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 not name a medical decision maker in a legal document such as a “Medical Power of Attorney” form.
If your person did 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 medical decisions on behalf of someone else is not easy.
Wanting help when making big life decisions for someone else makes perfect sense.
Acting as a group can bring in many potential 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 article 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 article is to get you thinking about potential logistical issues so you can avoid them and work as a group towards making a plan for your person.
Let’s go through this step by step.
First I want you to double check to make sure your person did not choose someone as their legal 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 would choose to speak for them now and why.
If they have decision making ability, a term called capacity, and they want to update or create a 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 at a certain point.
It is time sensitive. You can read more about medical POA forms when it comes to dementia by clicking here.
If your person is no longer able to help you in the search, or can not tell you where the form is, 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.
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 and have it on file.
If you're reading this and thinking to yourself, “My person definitely does not have a document like this on file. Who is going to make their decisions?,” please know this is incredibly common. Read on.
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 are 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 our thought process is to assume the person named in the document will know what to do because our patient chose them to speak on their behalf.
What happens if there isn’t a person listed depends on the family situation of the patient.
First, you should know if a decision maker was not named in a legal document, family members do have the legal right to make their person’s decisions.
There are rules in each state on who has a legal right without a 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.
If a legal guardian has been named by the court system they would trump a spouse or any other relative.
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.
There is a legal hierarchy of who technically has the strongest right to choose, but your family is doing this together.
In these situations, those who have the strongest legal right to make their person’s medical decisions ideally would be involved in planning and in making decisions in real time.
Why is this?
There is a practical reason.
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 involved 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.
I’ve seen the spouse not agreeing with the adult children or the siblings unable to get on the same page with each other. The one thing they can agree on is that they can not come to a decision. The person with the highest legal authority is often not willing to go against the group and decide.
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.
What do I think works best in real life?
Family members who have a legal right AND WANT to be involved should be included during planning and decision making.
Keep in mind the people making decisions need to learn for the person living with dementia, speak for them, and be capable of putting their emotions aside when necessary to make tough choices.
I also recommend you give other family members who have been involved the opportunity to voice whether or not they want to help in planning or may also want to weigh in when a decision needs to be made.
The goal is for family members to be united in supporting the chosen decision maker(s) in creating a plan. We’ll talk more about this further on.
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.
Think back to the family members your person is close with, would confide in, could have had previous conversations about what was important to them.
These family members who do not have as “strong” of legal right to make decisions on behalf of the person (grandchildren, nieces, nephews, siblings of the person living with dementia) could be very helpful in knowing what the person living with dementia would say.
Go to each family member who fits this profile AND to those who have a legal right to make decisions.
Ask them individually if they want to be involved in making medical decisions or not.
If so, are they willing to help learn and plan on behalf of the person, support the decision maker as best they can, and help to make decisions which would reflect what the person would choose for themselves?
Write down your family members’ responses so you can remember what they said and the timing of when they were asked. You might need to remind them of what they said in the future.
Do not forget or leave out the following person.
The family member(s) providing the person’s day to day care, especially if they live together, 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 or care partner.
However, I’ve now changed that view point because I’ve seen multiple situations where this person was, to be quite honest, too emotionally tied to the person living with dementia.
When you care for someone routinely while living together, 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 the person as objectively anymore.
Not recognizing that the person’s quality of life has changed and that this would make their goals of care change, is a struggle primary care partners often have due to their emotional attachments to the person.
This is a common reason why the primary day-to-day caregiver may need help in making their person’s decisions and might not want or be able to do this alone.
On the flip side, when the person who is making medical decisions does not routinely see the person they are making decisions for, there are also issues with this.
Primarily 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 the person has will be less likely to consider how health care decisions could affect the person’s day-to-day quality of life.
This could lead to more or less care than what the person would choose for themselves.
Family member’s emotional attachments often influence their decisions.
People who are not living with the person can be too objective and sometimes they’re not objective enough. It depends on their relationship with the person and the dynamics of their family.
The emotional side of making medical decisions on behalf of your person needs to be considered.
To recap, we want to involve:
- Family members involved in day-to-day care and advocacy of the person.
- Those who have a legal right to make decisions and WANT to be involved, and
- Any additional supporting family members who will help the group plan and stay focused with the main objective.
The main objective is to learn on the person’s behalf, create a plan for them ahead of time, and then speak on their behalf when making choices.
Once you have an idea of who will be involved, there are 4 decisions you need to make as a family.
1 – Choose one to three primary decision makers.
In my opinion it would be best not to have more than three decision makers.
These people would in an ideal world work well together.
They will be the people who will make decisions in the moment and have the final say.
Importantly they should all agree to speak on behalf of the person living with dementia.
They should be capable of analyzing the situation, treatment options available, how those options would affect the person on a day to day, and ultimately to choose treatments/care the person living with dementia 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.
But it is also naive to think an entire family is going to get together in the moment to talk it out.
Someone will inevitably be flying, “off grid” on vacation, sick themselves, sleeping, or in the midst of another personal, family or work crisis and not at a point where they can handle another decision.
Pick one to three people to make the decision in real time discussing with and relaying it to the medical care team.
From my perspective as an ER physician, preferably these would all be people with a legal right to make the person’s decisions. Consider one of them being the day-to-day care partner or advocate as well.
For the spouse and any adult children who have legal rights to make their person’s medical decisions, who for whatever reason would not be in this group of primary decisions makers, you’ll want to make sure they are on board with who is chosen.
They should be involved with the planning process if they want to, so they know this group of primary decision makers is going to make decisions that fall in line with their person’s goals of care.
Other family members who said they wanted to be involved, can weigh in when time allows and when asked to help.
They can offer support through the planning process.
They will also be able to step in and act as a decision maker if one of the primary people chosen goes out of town or is unable to be in this role. Why? Because they have been involved with planning.
Simply put, if the doctor asks if the family is on the same page and would agree to the plan that is being decided, you want the answer to be yes.
You want to know that the other family members will support the primary decision makers.
When a legal decision maker was not chosen by the person living with dementia, deciding who is going to logistically fill this role should be one of the first decisions made by a family.
I’m not an attorney. If you have a complicated family situation, consult with one.
2- Who is going to be the point of contact for the hospital?
This is often listed in their chart as the emergency contact.
I recommend someone who lives nearby and is also a primary decision maker, if possible.
Ideally the point of contact could get to the hospital quickly if needed.
If this is not possible then the person listed should be a primary decision maker.
Inside the medical record there are often many contacts. The person chosen as the point of contact is usually called the emergency contact.
All primary decision makers should be listed as contacts.
Consider having listed other family who has been involved in planning as well.
A practical tip for you…
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.
How to logistically put your points of contact into your person’s medical record, 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 the hospital.
You could consider calling the hospital ahead of time and inquiring about how to make sure it is listed correctly. The operator should be able to connect you with the appropriate department.
3 – Decide what the process will be for communicating with family members when something happens.
Here is an idea of how this might work for your family.
Mom is sent to the hospital.
The hospital calls the point of contact aka the emergency contact. They make their way to the hospital if needed and:
1 – If they are not a primary decision maker, they call the primary decision maker(s).
2 – If they are a primary decision maker, they call the other one to two people chosen to help with decision making.
Ahead of time you’ll want to choose one person who will be the spreader of information to the rest of the family.
It could be the point of contact for the hospital, 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 messaging while decision making in or outside of the hospital is happening.
4 – Talk about this: Can a decision be made without input from the other primary decision makers?
My recommendation is to allow any of the three decision makers to make the decision if the team needs it now and there is not the time to call or attempts have been made and they can not reach the other primary 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 primary decision makers would try and reach each other first before making the call.
I feel confident in stressing the need to decide on this because I see what happens when people do not make this decision as a family ahead of time.
I have seen it result in care that 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 decision makers are able to be reached when a real time decision is needed.
These days, people often do not answer their phones right away.
Do-Not-Disturb is a valuable tool for focusing but could mean not being reached in time.
I work night shifts in the ER. Many of us keep our phones on silent in the middle of the night, totally reasonable.
I’ve also run into families being stuck not being able to make a choice because of a primary decision maker was traveling in an airplane.
Ideally everyone involved in planning and decision making would understand who can make the call if others can not be reached. It needs to be discussed openly and agreed upon.
Remember we want a family to be on the same page. We want to support the primary decision makers.
Once you have made these decisions it is time to move on to the planning phase.
But first let’s address something that happens all the time.
What if you have identified family members who want to be or will be involved in making medical decisions, but they don’t seem to want to talk 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 it, and help them get past it or you set a boundary with them.
Not having time to talk to you about or engage in planning is not OK.
The person living with dementia is certain to have a change in the way they live over time and to also need more access to medical care.
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. Getting started is half the battle. Once you start, each decision you make will make the next easier.
Set a meeting on the calendar.
If it’s not a lack of time, it could be too emotional for them.
Having to think and then speak about someone you love changing, becoming less independent over time, and not being able to make their own decisions is sad.
Considering decisions about the person’s care which could determine whether they live or die, but also affect the way they continue to live, could be too much for some family members.
If the family member is not ready to talk about things or to make a plan let them know that they can be filled in on the planning process if they choose to rejoin in the future, but that you and the rest of the family are going to move on and press forward without them.
In doing so, you may learn things that this person in your family will not be learning. The medical knowledge you gain will likely 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 change 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 learning and planning process.
This is a boundary you are setting for yourself and the people planning in your family.
You will not allow another family member’s emotions, lack of preparation, or learning to derail what you have planned for your person.
Make sure they understand that you are committed to creating a plan on behalf of your person living with dementia because you want to be informed and choose medical treatments that go in line with what that person 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 for now.
So you’ve identified who will be involved in decision making and are ready to move forward. 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.
There are only three goals to choose from and we all fit into one of the three of them with or without dementia.
For the steps on creating a medical decision plan, you can ask your family to listen to the 5-Step audio training I created. Links to sign up are at the top and bottom of this page.
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 about determining goals of care.
If you or they would prefer to read the highlights of this information share 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.
Their primary 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” includes what you need to know to make your person’s plan. It covers the 5 Steps in much more detail.
Learn more about the course by clicking here.
Step #5 in the audio training is about teaching yourself what medical issues your person is at risk for and making a plan for how you will act if they come up.
This is taught inside Modules 5, 6, and 7 inside the course.
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 treatment 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.
I teach 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 and sign up for the course here….
If you sign up for the course and want another family member to take it 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 planning alongside you.
Before you go, I want to leave you with 3 Tips for what to do if you are asked to make a medical decision for your person.
1 – Ask how long you have to make the decision.
This one may seem obvious, but I wish more people would ask me this question. There is often some time even in the ER.
Knowing this can help you prioritize the calls you make next and who you choose to speak to.
In some circumstances it could allow you to speak to another member of your person’s care team.
2 – Ask what could go wrong.
Anytime your person is being treated for a condition whether it is in an office setting, the ER or inside the hospital, I want you to think of the next steps.
If something goes wrong, you’ll have to make more decisions.
Knowing what is potentially coming can allow you to talk with family ahead of time to consider decisions. It may also change your initial decision.
3 – Ask the medical professional to list the options for treatment and how each could affect your person’s quality of life.
People don’t ask me this question either.
What it does is make everyone involved in the conversation consider the person’s future and how our decisions could affect them positively, negatively or neutrally.
Forward thinking is something medical decision makers for people living with dementia must do.
OK that is all for now.
Send me an email brittanylamb@blambmd.com with any questions.
Until next time, all my best to you and yours,
Brittany Lamb, MD