If you missed Part 1 covering DNR (Do-Not-Resuscitate) order forms, you can find it here.
Now let me tell you about my “beefs” with the Living Will. There are many.
To start, Living Wills are not drafted by medical professionals. They are legal documents drafted by attorneys.
As a legal document they vary in wording, what health directives they contain, and how physicians are directed to interpret them by state.
The language used is often not the same as what we use in medicine.
Many medical treatment options and interventions available are commonly left out.
How they direct physicians to carry out someone’s wishes may be impossible in an emergency situation.
There are practical barriers to using a Living Will in the Emergency Department.
I have seen Living Wills stating care should not be withheld or withdrawn, until two physicians are in agreement that the patient’s condition is terminal.
It is also not uncommon that Living Wills require two physicians to agree and have their opinion certified in writing.
It is possible that an ER physician along with a hospital or intensive care physician could do this, however we also need to be realistic.
ER’s are busy places. ER physicians are being pulled in multiple directions. We need to keep moving and seeing patients.
It might not be logistically possible to keep the department running and get two physicians to come together to determine someone is “end stage” or “terminal”, especially if a care decision needs to be made quickly.
I have worked in a large academic teaching hospital, community hospitals, and free standing ERs and have never been asked to do this.
Nor have I witnessed two physicians coming together in an ER to interpret and act on someone’s Living Will when a patient was critically ill.
Perhaps this is because these documents rarely physically reach us.
I can count on one hand the number of times I have had a Living Will physically present to read in the ER in my career.
This will likely change now that more facilities are scanning these documents into patients’ charts.
Living Wills are useful documents, but when written directing more than one doctor to certify someone is end stage, terminal or incapacitated, there is a barrier of their use in an Emergency Department.
It’s not just the directions of when to implement these documents that can be challenging to interpret. Vague language is also a common issue.
I have seen Living Wills which say not to use “heroic measures” or “aggressive treatments.”
These are subjective terms and up for interpretation for each person.
Difficult to interpret language issues are the most common problem I have found with Living Wills overall.
Because of this, if your person with dementia has a living will, you need to read it and make sure you understand it.
If there are terms that don’t make sense to you and your person can still have a conversation with you, try to clarify what they mean to them.
You can also post questions about the wording in my Facebook group.
You may read that your person does not want treatments to prolong their life if they are in a “coma” or “vegetative state.”
Again, this type of language is a barrier to the use of the Living Will in the ER.
I have never, as an ER doctor, diagnosed one of my patients in the ER with “coma.”
We will not determine that someone is in a vegetative state in the ER. We may be concerned that they will ultimately be declared to be, but we are highly likely not going to say that they are now.
When patients present to us initially, we do not presume they are in a coma or a vegetative state.
The standard in emergency medicine is to resuscitate, stabilize, and re-evaluate.
It takes time to determine if someone is in a coma or a vegetative state.
It is not helpful when the Living Will only directs us on someone’s treatment preferences only when they are expected not to recover.
Only addressing when to end care is a huge problem for people living with dementia who have a traditional Living Will.
There is typically no direction about whether or not to start critical care in the first place.
Living Wills are commonly written in a way that expresses someone’s wishes only when it comes to withdrawing or not adding on more care.
When written like this they technically can not be applied to help us avoid the start of critical care.
The ER is where critical care is often initiated.
Critical care treatment is typically continued, and often expanded upon, by the medical teams in the hospital.
Beginning this care in the ER can set the tone for someone’s hospital stay.
We can stop or withdraw care at any time, but this often does not happen in the ER. Again it is often a logistical issue.
Withdrawal of care in the ER is a lot less common compared to the start of critical care. I start critical care for at least one patient a shift. I help withdraw care that has been started a few times a year.
There are many treatments and interventions we use to “artificially” keep people alive. With dementia, or any underlying terminal illness, it is important to consider if they should be started in the first place.
It all circles back to the topic of goals of care (GOC).
Even if the person can no longer state their goals, you as their medical decision maker will be responsible for making decisions based on overall goals with your person’s care team.
I can not stress enough how important it is to think about goals of care before you are in the ER or talking with a doctor who is asking you what you want to do. Read more of my thoughts on GOC here.
If goals of care are not determined ahead of time, and you, as the person’s medical decision maker, decide to rely on the Living Will to help you, you may find the ER doctor not able to advise you using that document.
I have run into this issue at work.
Let me give you an example of a common scenario.
Let’s say I am in the ER taking care of a patient with dementia who is critically ill.
Maybe they are septic due to a urinary tract infection.
Their decision maker is at the bedside and tells me their person has a Living Will.
They happen to have the form with them, so I read it.
I then tell the decision maker that the form does not tell us what to do in this situation.
The form is not useful to me because it directs me only when to withdraw care.
Or maybe this version of the Living Will is telling me I need to certify in writing with another physician that the person’s clinical situation is end stage or terminal, in order to withhold care.
I often find myself talking to the family decision maker saying things like, “This form may have been filled out before your person had a diagnosis of dementia…
It is your job to speak for them as they would if they were here, their brain was healthy, and they knew what you now know. They would have been allowed to change their mind and update their wishes.
This form can not make the decision for us today.
We can use the spirit of the form to help guide us. Ultimately, you will have to choose what you feel they would choose.
Their Living Will says they would not want their life prolonged if they had a terminal condition. Dementia technically is a terminal condition.
Many people feel that life is worth prolonging in dementia if their quality of life is good, despite it being a terminal condition.
I can not tell you for certain that the reason they are here today and critically ill will cause them to die.
They are critically ill so there is a chance of death, yes, and there is a chance that they will have a worse quality of life if they do live and recover from this medical event.
If your person could see themselves now with a healthy brain, knowing what you know about what is happening, would they want to have treatment to prolong their life?...
Do you think they would be ok with a worse quality of life if they survive this?”
This is the start of a goals of care discussion.
Afterwards I give them the available treatment options and my recommendations.
The Living Will, while physically present, is essentially cast aside.
The medical decision maker is often overwhelmed and unsure when faced with making a choice.
When the patient’s decision maker can not choose at that moment, or wants more time to think on things, we choose the conservative treatment option.
We start critical care that will resuscitate and stabilize their person.
Often this is care that is artificially prolonging the person with dementia’s life.
Meaning without it they might die.
Because Living Wills are often out of date and use non specific language, they do not help us avoid starting critical care in the first place.
This is my biggest beef with relying on a Living Will.
Advanced directives are no substitute for having a plan to fall back on for making medical decisions for your person.
Many people, when faced with critical illness, a low chance of survival, and a high chance of worse quality of life if they do survive, choose not to pursue critical care.
This is often the case as people age and develop chronic diseases that are expected to worsen overtime.
People often choose comfort care when they are faced with choosing between worse quality of life or the potential to live longer.
Some people want certain pieces of critical care, and not others, depending on what quality of life means to them.
All of this is true for people living with dementia as well, however, at a certain point they can not choose for themselves.
They rely on you, their medical decision maker, to speak for them.
Thinking that a Living Will is going to help you make a decision in an emergency is not wise.
Living wills are a tool. They have a time and a place.
In my experience, I have found they often make caregivers more uncertain, and less able to make decisions.
This is why you need to read, understand, and clarify your person’s Living Will if it does not make sense to you.
Please don’t think I don’t support the use of a Living Will for people overall.
If you become incompacitated and can not speak for yourself these documents give you the opportunity to tell a care team and your family what you would want done.
It makes sense to put in restrictions on withdrawing and withholding care for a lot of people.
If I were incompacitated I would want modern medicine and all its interventions until it was no longer working and the chance of recovery was low.
I am willing to sacrifice quite a bit of my current quality of life to keep living, but if my quality of life would be below what I am OK with, I would want my family to withdraw care.
I talk to them about these things because I see what happens when people don’t. Thinking about my death is a hazard of my job.
For me what is worse than death, is suffering with poor quality of life due to a medical event, and continuing to receive care that will not improve my quality of life.
Being alive and not living is something I want to avoid. I do have a personal bias towards less care.
I carry around a heightened concern about being kept alive with poor quality of life because of what I do for a living and what I have seen.
In full disclosure, in my current state of health, I would feel protected by the fact that two physicians would need to agree that I had a terminal disease or end stage condition.
I understand the reason why there is language making it more challenging to withdraw care and why this is appropriate for many people.
Everything will change for me if I develop dementia.
I will update my advanced directives, creating my own supplemental documents if necessary, to be explicitly clear when I no longer want any treatments to prolong my life.
I will make sure there are as little restrictions as possible on my family and the medical team caring for me so my wishes can be honored.
If you or your person has a Living Will, great, go read it, but what else should you do?
Number one, have a discussion about what makes your person have a life worth living, this is their quality of life.
What makes you have a life worth living? Do this work for yourself as well.
Quality of life is a key part of making every medical decision.
Like the cornerstone of a building, you need a plan for goals of care
That comes from a foundation of knowing your person’s quality of life (QOL) goals. How much do they value QOL compared to being alive?
If your person values prolonging life and being alive, more than living with quality of life, that is fine. The standard of care in medicine is to do things to people to keep them alive.
If your person feels there is a difference between being alive and living, you have to do the work of determining what quality of life means to them.
Consider these questions for yourself as well.
Who should you tell about your care preferences?
In a nutshell, everyone.
Tell your friends, family. Tell anyone who would bring you to or show up to the hospital to check on you.
Tell the people that love you and will have to make choices for you if you can not.
Emergencies are common. They happen every day.
You will almost certainly be a patient in an ER at some point in your life.
Maybe you have been already.
Use advance directives like Living Wills as the tools they are, but not as a substitute for conversation and planning.
We have to normalize talking to each other about what matters to us if we become unable to speak for ourselves.
Modern medicine will continue to improve.
If we keep you alive, it should be because you want us to.
If we keep your person alive with dementia, it should be because they would tell us to do so if they were still able to make their own medical decisions.
If this post has caused you to think of questions, please reach out to me.
You can email me at brittanylamb@blambmd.com.
You’ll also find me answering questions in the Facebook community I started to help caregivers with medical decision making.