Before we get started with the 5 Steps, I want to share a strong value I hold as a physician, but also as a human being.
I believe when someone is sick, they should be given the information they need in order to understand the treatment options available to them.
With this information they can weigh out the risks and benefits, pros and cons and choose what option is best for them at that time.
When we are given the information and knowledge we need, this strategy can be effective throughout most of our lives.
However, it assumes one key piece of information; that the person is capable of making their own decisions.
Many of us forget or fail to consider there is always the possibility of losing our ability to make decisions when we become sick.
We are all at risk of this.
Every one of us could feel so badly, be in so much pain, or become overwhelmed by a medical situation.
Even if we still have decision making ability, the way we feel may cause us to have a lack of confidence in the choices we make.
When someone is diagnosed with dementia, losing decision making ability is no longer a looming threat, but an expected reality.
The person will not have the ability to choose for themselves at some point.
Because of this certainty, you have an opportunity.
You do not have to be caught off guard by a medical problem your person is likely to have.
As their decision maker you can avoid the overwhelm and indecision I see on the faces of caregivers almost every shift I work in the ER.
You are here reading, learning.
To me this means you are a planner.
It tells me you are ready to uncover and fill in the gaps in your knowledge.
Let me get you started with the 5 Steps necessary towards being a confident medical decision maker for your person.
This framework gives you a path to follow.
Going through these steps, you can start the process of creating a medical care plan specific to your person.
This is how you develop confidence in making decisions on someone’s behalf.
I cover these 5 steps in my free audio training.
For more detail, and to hear me teach these concepts, click here to have the training delivered to your email.
Step 1 - Take a look inward. Examine your mindset.
The way you see yourself in this role is important.
Speaking for someone else when they can no longer is a big responsibility.
You will likely second guess yourself at some point. That is normal.
You might even make what you later deem to be mistakes.
It is OK as long as your intention behind the actions you take is to always speak on your person’s behalf.
We want to make choices for them, and avoid doing things to them.
Say what they would say and choose what they would choose, if their brain was healthy.
Remember they would be capable of learning as you are through this process. What choice would they make if they knew what you knew and were able to apply that information to their current situation?
This is the mindset you need every time you make a decision.
Be thirsty for knowledge, open to learning all you can.
Be willing to ask for help.
You are capable. I can help you discover what you do not know about the medical side of things.
You do not need a medical degree to create a medical care plan for your person.
You can do this planning once and refer back to it updating it as needed as things change for your person.
Step 2 - Gather the documents. Create or update them if that is an option.
Find what information you might have already available to guide you.
Look for a Living Will or an advance healthcare directive.
Search for any portable medical orders like a DNR or a POLST form (or your state’s equivalent form).
You can read more about POLST form here and look up if your state has a program here.
Once you find these documents, read them.
If there is language which is unclear to you, come and ask about it in the Facebook community I moderate.
What are the documents telling you?
Are there any specific medical treatments your person does not want?
Do the documents clearly say when they would or would not want treatment?
Please be aware, the legal tools we have to direct our care in advance do not cover everything.
I find they often leave caregivers with a false sense of reassurance believing they will tell the medical team what to do.
Since working exclusively in the ER since 2014, I have never had a case where a person’s advance directive told me how to care for them unless they were actively dying.
They do not cover every treatment and don’t tell us specifically what to do.
They do not speak to all of the conditions a person is at risk for or address how a treatment might be ok with someone in one medical situation, but not in another.
I do find them helpful on occasion to give me more insight and understanding of a person’s values when it comes to their quality of life.
The holes or gaps in planning that advance directives leave is why I am here doing this work.
It is why having a medical decision plan specific for your person is essential.
Allow me to sidetrack for a moment.
I’ve used this term a few times and should define it before we move on.
When I say medical decision plan, what do I mean?
You can have a plan of action to follow for every major medical condition your person is at risk for.
This plan is going to account for their current and future goals of care (We will discuss goals of care in the next step).
The process of planning helps you identify the medical issues common in dementia, aging in general, and those related to your person’s current and past medical history.
After identifying the conditions your person is at risk for, you then make a choice of treatment for each condition.
You decide what they would be ok with right now and what they would want in the future as their goals of care change.
There is fundamental knowledge you need to be truly informed about these medical conditions and their treatments.
Online courses allow professionals like me to teach you this information in an easy to digest way you can consume on your own time.
I will teach you what these conditions look like from a symptom standpoint, how we diagnose them, and what the treatment options are.
As I said at the beginning of this post, people deserve, and should have the information they need, to choose the best treatment decision for themselves.
You should have what you need to make the choice that is best for your person.
We do not have the time in doctor’s offices, in the ER, or the hospital to teach you these concepts in detail.
You can not rewind what we said. Sometimes you need to hear something more than once to truly understand it.
By creating a medical decision plan for your person, you will be set up to engage with their medical care team knowing you are choosing the care they would want and what is best for them in that moment.
Ok let’s get back on track.
I want you to locate and read your person’s documents.
Read them so you can find the gaps in planning.
Make a list of questions you have after reading them.
Come ask your questions in the Facebook community.
If your person has the ability to make their own decisions, there are a few time sensitive things you will want to take action on as part of this step.
If this is your situation, please keep reading. If not, you can skip to Step #3.
Do ask about and look for previously completed advance directives but be aware at this point your person can update or create their own advance directives.
The clock is ticking on this ability.
You will want to make sure they declare someone as their medical decision maker formally. Follow the requirements for your state.
Having a durable medical power of attorney (POA) form is a very common way to designate a medical decision maker.
It is wise to consider consulting with an estate or elder law attorney to update or create advance health care directives and know you have followed the legal requirements in your state.
Their services do much more and are invaluable when it comes to creating estate and financial plans.
Please know it is possible to complete advance directives and designated medical decision maker forms like a durable medical POA on your own using websites like legal zoom.
Pay attention to and follow your state’s rules to make the documents legal. Some require witnesses or notarization.
If your person wants to make custom statements about their treatment preferences on advance directive forms (many states have space on forms for this), this also needs to be done while your person has the ability to make their own decisions.
In creating a medical decision plan together, you may find something they feel strongly about documenting in their legal advance directive. Pursue this option if it is available in your state.
Remember, you can not create advance directives for someone.
For a person to direct their healthcare in advance or choose a person to make their medical decisions by way of the documents legal in their state, they must do this while they still have the ability to make their own decisions.
While your person is able, I recommend following the next steps alongside them.
The goal is to encourage them to weigh in and make their values and preferences known because we do not know when they will lose this ability.
Include them where they are willing and able. Do not overwhelm them.
If they do not want to do this work, please do not give up on following this path yourself.
You will ultimately be the one left to decide for them. If they will not participate, commit to doing the work on their behalf.
Go through the process laid out for you while you can still ask them questions.
One day they may see things differently and be more open to discussions with you.
Step 3 - Determine goals of care now and when they might change.
I can not stress enough how important this is.
Goals of care have to be defined.
Choose your person’s goal with them or on their behalf.
Every medical decision you make, even some non-medical decisions, will require you to consider your person’s big picture goal.
Their overarching goal guides your choice.
I have written a couple of posts on goals of care.
For more on how to start the conversation about this topic, click here.
To read more about why you must be able to communicate your person’s goals with their medical care team, click here.
I feel like a broken record on this topic.
To be honest, it is a bit selfish in a way.
Every healthcare professional including physicians, PAs (physician assistants), and NPs (nurse practitioners) will be able to provide better medical care to people living with dementia when goals of care are decided ahead of time.
Goals of care are not set in stone. They can change and often do over time.
There are three goals of care categories.
1 – Full treatment
Maximum medical treatment until it fails.
This category includes having CPR and being put on a ventilator.
I fall in this category. Many of us do.
Your person can have this goal of care even if they value the quality of their life over the length of their life.
If this is your person, when their quality of life declines to a certain point, they will no longer want to be full treatment and you will need to change their overall goal of care.
Based on what quality of life means to them you can decide ahead of time when they would personally not want all medical treatments and would want a change in their goal of care.
2 – Some, but not all
This a very common goal of care category for people living with dementia.
People in this group value quality of life over length of life.
They are often OK with treatments that serve mainly to prolong their life, but not all, and not indefinitely.
They often want the chance of receiving critical care to see if they will recover or perhaps maintain their current quality of life.
Many people naturally move into this group when the decision is made that they would not want to have CPR.
Remember CPR (cardiopulmonary resuscitation) and the DNR (Do-Not-Resuscitate) order form only apply when someone is dying or has died. The person has no pulse and is not breathing.
For more practical information about CPR and DNR, click here.
People in this goal of care category who do not want CPR and have a DNR form can still have every other medical treatment, including medications, procedures, surgeries, and critical care interventions.
It is essential that people who have this goal of care create a medical decision plan specific to them.
Like we discussed in Step #2 their medical decision plan will define which treatments they do and do not want and under which circumstances.
3 – Comfort
This category is often misunderstood.
Comfort, as an overall goal, does not mean the person will not receive care.
When someone has this care goal every treatment, procedure, surgery, or medication they receive needs to have the underlying intention to provide comfort.
Yes, people who want their care to be focused on comfort can still have procedures and surgery. For example, repair of hip fractures is often performed because they help control pain.
It is true that many people with this goal are more towards the end of life. It is also true that this should be the goal of care for people receiving hospice care.
However, many people who are in this group have an acceptable, or even a good quality of life.
There are people who are diagnosed with dementia who verbalize to their friends and family their wish to not receive any treatments which would serve mainly to keep them alive and prolong their life.
Many of those people would fall into this group.
Every person has a preference when it comes to their value of quality of life vs length of life.
Determining where your person falls on this spectrum will help you determine goals of care.
Remember their goal of care is not set in stone. It is likely to change over time.
Start thinking about what category your person is in now.
Don’t get stuck on this step. Read my past blog posts on this topic.
If you want to ask me questions about this, check and see if I have an upcoming Q&A session you can join, click here.
You can also join my email list, hit reply and ask me questions anytime. Sign up here.
Step 4 - Be proactive, take action. Gather your person’s complete medical history. Document it for yourself all in one place.
You’ll need to make a list of your person’s
- Medications
- Allergies
- Past surgeries
- Hospital stays
- Medical conditions now
- Past medical problems which were cured or are in remission
Do not skip this step.
You can find this information in the notes from past hospital stays and doctor’s visits.
Electronic medical records are standard these days. There are rules which say people have a right to access their medical records.
Physicians’ and other medical professionals’ notes are visible to patients through their online portals.
Knowing your person’s complete medical history will naturally help you better communicate with your person’s care team.
You will understand more quickly why the medical team is making certain recommendations. You’ll feel more confident when asking questions.
Conversations will be more efficient because we’ll be coming to the “table” with similar information.
I want to clarify, no one is a list of diseases.
We each have our stories and the things that make us “us.”
These unique factors are what we notice and pay attention to when we are caring for a person we love.
Naturally we don’t always take into consideration the person’s overall health or medical risks.
However, when you sit down to actively compile and create a list of the conditions your person has faced, or is currently being treated for, it can be eye opening.
Our bodies are aging. We all know this. We feel the wear and tear of time. Your person living with dementia is no different.
Modern medicine has ways to preserve and protect the way we currently live, but it can not reverse what has happened in many cases.
Our medical history points to what we are most at risk for in the future.
Physicians, especially those in the ER and the hospital, are there to evaluate risk.
We are able to look back at what has happened to someone in the past, analyze what is happening now, and forecast out what they are at risk for.
We think “worst first.” That is how we save people’s lives.
In the ER and hospital, we consider the life-threatening conditions which could be causing their symptoms and then run the appropriate tests to help us diagnose and care for them.
The ability to assess each person’s risk is why every person can have their own medical decision plan for the future.
You can learn the medical issues your person is most at risk for and then make a plan for the decisions you will make for each condition depending on their goal of care now and into the future. This is medical decision planning.
Their past and current medical history is key to this knowledge. Without it you can not create a medical decision plan.
You could easily miss something your person is clearly at risk for and not plan for it if you skip over this step.
Once you have a list made you have a bit more work to do.
You can do Step #5 on your own or you can reach out for help.
Step # 5 - Learn what you don't know to create your medical decision plan.
I have noticed a theme amongst caregivers who I meet in and outside of the ER.
So many feel a sense of having lost control.
When faced with caregiving for someone living with dementia you do lose the ability to control a lot of what happens on a day to day.
One thing you absolutely have control over is your ability to be proactive, to invest time to learn, and fill the gaps in your knowledge.
Since you are here reading, I assume you are motivated to do just that.
In doing so you are giving yourself a huge advantage. There is a lot to learn as a caregiver and planning for medical decision making is something you do have control over.
You will be able to apply this knowledge to your own life or when you are advocating for someone else you love.
Here are some tips to focus your learning so you can get started in creating a medical decision plan for your person.
Keep in mind, you do not need to do this in one sitting. Chip away at it little by little.
First, take the medical history list you gathered and read about the conditions your person has now.
What does it look like when these conditions get worse?
What are some of the symptoms?
Do these conditions cause people to need to be hospitalized if they worsen? Do they cause people to be very sick? We call this being critically ill.
Next, what is your person at risk for based on their age and past medical history?
To be honest, this may be challenging to do completely on your own.
You can ask your person’s primary care physician or general medical provider. Ideally this would be the person who oversees their care from a big picture standpoint.
You can also come to me. I have built a course to teach these concepts to you on your own time, online. All you need is a connection to the internet.
Finally, you need to learn not just what your person is at risk for, but how these conditions are treated.
Do the conditions cause someone to be seriously ill or have a need for critical care? What does that treatment look like on a logistical level?
Do these treatment options prolong someone’s life?
Treatment in the hospital is important to focus on because this is where critical care happens. It is where we can use treatments to keep someone alive and prolong their life. Naturally this is where a lot of major medical decisions are made.
If you want to save time with access to all of this information in one place and have a foundation of knowledge to use when discussing your person as an individual with their health care team, I have an online course that can help you accomplish this.
The course explains the most common medical complications of dementia, aging, and very common chronic diseases.
You will learn what the treatments are with a focus on providing you with an understanding of critical care and what this looks like on a practical level.
The course is a start to finish in how to create a medical decision plan specific to your person.
I will personally get involved and give you insights into your person’s medical history after you share the document I teach you to create with me as part of the process.
To read more and to enroll click here.
Alright, there you have it. You now have a path to follow.
Chip away at these 5 Step over time.
Let’s get you on your way to becoming a confident medical decision maker.
Involve your person when you can.
If you are feeling stuck, reach out for help!
Until next time, all my best to you and your person,
Brittany Lamb, MD