As an ER physician, I often have to care for patients who can not speak for themselves.
I believe that every adult in the US (anyone over 18) should name a person, as well as a backup, as their stand-in medical decision maker in the case they are unable to choose for themselves.
Naming someone to be your medical decision maker on a form is not enough.
Trust me on this.
If you, or the person you are making medical decisions for, have underlying medical problems, are aging, or are living with dementia, more steps are needed.
I’ll talk more about this further on in the article.
My goal in this post is to answer questions I often hear about medical power of attorney (POA) forms.
Let’s start by getting a few background points out of the way.
For one, these are legal documents that fall under the category of advance healthcare directives.
Your state or country’s rules on how to name someone as your medical decision maker ”legally” on a form is something you can easily find in a Google search.
If you choose not to work with an attorney, you’ll want to pay attention to your state’s requirements regarding witnesses and notarization.
The same rules apply to you and your person living with dementia (PLWD).
You should also be aware there are several names used for the person who makes medical decisions on behalf of someone else.
Health care power of attorney (POA), medical POA, health care proxy, health care surrogate are commonly used.
Just keep this in mind when you are searching for a form or see an attorney to have one prepared.
To keep things simple, for the remainder of this article I will use medical power of attorney (POA) as the term for this advance directive form.
Even if the form is called something else in the state where you live, the principles we will discuss are the same.
I will use the term medical decision maker (MDM) to refer to the person named on the form who will be standing in to make medical decisions.
OK, let’s move into Q&A.
……..If you have any additional questions after reading, leave a comment in the comment section below. If I can answer, I will add to this post, so we can help someone else.
If someone has dementia, can they fill out a medical power of attorney (POA) form?
Just because someone has a diagnosis of dementia does not mean they can no longer make their own decisions.
Earlier in the disease people will still be able to fill out this form.
To know whether or not your person can do this, you need to know the term “capacity.”
What does capacity mean?
When making decisions, a person who has capacity should be able to;
- Understand why they are being asked to make a choice and how the decision they make could affect them or their situation.
- Be able to compare the available choices, including choosing not to act, and how these different options could affect them. (This is essentially weighing the risks and benefits of the options.)
- Voice their choice and a rationale for why this is what they want to do.
Specific to a medical POA form, the person needs to understand the purpose of the form and what it will mean for them personally by choosing to complete it or not.
To have capacity, they should also be able to explain why they are choosing the person they are naming.
Capacity vs competency, what’s the difference?
Capacity fluctuates. It can come and go.
When someone is sick, injured, or critically ill, they may lose their ability to make decisions.
All humans are at risk of losing their capacity.
People who are aging have a higher risk.
The loss of capacity permanently means someone no longer has competency.
We know this will happen at some point for a person living with dementia.
Once your person has lost capacity permanently, they can no longer fill out a medical POA form.
Legally, you can not fill out this form, or any other advance directive form, on behalf of someone.
This is why filling out a medical POA form is a time sensitive issue for a person living with dementia.
What happens if a person living with dementia can not fill out a medical POA form anymore?
I’ve written an entire blog post dedicated to what happens when someone has not documented any of their wishes, including who they want to be their medical decision maker.
A person who has not filled out a medical POA form and loses capacity will leave their medical care decisions to be determined by someone who has a legal right to do so.
Most commonly this is a spouse/partner or an adult child. The rules for who has a right, and in what hierarchy, can vary by state.
Another option is someone can obtain guardianship or conservatorship over the person.
This involves a legal process and will declare the person as “incompetent”.
The guardian or conservator will then legally have the right to make the person’s medical, and in some cases financial decisions.
Going through this legal process can become necessary if the person living with dementia is becoming unsafe physically or financially due to their inability to make competent decisions.
It also happens when family members do not agree with the rationale of the person’s designated medical decision maker or can not get on the same page as a family regarding the person’s medical care decisions.
I want to stress to you that just because someone did not choose a medical decision maker, it does not mean no one will be called upon by the medical team.
We will still look for someone to help us make decisions.
When does a medical POA form go into effect?
This isn’t a trick question; it is when the person is incapacitated.
In the US, states designate a process required to determine when a person has lost decision making ability and is incapacitated. You can look up the details for your state.
Practically speaking, it is often very obvious to the medical team that the person can not choose for themselves.
These situations are more black and white. We realize right away we need help and that the person can not do this for themselves.
In these cases when a decision is needed, the team should look for the person’s medical POA form, or the name of the person on file in the medical record, and contact the medical decision maker.
What happens when it is clear to you, but not to medical staff that a person has lost decision making capacity?
These situations can be harder to navigate for both you and the care team.
It might be clear to you, the person who knows them best, that they no longer can make their own decisions.
Keep in mind we have a duty to our patients to respect their privacy and autonomy.
You might find it frustrating when we are asking your person the questions we need answers to when you know full well they can not meaningfully answer.
Step into our shoes for a moment.
Every adult has the right to make their own healthcare decisions and to keep their information private from children, spouses, etc.
People living with dementia also have this right.
The medical staff may not know you. Their duty is to your family member, the patient first.
When your person has lost decision making capacity and it is not obvious to the medical care team, clear communication with them is needed.
Be assertive, but kind. You will have to repeat yourself.
Make it clear to staff you are there to support the person and have their best interest in mind.
Communicate that although it may appear the person can make their own decisions, they are not truly able to.
Give examples why this is the case.
Tell them what support your person needs on a day to day basis.
For example, maybe your person can no longer be left alone due to safety concerns.
Perhaps they do not have the ability to manage their finances or to make sure they are getting enough to eat and drink.
Often if a person is requiring this type of support, they will not be able to analyze the care options available to them or weigh the risks and benefits in order to make their own healthcare decisions.
You might explain that your person can have seemingly normal conversations, social interactions, and maybe even be able to communicate how they are feeling, but in a few hours or days they will have no recollection.
Tell the team the reasons why your person no longer is able to make decisions which could affect their health or life going forward.
Be straightforward.
Use our language.
If it is true, tell them your person has “lost decision making capacity.”
If it would be easier for you not to have to say this in front of your person, type this up in a document and hand it to the staff. Bring a few copies with you to give to the different people entering your person’s room.
If you have a note from your person’s doctor stating they no longer have capacity bring this along with you. See if you can get it on record in your person’s medical record.
As an aside, make sure your person’s dementia diagnosis is listed in their chart and that the team taking care of them is aware of this.
A diagnosis of dementia does not mean a person is no longer capable of making their own decisions.
However, seeing dementia listed as a diagnosis in a person’s chart can be a tip off to staff that family may be helping the person to make decisions or has taken over the role all together.
To improve this communication with the medical care team, check out tip # 6 in this post.
Who can be named on the form as someone’s medical decision maker?
In the US, any adult 18 or older can be named as someone’s medical decision maker (MDM).
The MDM does not have to be someone blood related to the person, but it should not be a professional involved in their care who would have a conflict of interest when assessing the person’s treatment choices.
What do medical POA forms give the medical decision maker the power to do?
Make all healthcare related decisions on behalf of the person, including:
- What doctor the person goes to see.
- Whether or not to have testing to diagnose or help with treatment of a medical problem.
- Choosing which tests are OK are not OK.
- What medications the person will continue or start taking.
- Determining overall goals of care.
- Deciding if there will be a focus towards quality of life or length of life
- When to start or stop care that prolongs the person’s life.
- Signing medical order forms such as the Do-Not-Resuscitate (DNR) or the Physician’s Orders for Life Sustaining Treatment (POLST).
- Whether or not the person should have surgery.
- Starting palliative care or hospice.
Any care decision you would make for yourself you will make for your person as their medical decision maker.
As an ER physician, what are the issues I have seen with medical POA forms?
One of the most common is when the person named as medical decision maker (MDM) is unable to do this job.
Often it is a spouse who is sick or aging themselves.
Perhaps they also have a disease causing dementia.
Even more commonly, they are emotionally unable to make difficult decisions for their spouse or parent.
When I ask, “What would your wife say if she could see the way she has been living before this happened?”
They often say, “Oh, she wouldn’t want to be living like she has.”
Then when we start talking about the next steps in her care, were she to get worse, I hear, “Please keep her alive and do everything you can. I’m not ready to let her go.”
I can not pretend that I understand how the person feels in this situation.
I have not been married for 50+ years.
But, there is a clear misconnection here.
If someone would not want to continue living the way they have been prior to a new medical condition or illness, we should think twice before continuing to choose care that has the primary goal to keep them alive.
That does not mean they can not receive care or would be left to suffer.
I find many medical decision makers are not speaking for the person.
It is not about us and what we want, it is about the person.
When we choose a medical decision maker and declare this person on a legal document, we need to make sure the person we choose will speak for us and not for themselves, however difficult that might be.
I believe people often struggle in these situations because we do not make our best decisions in crisis mode.
There is often not enough time to truly teach the decision maker what they need to know about what is most likely to happen to their person with each treatment option.
Often they are so stressed out even when I give them this information they really can not process it well enough to choose.
When I discuss next steps with families they often tell me I am the first doctor who has talked to them about what could happen with certain treatments or a hospital stay.
The healthcare system is failing families in helping them become informed ahead of crises.
How could you not struggle to make tough decisions when stressed, emotional, and having never heard of what you are being asked to choose between before?
Families making decisions together creates another practical issue with medical power of attorney (POA) forms.
Here are two common situations I have seen.
First, someone was named as the medical decision maker, but that person does not feel comfortable deciding until they have had a discussion with the rest of the family.
Second, two people have been named and one can not be gotten a hold of, or they are not agreeing on what should be done.
What happens in these situations is the person living with dementia receives the most conservative care choice until a decision can be made.
The person is often admitted to the hospital to receive further care, care which might prolong their life artificially.
This is not an issue if that is what the person living with dementia would have chosen for themselves, but it is a serious issue if that is not the case.
If decisions are going to be made as a family, the family would benefit from creating a medical decision plan.
I teach the steps to do so inside my free 5-Step audio training and my “Make your Plan with Dr. Lamb” online program.
Naming a decision maker on paper is a thing we should all do, but it is not enough.
If I could erase one sentence from our “societal vocabulary” when talking about preferences for medical care in the future, it would be, “My [children/wife/husband/partner] will know what to do.”
Medical power of attorney (POA) forms are not a plan. They are simply pieces of paper which place an often huge responsibility onto another person.
The biggest mistake I see people make after naming a medical decision maker, is not taking the next step and having a conversation about what is important to them.
People living with dementia often become unable or unwilling to have these types of conversations. If this is the case it is a huge mistake not to think this over yourself or discuss it with other family members.
If you have been named someone’s medical decision maker your duty is to speak on their behalf.
Making decisions for them will be easier for you if you understand their value of quality of life.
Do they value quality of life or length of life more?
You are allowed to think through and determine this on their behalf.
Being able to communicate this value with your person’s medical care team will be extremely helpful.
It is my belief that every person who is unable to speak for themselves should receive medical care they would have chosen for themselves or at least would agree with.
Unless you have a background in healthcare involving medical decision making when someone is sick, you likely will not naturally know what to do.
This will be even more true if the pressed for time healthcare team does not have the time to explain and help you truly understand what is happening.
Do you think you will know what to do if they can not help you think through what is most likely to happen next with certain treatment options, their pros and cons, risks and benefits, and how these decisions may affect your person’s future?
The person living with dementia is relying on you to choose on their behalf.
We know they will lose their ability to make their own decisions at some point.
Knowing this should give you the nudge, better yet, A SHOVE, to have conversations about what matters to them while possible, and to anticipate, learn, and plan ahead on their behalf.
If you want steps to follow to feel more confident and prepared to make decisions on their behalf, download my Free 5-Step audio training.
The process I teach will help you have more peace of mind when choosing because it shows you how to plan for the medical decisions you are likely to have to make before a crisis happens.
Sign up here to have the free training sent to your inbox.
As always, leave me any questions in the comments.
Until next time, all my best to you and your family,
Brittany Lamb, MD
Excellent information.
My husband has dementia; I just retired as a nurse case manager to help him. He just moved to a memory care facility. Thinking back, I wish the facility had reminded me to get all this paperwork in order before he transfers there. I already have everything in order and had it checked by an elder care attorney. However, other families may not be so fortunate. I’ll mention this to the facility so they can remind other families. Thank you for your post.
Maryrose273@gmail.com
Hi Mary Rose, I appreciate you for sharing part of your story here. That is strange and to be honest a bit concerning that a facility would not ask for this type of document on admission. Even if they would not be providing medical care I’d think they would want to know who would be making the person’s medical decisions in case something happened so they could notify them as well as a local point of contact if it’s not the decision maker. I’m glad you thought of it though and you might help someone by talking to them. I think that is wise. Hopefully it was a slip through the cracks situation and not standard.
Thank you, explaining in simple clear terms is valuable.
We have this all set for all 3 living parents. We’ve discussed there intentions (2 have dementia) I appreciate your time and involvement in guiding us caregivers through this chapter of life.
Of course Ann, I’m glad you have this set up for your parents. I am happy to be here and help you all where I can.
In most cases a standard POA goes in effect when the person becomes incapacitated. A Durable POA goes in effect the day it is signed incapacitated or not. For dementia and alzheimers patients this can be very important difference. The fact you leave a doctor to determine incapacitated state or not with a standard POA where as a Durable POA that is authorized either way.
Appreciate your comment Bill. Thanks for taking the time. The term durable is used to ensure that the form is still valid if the person becomes incapacitated. Standard, non durable POA forms (commonly for finance) would be invalid once a person is deemed to be incapacitated. Health care POA forms are usually written as durable for this reason. There would be no point in having one if it was not valid when you became incapacitated. When a healthcare power of attorney form is signed, the person who is named as stand in decision maker does not have decision making authority over the person until they lose capacity to make their own decisions. We make our own healthcare decisions until we lose capacity. The healthcare POA is often involved in helping to make medical decisions with the person living with dementia until situations where they have to take over and then when the person is no longer competent and medical decisions will be left to the healthcare POA permanently.