I can not stress enough how difficult it can be to make life and death choices for another person, especially someone you love.
This is an incredibly important job.
We know that people living with dementia are living with a progressive disease in their brain which at some point will make it so they are unable to make their own decisions.
Making medical decisions is not easy on our brains. You will be needed to step in and do this for them at a certain point.
It is a when, not if situation.
It is my mission to teach dementia family caregivers who are the medical decision maker(s) for their person to choose with confidence.
Read on to learn the most common mistakes I see people in this role making so you can avoid them.
This week I cover 1-5. In next post (click here) I cover 6-10.
Before we get started, be aware there are many names for “medical decision maker.” Medical power of attorney is very common, but so is healthcare power of attorney, health care surrogate, and healthcare proxy.
In my articles I will either say “medical decision maker” or medical power of attorney, just know I’m talking about the person, or people, who are making another person’s medical decisions.
Ok, let’s dive into the first 5 mistakes I want you avoid.
1 - Not understanding your role as POA.
I want to make this as straightforward as possible.
As a medical POA for your person, it is your job to speak on their behalf.
Every time you make a medical decision think about what they would say if they were there next to you with a healthy brain.
Remember your brain is not diseased. You are capable of learning. Your opinions and decisions are allowed to evolve and be adjusted overtime.
If your person had a healthy brain they would, like you, be able to alter their plan. Decisions made previously could change if they were able to learn new things.
I like to stress this point because caregivers often want to fall back on and rely on their person’s advance directives such as a Living Will to make decisions for them.
You can read all about the Living Will and the shortcomings I have seen with this document here.
Advance directives, especially if put in place before a diagnosis of dementia, may no longer reflect someone’s wishes.
You need to read their documents ahead of an emergency.
Use them to help you when you can. However, if they were put in place before a major medical event, they may no longer be relevant and able to guide you.
As someone’s POA you should speak for them as they would with access to the information you now have.
When you make decisions for yourself or someone else, there is typically a balance of weighing out the pros and cons, risks and benefits.
Picture them with their brain not affected by dementia, doing the same.
When you are asked to choose for them, your only job is to say what they would say if they were able to take in all you have learned.
The choice they would come to, should be your choice.
Your role is to speak for them.
If you always keep this in mind when making medical decisions for them, you’ll be on the right track.
2- Not “owning” their medical history.
This is not just an issue with being a caregiver and POA for someone with dementia.
We have a huge problem with this in our society as a whole.
As we age, we “pick up” medical issues. It is a reality for most people.
People don’t live until their 90’s with zero medical problems.
Maybe if they never go to see doctors their issues won’t be found, but they almost certainly will still be there.
It is rare for people to live to an advanced age and have never been admitted to the hospital, have had surgery, or not be on any prescription medications.
Our culture needs to change when it comes to taking ownership of our health conditions.
The first part of the problem is not being able to list your own medical problems.
If you can not state your past and current medical problems, you do yourself a disservice.
You may not believe me, but take this away with you; your ability to rattle off your medical history to me verbally will help me better care for you in the Emergency Department.
Your body is the sole vessel you have for the rest of the time you are on this earth. Care for it as best you can. Know and own the issues it has.
Once you can list your medical history, you can begin to understand what it means for you long term.
You can learn what your medical conditions put you at risk for.
For example, the combination of high blood pressure, high cholesterol, and aging in general, increases someone’s risk of damaged blood vessels.
In turn, this increases their risk for stroke, coronary artery disease (the condition causing “heart attacks”), and kidney disease amongst other things.
Throw in obesity, diabetes, history of smoking, and now their risk for these conditions is higher.
Learning about what you are at risk for doesn’t require a doctor’s education and isn’t a process that has to drag on for a long period of time.
It’s a simple thing really.
Make a list of your major medical problems and the medications you take. Knowing what the purpose of the medications you take is will help you recall your medical problems.
For a start go write down the following:
- Conditions you take medications for
- Conditions you used to take medications for that no longer need to be treated this way
- Any disease being monitored without use of medications (think about the specialists you see)
- Past surgeries
- Past hospitalizations (staying in the hospital overnight)
You should also factor in how regularly you consume alcohol.
Drinking regularly, especially daily, even if you are able to function, and it does not impair your ability to work or do normal daily tasks, is a health risk.
Consider if you are overweight or obese.
Do you, or did you used to, smoke?
Alcohol use, smoking, and obesity play a role in our health.
We often ignore these three because they become normalized and routine to us on a day-to-day basis.
Gathering all this information is important for each of us, especially as we age. It is even more important to do for the person with dementia.
It may require some detective work on your part.
For help, go and find their last hospital discharge summary and look at the conditions listed. Ask their doctor for their latest office note. It will list their medical history.
Get a list of all of their medications. Keep it updated. Store it however is easiest for you to have immediate access to it.
You should keep a physical copy of your person’s medication list in your wallet, in the person with dementia’s wallet, or where their ID is.
Keep a list on your phone as well.
I love a physical medication list handed to me in the ER. It helps me get a rough idea of someone’s medical history quickly.
After you can say your medical problems out loud, you can then learn about what these conditions could mean for your future. You should do the same for your person living with dementia.
Johns Hopkins and Mayo Clinic have well written patient education resources.
You can ask your doctor to help you consider your medical history and personal risk factors to come up with a list of conditions you are at risk for. You can ask your person’s doctor to help you do the same thing.
Modern medicine will continue to improve and evolve over time.
We will be able to improve people’s quality of life in spite of their medical diagnoses.
However, a lot of what we do prolongs life and does not consider the impact it has on a person’s quality of life.
You should have a say in what kind of care you receive, especially if it might alter the way you live every day.
At a certain point you may not want to be kept alive if your quality of life is going to be below a certain level acceptable to you.
Without an understanding of your medical history, you are likely to feel more blindsided and overwhelmed when discussing these matters.
This is why it is key for you to know and “own” your medical history.
Knowing what you, and your person living with dementia, are at risk for medically, will help you foresee the possibilities of care choices you will have to face in the future.
Being aware, open minded, forward thinking, and realistic can help guide conversations and allow you to start planning.
Use your personal risks to consider your future as you age and what kind of medical care you are and are not OK with receiving.
You should do the same for the person with dementia. If they can give you some input about their care preferences, that is great. If they can no longer participate in this type of discussion, it still falls to you to do this work on their behalf.
We as a culture need to stop putting our heads in the sand.
We need to realize that accumulating medical conditions, and aging in general, means we are accumulating risk.
It means a higher risk of further medical issues, need for unplanned emergency care, need for hospitalization, and ultimately risk of death.
Choices will have to be made. The more prepared you are to make these choices, the more likely you are to receive the care you want.
This is what I mean by ownership.
3- Losing sight of the big picture & not tracking the person with dementia's functional status.
Your person living with dementia is likely to have worsening cognitive and functional abilities over time.
That is the expected trajectory of the diseases that cause dementia.
Keeping the big picture in mind is essential if your person has a point where they would no longer want their life prolonged with medical treatment.
If they value quality of life over quantity of life this is important work for you.
Caregivers I work with often seem to not realize how far their person has declined. That is, until I am asking them what their person’s abilities are, and they are for the first time in a while, saying them out loud.
Parents raising kids sometimes lose sight of the big picture too.
When you are with someone every day, you often do not appreciate how far they have come.
As an aunt, when I go to visit my nieces and nephew it is astounding to me how much they have changed. Just over a few months, they are so different.
Their parents certainly realize this, but it isn’t quite as shocking to them because they are with them every day.
It’s a normal part of life.
When we develop a routine and see someone every day, we don’t notice the incremental changes happening.
When you care and are advocating for someone with dementia, be intentional about monitoring and documenting the person’s declines.
Frequently reassessing their brain functioning and physical abilities will better help you see the big picture.
What do I mean by the big picture?
I’m referring to the need to step back and see the situation objectively.
I know, easier said than done.
This is a person you feel strong emotions for.
You likely love them or at least want to support and advocate for them.
There is clarity that comes from knowing how your person is doing from a wider viewpoint.
In order to achieve clarity, you need to force yourself to check in regularly and see how they are doing.
Be mindful of their abilities both physically and from a brain standpoint. Take note of changes. Consider writing them down as you notice decline.
Date the entries you jot down so you can go back and review how fast things have happened.
The big picture is taking a step back and looking at them as a whole.
Are you recognizing that they are stable and the current plan for care is, ok?
When you check in, are you realizing that they are worsening, and it is not safe where they are living?
Maybe there has been a decline and medications need to be reviewed.
Maybe goals of care need adjusting because they have reached a functional standpoint where they would not want care that would prolong their life.
You can think of the big picture as a "check in" to look at their overall quality of life and make sure their goals of care are lining up.
There is some subjectivity and individuality to determining what quality of life means to each of us.
However, someone’s physical and cognitive abilities directly impact their quality of life and can be monitored over time.
You can keep an eye on whether or not they can bathe, dress, or feed themselves.
Can they walk?
Do they need a device like a cane or walker to help them get around?
Are they able to understand that they need a cane or a walker?
Do they realize they have to go to the bathroom? Can they keep themselves clean after toileting?
What kind of cognitive tasks can they perform?
Can they walk around their neighborhood alone and find their way home, make themselves a sandwich, figure out how to use the computer, or turn on the television?
Can they read a book?
How are their language skills?
Can they still hold a conversation with you that makes sense for the most part?
Do they understand one or two step directions?
How about their ability to recognize family?
Do they enjoy the company and interacting with other people?
Keeping track of things like these will help you be more objective about assessing their quality of life.
Perhaps they are someone who would be ok with having help with a lot of their care we all take for granted every day.
Many people would be ok with someone helping them to bathe, get dressed, walk around safely, and make their meals.
There are people who would not want to have their life prolonged living with dementia if someone was having to bathe them, feed them, if they could no longer leave their bed, or they could no longer control their bladder or bowels.
You know them best.
Do not let the day-to-day routine or the monotony of life that happens if we let it, make it so you are not realizing where they stand cognitively and functionally.
Caregivers who see the big picture know with more certainty if their person would be OK with the treatment options being discussed.
They are more confident in making choices because they know based on the way their person is functioning whether or not they would want their life prolonged.
By frequently assessing your person’s quality of life through having a close eye on their functional status, you will more confidently communicate their care preferences and overall goals with the medical team.
This is seeing the big picture.
4 - Not knowing you can say “No” to hospital transfer.
Hospital transfer means traveling by ambulance or a car to the hospital for evaluation.
When you get to the hospital, because the visit and issue is unplanned, you come to the ER to have an evaluation. We help determine care options and what needs to happen next.
Every time you bring someone to the hospital for evaluation you are asking a question of the medical team.
You should ask yourself before you come, “What is the goal of going to the hospital?”
Ask, “Would my person be ok with staying in the hospital?
Or, “Is it our goal to make sure nothing life threatening is happening and then go home?”
If there is something life-threatening happening, or your person is at high risk and staying in the hospital is recommended, would they be OK with that plan?
If they would be willing to stay, what kind of care would they want?
Would they want care that will prolong their life or care that focuses on comfort?
If we find a new medical problem or an issue that requires surgery, would your person want this treated?
As the medical decision maker for someone, you should know the answers to these questions now.
As things change, update your answers.
At a certain point, many people with dementia would choose not to go to the hospital for testing to diagnose a medical issue.
People with severe dementia symptoms and poor quality of life often fall into this group.
They value the quality of their life over the quantity.
They would not want to go to the hospital and get tests done because they would not want treatment.
Their goal of their care is comfort. It would be OK with them to be sent to the hospital only if they were suffering and could not be kept comfortable where they were currently living.
When someone’s quality of life tips to a point where they would no longer want their life prolonged with medical treatment, it makes sense not to send them to the hospital in a lot of cases.
When your person lives at home with you, it will be easier for you to control whether or not they are taken to the hospital.
If you don’t call 911 or drive them into us, they will remain at home.
It becomes more complicated when your person is living in a facility.
You need to understand the policies of the living facility your person is in.
Make sure you know how they handle sending their residents to the hospital.
Will they try to reach you first?
When might they send your person in reflexively without talking to you?
Ask specifically about their policy on falls.
I want to give you an example of why I feel many caregivers are unaware that they can say “No” to hospital transfers.
I see someone with dementia who is being cared for in a facility, after they have had a fall, nearly every shift I work.
Oftentimes the fall was not witnessed, meaning no one saw it happen.
The person is often found lying on the floor somewhere as staff were making their rounds.
I do understand facility staff members’ knee jerk reaction sending people who are on blood thinners as the risk of bleeding is higher. (I do question the use of blood thinners in many of my dementia patients.)
I also have no issue receiving patients when there is an obvious injury such as a cut or clearly broken bone.
Sending them to me makes perfect sense when the person is obviously in tremendous pain as a result of the fall.
What irks me is what I see more commonly.
The paramedics tell me staff says the patient has no complaint and there is no obvious injury.
The patient is acting as they normally do per staff, but they called 911 and, “just want them checked out.”
In theory I understand this. This is typically an elderly person who can not tell us why they fell, may not be able to say they are in pain, and could have a medical reason for why the fall occurred.
Nine times out of ten someone with dementia coming from a living facility can not give me a reliable history.
When they come into the ER, they receive a much bigger work up in general.
After a fall is no different.
As part of the assessment they often receive CT scans, blood work, and other tests to check out their heart in the ER.
I can not tell you the number of times I have looked a patient all over, seen no evidence of injury, and all the testing comes back normal.
There is no clear cause of fall I can find and no injury either.
You’d think it would be easy to just send them back to their facility.
It’s not that simple. I could be ignoring something major.
As an ER doctor, I am an expert at diagnosing life threatening conditions.
ER physicians are trained to “think worst first.”
When someone falls, a key question is asking the patient if they passed out. This is called syncope.
Did passing out cause them to fall?
Because people with dementia can not be relied upon to tell us what happened and how they were feeling prior to the fall, I can not rule out syncope.
What I typically do is call you, the medical decision maker, to go over what has happened. I tell you I can not rule out syncope. If your person has an underlying heart condition this could be more likely.
I have found no reason for the fall. They likely tripped or some other physical reason or balance difficulty caused it.
I see no vital sign changes which cause me concern. No immediate need for anything to be done. They would be admitted to be monitored overnight and likely go home in a day or two.
We would be watching to see if there was an abnormality in the rhythm of their heart that could have caused syncope.
Would the person living with dementia want to be admitted in the case the fall was from syncope?
If we found an abnormality with their heart rhythm it might prompt a medication change. In some cases a pacemaker might be offered. Would they want this?
Being admitted to the hospital does carry risk.
Risk of falling, delirium, infection, medical errors, and more treatments and interventions that could prolong their life.
They will continue to be out of their routine like they have been in the ER for the past several hours.
Most medical decision makers tell me they think it best for their person to go back to their facility.
Some even ask me why they were sent to me in the first place.
Those that are not clear on their person’s goals of care struggle more in making the decision.
A living facility should not dictate when your person goes to the hospital.
Unless the person is suffering, can not be treated where they are, or you can not be reached to help staff make a decision, people with dementia should only be brought into the hospital if that is in line with their goals of care.
Meaning if they were able to have a say, they would choose to have care that prolongs their life.
If your person is living in a facility, set a meeting. Have an overall goal of care discussion with staff. Talk about hospital transfer and specifically what the plan will be if they fall.
Tell them when you would not want your person transferred and when it is ok to do so. It is likely wise to let them use their discretion if you are not able to be reached.
Keep in mind they have policies they have to follow. Facilities are regulated and naturally want to avoid situations in which they could be sued.
You need to know what control you have. Be an advocate for your person in communicating their goals of care.
Consider the POLST form.
The POLST (Physician Orders for Life Sustaining Treatment) form is a medical order form you can look to use if your person does not want to be transferred to the hospital.
Not every state has a POLST program, and they often have slightly different names.
MOLST and POST are other names of these forms.
There is commonly an option to designate and make clear that someone does not want to be transferred to the hospital.
A medical order form means it is to be followed by all medical staff that sees the patient after it is signed, including paramedics and 911 responders.
The form has to be physically present for paramedics to follow it.
You sign this on behalf of your person filling it out with a physician, NP or PA (state rules may vary). Their signature turns it into an order.
If your person lives at home with you and you are sending them to the ER have a clear goal in mind.
Communicate it to us when you arrive or call us.
Let us know the questions you are asking (I know some may be obvious) by sending them in.
Know your person’s goals of care especially if we are recommending they stay in the hospital.
Please know, as long as you are making the decision your person with a healthy brain would make when it comes to being taken to the hospital, no one is going to fault you for not having them seen in the ER or admitted to the hospital.
If someone is at the end of life or with severe advanced dementia symptoms and wouldn’t want to go to the hospital, please ask your person’s care team about hospice.
Palliative care can also help you keep someone home.
That being said, even if they wouldn’t want to come, do not let them suffer at home.
If they are in severe pain, injured and you can not keep them comfortable, please come and see us so we can help.
Coming to the ER doesn’t mean they have to be admitted.
5- Avoiding planning for upcoming medical decisions.
There is a lack of overall planning when it comes to making medical decisions for someone living with dementia.
This is why I chose to get involved and start educating dementia family caregivers.
It honestly hurts my soul when I have a patient come in to see me in the ER from home or a living facility for a medical issue and no one knows what they want to do.
Most commonly I see dementia patients who have fallen or have had a change in mental status. They also come in with other serious medical problems unrelated to their diagnosis of dementia.
The medical issues related to dementia, of getting older in general, and those that are possible for all of us, are foreseeable, if not predictable.
When a patient living with dementia comes in to see me in the ER, I usually recognize pretty quickly they can not make their own decisions and I call upon their medical POA.
I’ll be honest, it bothers me when the POA tells me they have not considered what they would do in this situation.
It’s not their fault entirely.
I feel we have a problem in our culture and society when it comes to thinking about and planning for the realities of aging and being diagnosed with an incurable illness.
The healthcare system is not helping people plan or become prepared well either.
I get it. No one wants to talk about what their care preferences are if something bad happens to them, but this is a huge mistake.
I recognize my own bias because I am impacted almost every day at work by the lack of planning.
However, there is some responsibility people need to take on when they become someone with dementia’s medical decision maker.
I offer good news though.
This work is not as challenging as it may seem.
Once it is set in motion, the plan created can be adjusted as things change.
I believe all caregivers of someone living with dementia should have a plan in place for how they will make medical decisions on behalf of their person.
Gathering medical history is key. Then can come the work of determining goals of care. (You can read about goals of care in my other posts.)
Once you know what your person is at risk for personally, you can also add in learning about the common medical complications of dementia.
You need to learn about how all these medical issues are treated.
What are the care options?
What can be managed at home, or in a living facility, versus what requires hospitalization?
Would your person want critical care?
What is critical care? Do they need a DNR?
This is the work I do for dementia family caregivers who are their person’s medical decision maker.
I deliver a road map of the medical issues you can expect to come up for your person and how they are treated.
I teach the medical complications of dementia, and other common health emergencies related to aging, AND how we treat them inside my online program “Make Your Plan with Dr. Lamb.”
Critical care treatments have to be considered.
Not just CPR and intubation (covered in previous post), but other intensive care type treatments.
I’m talking about things like pressors, dialysis, and critical care procedures such as placement of central lines. How we treat people when their lungs, hearts, kidneys, and other organs fail.
You are capable of learning these things. You can create a plan for how you will act if and when the medical issues your person is most at risk for come up.
You can adjust, most commonly scaling back, treatment as time goes on and your person living with dementia’s symptoms and quality of life changes.
Once you learn about these treatment options you don’t have to do this work again.
You may need to refresh your memory when an emergency comes up, but the time invested initially will pay off in the long run.
You will be less stressed as a day-to-day caregiver because you will know what is expected to happen, what medical issues are common to occur, and what they look like.
Planning for medical decisions will also help you in your own life or if you are asked to advocate for someone else.
You can speak more confidently with the person who will make decisions for you if you are not able to for yourself.
You will be able to tell them what you would want or not want.
I’ve said this before, advance directives do not replace the conversation had between family members or those making decisions for each other.
You could teach a family member or a friend what you have learned.
You can do this work on your own researching online, talking with a family member or a friend who works as an RN, NP, PA, or MD in the ER, hospital or ICU.
You could also make an appointment specifically to discuss this with your person’s doctor. Medicare covers advanced care planning visits.
How I am different from a primary care physician is that every day at work I help people make decisions about medical treatments in life and death situations. I start critical care treatments for patients in the ER and have an intimate understanding of what hospital care looks like.
I find many physicians unwilling or too time-strapped, to have frank heart to heart conversations about disease prognosis and care preferences as someone is declining.
It is unfortunate.
I see this in patients who have advanced cancer as well. However, compared to dementia, many people declining from a terminal cancer can still make their own treatment decisions.
I find it is much easier to have a discussion with the person who is having the serious medical issue, who understands their care options, and can choose for themself.
I understand the emotions that come up when you have to make a choice for someone else.
I do not want dementia caregivers to stress in anticipation about the upcoming medical decisions they will have to make.
Having a plan means you will know what to do as things happen. You will choose more confidently and avoid the hamster wheel of second guessing yourself.
Decision making from a place of being informed means you are more likely to feel you did the very best you could.
By educating yourself you can make the best choice with the options given.
Having a plan means peace of mind.
Spend your time advocating and caring for your person’s day-to-day.
Spend quality time with your person and make memories for yourself having this one big cause of stress lifted off of you.
I believe it is essential for you to become educated and have a plan for how you will act before an emergency comes up.
I can help you do this inside my online program “Make Your Plan with Dr. Lamb.
Until next time, all my best to you,
Brittany Lamb, MD
P.S. Don’t forget to read about mistakes 6-10 you should avoid. Click here to be brought to that article.
I would like an email. Thank you for all you are doing for us caregivers, it is so needed! God bless
You have been added to the list Tammy 🙂 You should get an email every time I post a new article. Happy to be here helping you in any way.
Please add me to your email list.