsening health conditions, diagnosis of dementia, or a current health crisis.
Sometimes a spouse simply will not act as a decision maker in the moment because they are too emotional. I often see a component of denial and the request for more help from family because of this.
The most common issue I have seen with adult children no longer wanting to act as decision maker is when they become less involved for some reason.
Often a move separating the parent from the adult child is the cause.
If other family members have stepped in with more of an active role in the day to day, the adult child who is the legal medical decision maker on paper can be left not feeling as comfortable and defers to these family members when a decision needs to be made.
The same situation can happen when the person living with dementia moves away from their legal medical decision maker.
People named as the medical decision maker also could have passed away.
So what happens next?
To be fair it’s a bit of a logistical and practical issue.
You should know a little bit about the situation from the medical perspective.
Emergency medicine physicians and other professionals on staff in the hospital are used to taking care of patients who cannot make their own medical decisions for whatever reason.
When we reach a fork in the road in the person’s care and we’re trying to figure out which pathway to go down, we look in their chart for who is listed as their medical power of attorney (or whatever it’s called in our state).
That is the person we reach out to because this is the legal procedure.
A person has to sign their own medical power of attorney form, so we believe calling the person named in the document to be what the person who we are caring for wants us to do.
I can tell you it often becomes very clear, very quickly, either during an “in person” conversation or on the phone, that the medical power of attorney is not comfortable, does not want to, or is not capable of making their person’s decisions.
When they are capable, but they don’t want to, we can not force them to choose.
What happens next depends on the family situation of the patient.
Practically speaking, the family members who want to be involved are usually people who have a legal right to make that person’s decisions.
Most commonly this means the spouse and adult children. When there is no spouse or adult children it could be siblings, nieces and nephews.
A legal guardian would “trump” all of these people in case you were wondering.
There are rules in each state on who has a legal right to make a person’s medical decisions even if they did not name anyone in a legal document.
It is typically a hierarchy based on blood relation with the exception of spouses. Spouses typically have the right first, followed by adult children.
Look this up for your state if you are in this situation.
Let’s talk about who I recommend NEEDS to be involved in planning and real time decision making on a practical level?
You are reading this article because you will be making decisions with your family.
I assume this is for one of three reasons.
1 – The legally declared decision maker can not do the job anymore.
2 – More than one person was named on the form.
3 – The legally declared decision maker does not want to make decisions on their own.
In these situations those who have a legal right to make their medical decisions ideally would be involved in planning and in making decisions in real time.
Why is this?
There is a practical reason behind me telling you this.
Generally speaking, a physician helping you make treatment and care decisions as a family is not going to be as comfortable if the decision options are gray and the family members are not on the same page.
Physicians have different levels of risk tolerance. Especially physicians working inside of the hospital where decisions often affect the person’s life going forward.
Remember the default in medicine is to provide care and treatment to people to keep them alive until we are instructed not to.
Advance directive documents like the Living Will rarely tell us what to do in the specific medical situations our patients’ face, thus treatment decisions are left to family members.
When there are multiple family members involved and family can not come to an agreement, the person living with dementia is likely to receive the most conservative care which will in many cases prolong their life.
This is why I recommend family members who have a legal right to make decisions for their person openly communicate ahead of time and create a plan for their person together.
This is the ideal situation and will not work for every family.
Those who have a legal right and would be willing to take another family member to court to contest a decision made should be involved.
Otherwise, practically speaking, those who have a legal right AND WANT to be involved should be included.
What to do if your person living with dementia declared a medical decision maker and that person, or person(s), can not do the job or wants help.
I recommend you give family members the opportunity to voice whether or not they want to be involved ahead of time.
Make sure they all realize, if the legally named decision maker is capable of making the decision and their name is on file with the hospital, they will have the opportunity of the final say.
The goal is for everyone to be united with the goal of supporting the decision maker and when possible to help the decision maker create a plan. We’ll talk more about this further on.
Look back to question #4 above. Who do they want to help them make decisions?
Each family member named should be asked;
“Will you help [insert name of legally named medical decision maker(s)] with making medical decisions, yes or no?”
Keep in mind what the decision maker said they would want as far as help goes.
Keep a record of who says what. Write down their responses so you can remember what people said and the date they were asked. You might need to remind them what they said in the future.
If the legally named decision maker(s) CAN NOT do the job, go to each family member who has a legal right to make decisions and also consider talking to those who deeply care about the person living with dementia who would want to help plan and make decisions on their behalf.
Ask these people if they want to be involved in making medical decisions or not.
Again record their responses.
Do not forget to include this person.
The primary caregiver should be involved in planning and decision making whenever possible, but you’ll want to keep in mind a few things.
Earlier in my career I used to think it was wrong to have the medical decision-maker not be the person who is the primary caregiver.
Experience has changed my opinion on this.
I can think of multiple examples where the primary caregiver was, to be honest and bunt, too emotionally invested in the person.
When you care for someone or are their primary advocate and around them frequently, it can be easy to lose sight of the big picture and not be able to see them objectively anymore.
Not recognizing that their quality of life has changed and that they would want their goals of care to change. The primary care partner often struggles the most with the emotions of the situation.
This is why in some families the primary day-to-day caregiver is not the best person to make the medical decisions.
On the flip side, when the person who is making medical decisions does not routinely see the person they are choosing on behalf of, there are also issues with this.
Especially when they don’t understand how the person is functioning.
Someone who does not see the person frequently, who does not see the day-to-day issues, will be less likely to consider how health care decisions could affect that day to day.
People who are not living with the person can be too objective and sometimes they’re not objective enough. It depends on the family and the dynamics.
Now that you have an idea of who will be involved, there are four decisions you need to make as a family.
1- Who is going to be the point of contact for the hospital your person already goes to or would be taken to?
This is often called the emergency contact or point of contact.
There should be back up people listed as points of contact in the person’s electronic medical record.
The person who is the medical power of attorney (legally declared medical decision maker) needs to be one of them and designated as such in the medical record.
Ideally the initial point of contact could get to the hospital quickly if needed.
You want to have someone able to get there quickly in case decision making would be easier with having eyes on your person.
Having someone there in person will improve communication with your person’s care team and help your family better advocate for their person.
It would make sense if the emergency contact was the legally declared decision maker, but it does not have to be. This will not work for every family.
Here is a tip for you to prepare yourself and your family.
Google the number to your person’s local hospital. Put the number into your phone.
Learn to recognize the first 6 numbers as the hospital calling.
To logistically make sure the right people are listed in your person’s electronic medical record as points of contact, might depend on hospital policy.
If your person’s primary doctor is affiliated with the hospital and the records communicate, you might be able to work through the doctor’s office to have this information updated.
You can also have it updated if your person goes to the ER or stays in the hospital.
Consider calling the hospital ahead of time and inquiring about how to make sure this information is listed correctly. The operator should be able to connect you with the appropriate department.
How many decision makers should there be?
2 – When making decisions as a family, it is my opinion that you do not have more than three decision makers.
One of them will be the legal decision maker if that person can still do the job.
Choose one to three ultimate or primary decision makers.
These people ideally should work well together.
What is most important is that they all agree to speak on behalf of the person living with dementia.
They need to agree to analyze the situation, the options available, and to choose treatments/care that the person would choose for themselves.
“Too many cooks in the kitchen” is a saying for a reason.
Too many people involved, especially if the decision needs to be made quickly, will make it less likely to happen.
It is also naïve to think an entire family is going to get together in the moment to talk it out.
Someone will inevitably be flying, on vacation off grid, sick themselves, sleeping, in the midst of another personal, family, or work crisis and not at a point where they can handle another decision.
It is hard to do. Trust me on this. I see these issues every day.
What can you do to prepare to come together and decide?
3 – Decide what the process will be for communicating with family members when something happens.
Here is an example to spark an idea for you.
Mom is sent to the hospital. The hospital calls the point of contact.
If this person is not the primary medical decision maker, the point of contact calls the primary medical decision maker(s).
If they are a primary medical decision maker, they call the other one to two people chosen to help with decision making.
Choose one person for the point of contact or a medical decision maker to notify who will be the disseminator of information to the rest of the family.
It could be the point of contact, but the primary decision makers should be left to use their time to speak with medical staff and to think through the decision options to choose what is best for their person.
Create a group thread for text message updates while decision making in or outside of the hospital is happening.
One thing you have to discuss and determine ahead of time.
4 – Can a decision be made without input from the other primary decision makers?
My recommendation is to allow any of the three primary decision makers to make the final decision if the team needs it now. Especially if there is not the time to call or attempts have been made and they can not reach the other decision maker(s).
This is not as common as having thirty minutes to an hour or so to make a decision. In these cases, or with more time available, you could set an expectation that the decision makers would try and reach each other first before making the call.
I feel confident in recommending this because I see what happens when people do not make this decision ahead of time.
I have seen it result in care the family ultimately felt the person living with dementia would not have wanted.
Remember the default decision is to do more when a decision can not be made.
It is extremely common that not all primary decision makers can be reached when a real time decision is needed.
What if something happens in the middle of the night?
Many of us keep our phones on silent or Do-Not-Disturb.
Do-Not-Disturb is a valuable tool for focusing, but could mean not being reached in time.
I’ve also run into families being stuck not being able to make a call because of a decision maker traveling in an airplane.
I have a solution for your family to feel confident with any one of you making a choice without input from the others when necessary.
Keep reading and you’ll learn about it.
But first,
What if you have identified the people who will be involved in decision making, but you can not get them to talk with you about planning for the future?
I would try to figure out why they don’t want to discuss these things with you.
There is likely an underlying reason.
The way I see it you either identify it, work to address the root cause, and help them get past it, or you set a boundary with them.
Not having time can not be the reason. Set a meeting on the calendar.
Waiting until something happens should not be an option.
The person living with dementia is going to have a change in the way they live.
They will need unplanned medical care which could help or harm them depending on the situation.
Planning on their behalf is time sensitive.
It does not need to be done all at once, but you need a path to follow.
Just like all challenging or uncomfortable situations in life, getting started is half the battle.
Once you start, each decision you make will make the next easier.
If the person is struggling emotionally, not ready to talk about things, or to be involved in planning, let them know they can be filled in on what has happened and the decisions made, if they choose to rejoin in the future.
However, you and the rest of the family involved are going to move on and press forward without them.
In doing so you all may learn things that this person will not learn which could affect the decisions you make.
You as a family have decided to learn and plan so you can speak on the person living with dementia’s behalf.
If the family member who is hesitant does not want to be a part of that or can not it is OK, but they will not be allowed to come in at the last minute and derail the plan.
They can ask questions and state their feelings, but they will not be allowed to overrule the family’s plan for the person because they did not join in the planning process.
This is a boundary you are setting for yourself and the people planning in your family.
You will not allow another person’s emotions, lack of preparation or learning to derail what you have planned for your person.
Make sure they understand the reason behind becoming educated and creating a plan is to make sure your family is informed and can choose medical treatments that go in line with what the person living with dementia would choose for themselves.
You are doing this for the person living with dementia because they can not do it for themselves.
Leave it at that.
These are all important conversations to have, but what happens after you have them?
What should your family do next?
You’ll want to identify your person’s goals of care and create a medical decision plan for them.
These are not things your person’s doctor or their care team are going to help you with because they do not have time.
This is what I do to help dementia family members online.
If you’ve never heard of “goals of care” I encourage you to read my previous articles with this listed in the title to understand why I stress this so much. You can not make any medical decisions on behalf of another person without having this figured out.
For the steps on creating a medical decision plan, you can ask your family to listen to the 5-Step audio training I created.
It is an hour long training discussing the steps needed to confidently speak and create a plan on behalf of your person. Step #3 is determining goals of care.
If you or they would prefer to read the highlights of this information read this blog post.
What I want you to realize for yourself, and share with your family, is that your person can have their own individualized decision plan for the future.
You can learn what can be done when they have trouble with infections like urinary tract infections or pneumonia, or when they have another medical problem like a fall, stroke, heart attack, or atrial fibrillation.
Your person’s decision maker(s) can have a written plan for the most common medical decisions they face. Other family members involved can review and discuss it ahead of time.
My online course “Make Your Plan with Dr. Lamb” teaches you what you need to know to make your person’s plan. It covers the 5 Steps in much more detail.
Step #5 is about teaching yourself what medical issues your person is most at risk for.
The course includes Step #5 done for you.
The medical issues that happen to people living with any disease causing dementia are known. We know how they are treated and how the treatments can be affected by the fact that the person is living with dementia.
In order for you to choose the treatment best for your person in the moment, you and your family need to be informed of the options.
I teach the treatment options for the most common medical issues your person faces due to dementia, but also because they are an aging adult.
You purchase the course once and can log into as many times as you want as long as you need. You will use what you learn in your own life as well.
As an ER physician, I often have to ask family members to make quick decisions sometimes right after we have met or when I still have them on the phone.
Inside the course I will teach you a process to follow when you are asked to make any medical decision on behalf of your person.
There will be decisions that will allow you time and can allow for more conversation, but many can not. I teach the questions you need to ask and what you need to consider for the major decisions your family faces.
As a family having one or more of your family decision makers go through my course will give you all more peace of mind to know the person making a choice is doing so according to a plan and process you are following as a group.
You can read about the course and enroll here.
If you sign up and want another family member to go through the planning process with you, send me an email and I will get you a coupon code to use to make the course $97 for each additional family member.
When you’re ready, I’ll see you inside!
Until next time, all my best,
Brittany Lamb, MD