Speaking on behalf of someone and making their medical decisions is a big responsibility.
As an ER physician, I see most dementia caregivers waiting too long to consider and define goals of care for their person.
Often this topic was never discussed before the person lost their ability to speak for themself.
Caregivers tell me their loved one simply stated, “you’ll know what to do.”
I find many, if not most, people avoid this topic altogether, leaving their adult children or spouse to navigate medical decision making and other care decisions with little to no guidance.
To all my dementia caregivers out there tasked with speaking on your family member’s behalf, please don’t drop the ball on defining and being able to communicate their overall goals of care.
I If I have not convinced you how important this is, read on to hear my thoughts on goals of care, quality of life, and some strategies you can use to honor this part of your role as a caregiver, care partner, or advocate for your person.
Discussing “goals of care” can make family members, nurses, and doctors all cringe a bit, why is that?
Goals of care is a phrase I find myself using often when working in the Emergency Department.
I definitely don’t get the “warm and fuzzies” when I start this type of conversation. To be honest, I don’t like the phrase. There is nothing wrong with the words, or what they mean.
What turns me off is the visceral, sinking versus aching feeling, I get deep down in my gut whenever those words come out of my mouth and I get blank stares back.
I’m often thinking to myself…
How did we get here?
Why am I the one talking to the patient and their family about this issue?
They just met me. The ER isn’t the best place for this.
Why has no one before me talked with them to give warning that the current medical situation was very likely to happen? They could have already thought through and planned out many of the care decisions.
I can not say I love talking goals of care in the ER, but I still start these conversations, and regularly.
It’s a part of my job and one of the most impactful things I can do for patients and their families.
Most of the time it is necessary because my patient is seriously ill or has an underlying disease (like one causing dementia) contributing to their current situation.
This underlying medical issue often can not be cured and is expected to worsen as time goes on.
I start the discussion about the person’s goals because I want to make sure what I am offering for treatment lines up with that person’s values and wishes.
The ER team can help you decide what to do when your person can not say what they want, but it will be easier if you have already discussed their overall goals.
If we can identify that someone would want us to focus care away from a primary goal of prolonging their life and move towards care focusing on preserving what quality of life they have and their comfort, I can make that happen for them in the ER.
It doesn’t mean we are giving up on them. It means we are respecting their wishes and ensuring they will not receive care that goes against what they want.
If a person would want to keep focusing on treatments to prolong life because they would say they have a good quality of life, we can do that too.
When I go into a room to talk to a family about what we are going to do and use those three words, “goals of care”, it is usually because we are faced with multiple treatment options.
Usually there is an underlying serious situation happening and often there is tension in the air.
I am usually a bit uneasy not knowing what is going to come up when we talk.
In my opinion a large part of this is because we have not normalized talking about our inevitable mortality, what quality of life means to us as we age, and how to choose treatment that matches up with our values of quality of life as a society.
Everyone in the room, including me, feels the weight of the choice we must make next.
Family is often a bit frozen and unclear in how to proceed. I often feel the same because I don’t know where they are coming from and what has or has not been discussed in the past. I typically am meeting them for the first time.
Uncertainty about how to move forward is very common when a conversation wasn’t had about what to do if this happened.
What makes the situation even more challenging is when the patient is too sick or confused to tell us what they want. When a person is living with dementia they lose the ability to make their own decisions permanently typically in the late early to middle stages of disease.
Early on, if they become sick they may lose the ability temporarily while they are ill.
When a person can no longer speak on their own behalf or weigh in their decision maker is left to make the call.
I am here writing this because people are almost never prepared and I aim to change this.
People with dementia need a power of attorney who is comfortable with tough conversations and speaking on their behalf. Goals of care conversations are not just about end of life.
People can live for decades after a diagnosis of dementia and at some point, likely sooner than you would expect or wish, they will become reliant on their medical decision maker to choose their medical care for them.
I urge you to not wait to talk about goals of care. It is not all about the end of life. It is about what living means to you.
Quality of life is essentially how we would choose to live while we are alive.
Consider the following questions.
What does “living” mean to the person with dementia?
What lights them up?
What makes them smile?
Are there things in their life they would not be ok living with, what about living without?
Where do they want their care? At home or in a facility?
What will they say if they can no longer recognize their family members?
What if they still smile and seem to have pleasant moments, but no longer walk, talk, or feed themselves?
These questions can spark conversations that very much need to be had.
What makes a good quality of life is different to each of us and will change over time.
Determining what quality of life means to someone will help you choose their goals of care.
My person with dementia will not talk about their wishes. As their decision maker, what should I do?
If the person with dementia will not participate in these talks, so be it.
It still falls to their medical decision maker, to answer these questions. It falls to you.
Answer the questions as if you were them when they had a healthy brain.
Reach out to the people close to them. Talk to their friends and other family members.
Discuss what makes the person with dementia who they are. What do you believe quality of life means to them?
Every medical decision you make as a dementia caregiver needs to line up with the person with dementia’s goals, values, and care preferences.
They still have these goals, values, and care preferences even if they are no longer able to tell you what they are.
You’ll have to choose what you think they would say if they could.
You’ll need to revisit these goals every time a medical issue comes up or the dementia symptoms worsen.
Let’s try an exercise in visualization. We are going to picture your person critically ill.
Imagine yourself in the ER. Picture me there in my scrubs, standing at the foot of your person’s bed.
I’m telling you your loved one is critically ill, and their lungs have failed. The standard treatment is to put them on a ventilator (machine to breathe for them) and put them in the intensive care unit (ICU).
After I intubate them (the procedure to put a tube into their airway so they can be hooked up to the ventilator machine), we start them down a pathway of receiving critical care.
I explain to you that your person will have multiple IV’s. We might have to put a large IV in their neck, chest, or groin so we can give many medications, or because your person’s arms are too challenging to get a reliable IV in, or if they need IV drugs to artificially raise their blood pressure.
They will not be able to eat or drink and will have a catheter (tube) into their bladder so we can make sure they are still making enough urine. They will be sedated with medications to make them drowsy and given pain medications because it is uncomfortable, scary, and confusing to be as sick as they are. They will not be able to talk or walk.
Nurses and techs will be in and out of their room checking their skin, the pumps giving meds, how much urine they are making, their mental status, and if they are in pain. They will be monitoring so many things very closely.
Respiratory therapy (RT) will be rounding to monitor their breathing and the ventilator. The goal is for the ventilator to do the best it can to help their lungs heal, or allow your person time to recover from whatever has caused their lungs to fail. The ventilator can damage the lungs itself and will need to be closely monitored.
The physician led team ICU will be there overseeing all aspects of their care. Multiple specialist physician led teams will be coming in based on which of their organs are not working well.
They will try to keep your person sedated and help them rest. We know it can be hard to get true rest in the ICU setting with noises, lights, and people in and out.
Unless we have been directed not to ahead of time, if your person loses their pulse (we can not feel their heartbeat in their wrist, neck, or groin), we will start chest compressions which is part of CPR (Cardiopulmonary Resuscitation).
Not being able to feel someone’s pulse anymore is when we say things like “code blue” or “cardiac arrest.” This means the person is dying and may die despite our interventions.
We have to push hard, fast, and deep on their chest for effective CPR to give them the best chance of getting their pulse back. We might fracture their ribs in the process.
If we get their pulse back and stabilize them, we will likely be talking to you about other treatments. You should ask about what is likely to happen next.
Unless we are directed otherwise ahead of time, treatments including procedures, might happen without being able to talk to you because the standard of care is to keep the person alive.
What do you think about what I’ve described?
That was a brief description of the care many, if not most, of the patients in the intensive care unit at the hospital nearest to you are receiving right now.
There are obviously nuances depending on the patient’s age, underlying medical issues, and the condition they are currently fighting.
What I have described above is part of the standard of care once someone is on a ventilator and their goals are to be kept alive.
People either get better with what we do, or they do not survive.
Sometimes their family decides to stop the care we are giving and let them pass naturally.
Modern medicine being the way it is these days, we really can keep a lot of your organs functioning, when they would clearly have no chance outside of the hospital setting.
I did not have you visualize this to scare you. I want you to be informed.
Most of us would happily receive this level of care if it would mean having the opportunity to age with our partners and enjoy quality time with the friends and family we hold dear.
On the other hand most of us know what quality of life means to us is going to change as we age.
If we value quality of life our goals of care will need to change as we develop diseases which could negatively impact our quality of life or put us at risk of serious medical conditions.
When you are considering goals of care and speaking with a healthcare worker about this please keep in mind... Those of us that work in the hospital setting are going to hold biases.
Here’s some honesty for you, healthcare workers are burdened by seeing people who are frail, who have underlying progressively worsening conditions that can not be cured, receiving full treatment and ICU level care.
What we do makes patients uncomfortable, it is often painful. We often take away their quality of life while they are in the hospital to try and save their lives.
It is not uncommon for us, in conversations between ourselves, to say we feel we are torturing a patient or causing them more suffering.
We often question why someone would want to continue to prolong their life when by all accounts from the people who love them, they have a poor baseline quality of life.
When the patient is not making the decisions anymore, and instead it is a family member as medical decision maker (ex: medical power of attorney), we often feel they don’t truly understand the choices they are making for their loved one.
We see people making medical decisions when they are overwhelmed, obviously under significant stress, and emotionally drained.
We know many of you will struggle to think of the big picture when your family member is unexpectedly very sick with or without dementia.
That being said, we care for patients and see them at their worst.
Oftentimes it is hard to imagine them healthy or happy with the way they are living out there in the world.
People don’t often come back to us when they recover to let us know how well they are doing now. More commonly we see the same patients we cared for a few months ago, now seemingly in a worse state, after they “recovered” in rehab.
Side note, we love having life saving stories to recall on a bad day. If you credit us with saving you or your loved one’s life, send us some photos and a note. You might just make our whole year. I still have a story that fills me up from years ago when I’m feeling bad at work.
My key point is we are biased, but please recognize this comes from a place of not wanting to hurt people or make their lives worse after they leave the hospital.
We don’t want to choose anything for you. We want to be able to have open honest conversations with you about what to expect so you can understand the treatment decisions you are making.
We want you to make informed choices knowing what your life might be like if you survive.
We want our treatments to line up with your wishes. The same applies when you are speaking for your person.
This is why you need to determine the goals for your medical care before you, or your person with dementia becomes critically ill. Before you have to step in as medical decision maker.
When we come to you wanting to talk about goals of care. Tell us about your person. What are they like on a day to day? What makes them who they are? What would they say if they were there with us making decisions with a healthy brain? Help us know the decisions we are making are what they would want.
You might already know your person no longer wants treatments that would prolong their life because they would not be happy with how they are living now. In that case, you will want to talk to your person’s physician or qualified medical professional about getting a DNR order form on file.
Assigning them with “Do-Not-Resuscitate status” would be appropriate in that case. It will protect their wishes. You should also ask about a Physician’s Orders for Life Sustaining Treatment or POLST form. Many states have made this a legal document.
You can read more of my thoughts on the DNR form by clicking here.
You can also find me on social media (Facebook, Instagram, and LinkedIn) to hear more about these forms.
You should also ask for a palliative care or hospice evaluation. We’ll talk more about these services in another post, but know that they serve to protect and preserve quality of life. They do not end people’s lives sooner. Sometimes people even live longer than expected with these services on board.
What if your person would want full treatment now, but not in the future?
Maybe you believe your person would most likely not want to go to the ICU, or be on a ventilator, but might be ok with this depending on how likely they were to recover with a similar quality of life they had beforehand.
Maybe you don’t think they would want to be a DNR just now, but you think there is a time where they would want that.
In these situations, it is very important to determine at what point they would no longer want life prolonging treatments.
This is why defining what quality of life means to them is critical.
When they hit that point, the tipping point, I call it. The point where their quality of life is not what they would deem acceptable, you’ll want to consider using the DNR and/or POLST forms to protect them from more aggressive treatments.
While you are waiting, before they hit their tipping point, every time they have a medical issue, you’ll want to ask the medical team about expected outcomes.
Ask how the treatment could affect their quality of life. You’ll need to weigh their current quality of life, underlying medical issues, severity of dementia, and their age to feel comfortable choosing which treatment you go with. That is ok. That is what the medical team will help you with.
If you want to learn about this and have a plan for these situations ahead of time, that is what I do.
I can help.
You can create an individualized plan for your person by anticipating the decisions you will have to make.
This is what I teach inside my course, “Make Your Plan with Dr. Lamb.” Click here to read about it and to enroll.
I will help you understand what medical issues your person is most likely to face and teach you about the specific treatment options to treat those conditions.
Getting this done frees up space in your mind which is one of the main reasons I encourage every medical decision maker to go through this process.
You know what your loved one would want better than we do especially when you are making decisions from a place of being informed.
If you think your person would choose to continue full treatment with ICU level care, intubation and CPR, in the face of poor quality of life or severe dementia, that is ok. This is an option.
There are a few things I would do in your shoes to make sure that they truly are making an informed choice now, or back when they decided this was their goal.
Consider talking to their doctor about their goal for full treatment and see what the doctor’s response is. You could also talk to a close friend or family member about this decision.
Please remember that your brain is healthy.
You are in a position now of being able to become informed. You can learn about available options for care and the pros and cons, risks and benefits of different treatment options.
Ask yourself, if I could teach my person all that I know and they had a healthy brain would they still choose the same thing?
If the answer is yes, then full treatment honors their wishes.
Keep asking yourself this question as time goes on and things come up.
As long as you can answer yes, knowing all that I know, they would still want to have care that focuses on keeping them alive, you are respecting their goals and can follow that path.
I do want you to be aware that the medical team may come to you and tell you that continuing life prolonging care is futile and should not be continued. It is part of our duty to tell you this.
You have a tough but important job as a medical decision maker for someone living with dementia.
Remember as decision maker (ex: medical power of attorney) you are speaking for your them.
They would be allowed to change their mind if they had a healthy brain. We change our minds all the time when we learn new things.
You know them best. You are doing your job if you make the choice they would make if they were there next to you, listening in, applying what they have learned to their own situation, and weighing out the pros and cons risks and benefits.
You will never regret having done this work. Having considered their goals of care and what quality of life means for your person prior to a medical emergency is only going to help you be less stressed in the moment you have to make a decision.
I can promise you that.
You’ve got this caregiver! I am here to help you.
If you are needing inspiration or motivation to have a goals of care conversation and determine what quality of life means for your person, check out this article I wrote (click here).
When you are ready, come enroll in my course. It is a one stop shop for all you need to know as a medical decision maker for your person living with dementia. Click here to read more about it.
Feel free to email me with questions at brittanylamb@blambmd.com
One final thing, here’s the link to the Facebook live that inspired this post.
All of my Facebook live videos live inside my free community on Facebook, Medical Decision Making for Your Loved One with Dementia. Click here to request to join (make sure to agree to the group rules).
Until next time, all my best to you,
Brittany Lamb, MD