10 Mistakes to Avoid as Medical Power of Attorney – Part 2

OK, let’s jump back in this week where we left off with Mistake #6. If you are looking for the first post with mistakes 1-5, you can find it here.

6 - Not Using Medical Order Forms When They Go Along with Goals of Care

When your person can no longer speak for themselves, this also means they can no longer create their own advance directives.

You are also limited in what you can do to advocate for them from a directive standpoint.

However, there are two types of forms you can use as someone’s medical decision maker on their behalf.

These are portable medical order forms. They are not technically advance directives, but documents to be used to express someone’s wishes or preferences towards their health care.

Order forms means they are filled out with the patient, or you – their medical decision maker, AND a qualified healthcare professional, commonly a physician, NP, or PA.

The first is the Do-Not-Resuscitate (DNR) order.

I discuss the DNR, what it is and what it is not, here.

Briefly, it only goes into effect when someone is dying or has died.

Most DNR orders are written in such a way that they apply to two main treatments.

One is cardiopulmonary resuscitations (CPR).

We start CPR when someone does not have a pulse (heartbeat) we can feel in their neck or groin. Cardiac arrest is a term that is used to describe when someone has died or is dying and has no pulse.

The second treatment is intubation and is commonly a component of CPR.

I talk about CPR and intubation in more detail here.

Briefly intubation is the ability to completely control someone’s breathing, air going in and carbon dioxide going out. A tube is inserted into the airway (trachea) to do this. If the person gets their pulse back, we hook them up to a machine called the ventilator which controls all components of breathing.

Occasionally the wording of a DNR can include language so that other means of resuscitation, especially in supporting someone’s breathing, is not started.

What remains the same is that the DNR only applies when someone is dying or has died.

Who should consider having a DNR?

If someone would not want their life prolonged if they were to lose their pulse and be dying, they should have a DNR.

People’s whose goal is to be kept comfortable, avoid the hospital, and medical treatments that will prolong their life should have a DNR.

People who have a DNR will be allowed to have a natural death.

What is the other medical order form a caregiver can fill out for their person?

It is the POLST form. It is also a portable medical order and can be very helpful for people with dementia especially in the later stages.

These order forms are an expansion of the DNR.

If someone has a DNR, you should also consider having this form in addition. It allows documentation of their preferences regarding other treatments we use when someone is critically ill. Treatments that have the intention of prolonging life.

Be aware, POLST forms are called by different names in some states. It is now referred to as POLST without an acronym but you may have referred to these forms as POLST or Physician Orders for Life Sustaining Treatment in the past.

Maryland uses MOLST.

You should also know that POLST is not widely adopted in every state.

Florida for example, has people working on making it a “legal” document there. This has been an ongoing project for at least the past ten years.

I worked on this while I was in medical school.

If you want to read the article I co-authored with a law student at the time you can find it here.

All these caveats aside, I recommend you look up the POLST project for your state.

If your person has a DNR or you think they would want to have a DNR, you should consider reviewing and filling out the POLST form with your person’s medical professional.

Looking at the POLST form will help you be aware of additional treatment options that you need to consider as your person with dementia’s quality of life worsens.

If you do not have POLST or a version of it, look at the treatments covered on another state’s form and start thinking about whether or not your person would want those things.

If you’re searching to read another state’s form, I very much like the MOLST form, specifically Maryland’s version of this form.

The MOLST form includes someone’s DNR status and other medical treatments that they could receive.

It also allows someone to designate whether their person would or would not want to be intubated outside of cardiac arrest.

Remember cardiac arrest means the person is dying or will die and is when we start CPR.

The MOLST form allows designation of whether someone would want blood products to be transfused, IV antibiotics, fluids, transfer to the hospital, and medical testing to be done, amongst other things.

If you are not able to use a version of the POLST form for your person where you live, you still need to make a plan about these treatment options. It will be in your benefit to decide when your person would want these things and when they would not.

If you are called to make the decision you will be able to answer more confidently by planning ahead.

Other things you should know about the DNR and POLST forms.

Both the DNR and POLST are transferable, also known as portable, and are to be followed across health care settings.

This means if your person has these forms and they live at home, the paramedics who come to your house will need to see the forms so they can follow them.

The form will be brought by the paramedics with your person to the hospital so it can be followed by hospital staff.

If your person moves into a living facility or needs a rehabilitation stay after the hospital, the form will again go with them and will be followed there as well.

Keeping the physical forms organized and easy to access is key.

I want caregivers to know the DNR and POLST forms exist.

If your person did not fill them out prior to losing their ability to make their own medical decisions, you can do so on their behalf.

They are helpful in that they can be used to start a conversation about treatments the person may or may not want if they became critically ill.

You will very likely have to make these choices at some point, thinking about them ahead of time is never a bad thing.

Both forms offer great ways to consider critical care treatments and start the conversation of what you would choose to do if they were being recommended. A lot of treatments we use for those who are critically ill have the primary intention of prolonging someone’s life.

The DNR and POLST forms allow someone who doesn’t want to continue medical treatments to have those wishes followed.

The national POLST form also allows someone to designate they DO want CPR and all other treatment interventions.

Making the decision of when to use these forms and how to fill them out will come back to how much the person with dementia values quality of life over quantity of life.

To summarize, when someone does not want their life prolonged and would want a natural death, having a DNR form is appropriate. At that time, it is also good to consider at least reading the POLST form.

7- Having an “Advance Directives are Enough” Mentality

Thinking you can rely on advance directives to make decisions in the moment is the most common mistake I see.

I talk about this all the time because I see it all the time.

Advance directives are not enough. The reason why is simple.

They do not include every decision that needs to be made when it comes to treatments.

They are tools to be used, but you can not rely on them to make medical decisions.

The two most common documents I see in the ER are the DNR and the Living Will.

I have written about these forms in great detail in two previous blog posts that you can find here. Part 1 & Part 2.

DNRs, Living Wills and other advance health care directives do not cover every treatment option.

Even the POLST form leaves out common critical care treatments.

I often find myself starting critical care treatments and interventions on patients with advanced dementia because their decision maker thought they could use their advance directives in the moment to make care decisions.

Because of the stress of the situation the decision maker is less capable of making a choice quickly.

The result when there is indecision is to do more.

Inside, I am wondering to myself, if the person was able to speak for themselves would they choose this path? Would they want to be kept alive at this point?

Would they want us to keep them alive to try and see if they get back their current quality of life?

Would they say, “no thanks,” my quality of life is already worse than I find acceptable and I do not want any treatment that will artificially prolong my life even for a short period of time.

Having advance directives does not mean medical decision makers are off the hook when it comes to planning.

There is no substitute for planning.

I have an approach to planning that I lay out in 5 Steps in a free audio training.

Here’s the link to have it delivered to your email.

Step #2 covers advance directives.

Step #3 discusses the next mistake I want you to avoid.

8- Forgetting to Set Goals of Care

Goals of care is a topic that gets left to the last minute. It should not.

We all have goals when we consume healthcare. Typically we don’t have to state them out loud because they are implied.

We want to be out of pain, regain our normal functioning, and live.

We want to live the same way we were living before we had the medical issue.

Like I’ve discussed, I view living as separate from being alive.

“Living,” to me, is what makes us feel alive and have purpose, meaning, gratitude for waking up. It is what makes us who we are, what lights us up and makes us happy.

Being alive is having a pulse and being on this side of the dirt.

We can keep you alive with modern medicine in many cases.

As we age, and our quality of life isn’t the same as it used to be, or if we develop a condition that threatens quality of life, like a disease causing dementia, many choose not to continue to pursue being alive at the cost of their quality of life.

Your goals of care should reflect your opinion about how much you value quality of life. The same goes for your person living with dementia.

Your person may not be able to have this discussion with you anymore, but you do them a disservice if you do not do this work and ignore this process.

Goals of care comes down to three groups.

Full treatment, some but not all, and comfort care.

This is what I teach.

Full treatment is what it says.

The person wants everything done to keep them alive.

Being alive is the goal.

The person values being alive and is willing to sacrifice their quality of life to be alive.

This is my current goal of care.

Some, but not all is where many people with dementia will fall once they lose their ability to make their own care decisions.

These people want to preserve their quality of life and value this more than quantity of life.

Their decisions makers should consider having a DNR order form put in place depending on their current quality of life.

They may be willing to sacrifice quality of life for a time, for example being hospitalized, and even having life prolonging critical care. However, if it becomes clear that their life will not be the same, and they will have a worse quality of life, they may want aggressive care backed off.

They may even switch to comfort care at that point.

People in the comfort care group do not want any interventions done that serve to prolong life.

If they become critically ill they would prefer to be kept comfortable and allowed to pass away naturally.

They do not want CPR or intubation and do not want ICU level care.

That does not mean they can not be hospitalized, although they likely will prefer not to be taken to the hospital unless they are suffering and can not be kept comfortable where they are currently living.

These are the three main groups and the way I teach caregivers to choose a goal of care for their person with dementia.

You can read more about the value of having clear goals of care here.

They are fluid and definitely not set in stone, but separating them in three groups gives you a foundational approach to view how they apply to your person.

To have an understanding of your person’s goals of care you’ll need to think about their quality of life.

9- Ignoring Quality of Life

Talking about Quality of Life (QOL) should be easier to accomplish. It doesn’t have anything to do with medicine or someone’s medical care preferences.

Quality of life refers to how someone wants to live while they are alive.

It’s about our day to day life and activities. What we find meaning, purpose, or more simply, peace or enjoyment from.

Some may value traveling, walking, hiking, getting outside, enjoying conversations with family, a good meal, a book or movie.

Some may have had some of this ability slip away and value instead not being in pain, being able to get out of bed, to voice their care needs, be able to ask for help, to enjoy eating and the company of others.

Fundamentally, it refers to our values of what a good life is. It is a subjective definition for each of us. Many of us do have some of these things in common.

Naturally as we age and life goes on, what quality of life means to us changes.

As a medical decision maker for someone with dementia you need to understand what QOL means to your person.

Quality of life and goals of care go hand in hand. The more someone values their quality of life over the length of their life means as their quality of life decreases, so should the use of treatments that serve primarily to prolong their life.

First start by defining what makes your person have quality of life.

Make a list. Write your thoughts down.

Brainstorm all the things you think matter to them.

What makes them happy?

Ask people they are close to. They can give you ideas about what makes your person who they are, what they enjoy.

You can also ask people close to them about conversations they have had in the past.

Consider asking or trying to recall what your person said when a friend or family member developed a condition that caused them to require healthcare or caused suffering.

Sometimes seeing someone else go through a healthcare battle, especially if they lost it, helps us learn what living means to us.

Take the time to do this work.

Talk to your person about it if they are able to.

Most of us would rather talk about what makes us have a good day than what health care treatments we would or would not want.

Do not make this mistake and skip thinking about and attempting to define what quality of life means to your person.

When you understand what living means to someone you will be better able to make medical decisions for them.

10 - The Mindset of, “I’m Not Ready to Let Them Go.”

When medical decision makers say this to me in the ER I have to be honest, it irks me.

To be clear, I’m not talking about when someone is unexpectedly dying after a car accident, a huge bleeding type stroke, or something sudden where no one saw it coming.

It bothers me when people making decisions for their family member say this knowing they are making a choice to prolong their person’s life solely because they are not ready to see them leave this world.

“I’m not ready to let them go,” when said about someone with a chronic incurable disease, makes me wonder if the decision maker has considered whether their person has truly been “living.”

They are alive, but does that mean they have quality of life?

The caregiver themselves will often tell me point blank they know their person wouldn’t want to live the way they have been.

The way I view my role in this moment is to try and understand what is causing the caregiver to feel this way.

I want to help them understand their duty as medical decision maker or medical Power of Attorney is to make the choice their person would choose if they were able to speak for themselves.

I ask what their person would say if they were able to see the way they are living these days.

Would they be OK living the way things have been going?

What would they say if they could see themselves now?

Would they want to have their life prolonged considering what has been and is currently happening?

Often they tell me their person would not want to live the way they have been, but they themselves are not ready to see them go.

They often tell me they feel guilty. They feel if they let them go, it’s like giving up on them.

Sometimes they feel pressure from other family members to continue care. Family members who aren’t around day-to-day might not truly understand how the person’s life has been impacted by the dementia symptoms.

They may have unrealistic expectations and push for care that will continue the person’s life. The caregiver may be worried about the repercussions in their relationships with family if they choose not to continue care.

I have also found many caregivers have a hard time seeing themselves outside of the caregiving role. Their person’s daily life has become their routine.

Without the person with dementia they tell me they don’t know what they will do with themselves. Many have suffered losses of friends, family, and other relationships on the caregiving journey.

The person living with dementia can easily become the caregiver’s main purpose in life.

I know what it’s like to lose someone slowly to a disease that can not be cured and will only progress over time.

Every day you feel grateful to be able to spend a little bit more time with them. The possibility of another conversation had, another memory made, keeps you going in the face of a known heavy loss looming ever closer.

I can see why the loss of the person with dementia could feel like a loss of yourself and who you are. Especially if you are the person providing the daily care to them.

Here is another reason why being a medical decision maker is such a hard job; if they would not want to live this way, you can not let your own motivation, or anyone else’s, cloud your judgment in making choices they would make for themselves.

It’s not about you.

I want you to remember you have a duty as a medical POA.

In being the voice for someone else you have to remember, it’s not about you.

It’s about them.

If they would say they are ready to go, please let them.

Thank you for reading!

The fact that you are here means you care and are motivated to provide the best advocacy and support for your person.

I want you to have a plan for how you will make medical decisions for your person so you can avoid all the mistakes I see so often and have written about in these two posts.

You can get started by listening to my Free Audio Training. Scroll down on this page for the link.

Join my Facebook community and follow me on Instagram for more tips.

If you are ready to make a medical decision plan for your person I encourage you to sign up for my online program Make Your Plan with Dr. Lamb. You can read all about it and see the cost and time commitment here.

Until next time, all my best to you,

Brittany Lamb, MD