The answer is no.
Absolutely not.
Let’s talk about the concept of “hospital transfers.”
I want to give you some things to think about and consider for your person.
First, what does hospital transfer mean?
When I use this term I am referring to your person physically leaving where they live and being brought to the hospital.
They are being “transferred” to the hospital from their home, your home, or a residential living facility by way of car or ambulance.
You should be aware this term is also used for moving someone from one hospital to another, but that is not what we are discussing here.
When people come to the hospital for unplanned care they come to the ER first.
Their care begins in the ER. We decide which tests to run and give our recommendations about whether someone should stay in the hospital or go home.
Whether or not your person is brought into the ER, or stays in the hospital, should be dependent upon their goals of care.
If you’ve been reading the blog or following me on social media for awhile you’ll know how strongly I feel about goals of care (GOC).
We base every medical decision off this overall goal.
I can teach you how to determine your person’s goals of care now and into the future inside “Make Your Plan with Dr. Lamb,” the online course I created for you. Click here to learn more.
Scroll back in time here on the blog to read other articles I’ve written for you on goals of care.
I want you to know our healthcare system in this country (the US) is set up to do things to people by default.
For most of our lives our main goal, when it comes to healthcare, is to stay alive.
This is why our standard in medicine is to provide treatment to save lives.
We try to keep people alive unless directed not to.
There is nothing wrong with this, unless this is not what the person we are caring for wants.
The standard of care in medicine can present a major issue for those with dementia, especially for those who value quality of life over length of life.
People living with dementia who have this preference towards quality over quantity may not want care which intends to keep them alive.
They may not even want life prolonging treatment started on a trial basis unless it is highly likely, or there is some decent chance, they will regain their current quality of life.
They may not want to be hospitalized at all or only under certain circumstances.
In the hospital we usually run additional tests. We often diagnose new medical problems. The person living with dementia may not want that.
Here’s the problem I see, the elephant in the room; when your person has a quality of life they would say was unacceptable, or poor, they will not be able to tell you.
Your job is to understand what quality of life means to them.
You keep checking in, paying attention so you can speak for them.
When you know they would say, “My quality of life is not good enough to go forward with this treatment or hospital stay,” you will make more confident medical decisions for them.
Always be on guard when making treatment choices for them to make sure you are honoring this value.
Tell the care team they care about their quality of life and the team will likely present extra treatment options to you.
When your person values quality of life, at some point you will need to consider whether it is no longer within their best interest to go to the ER or stay in the hospital.
I would like to help you think through this.
I want you to know hospital admissions are not without risk.
Here are a few reasons why.
We almost always change someone’s medications and the schedule of when they are given.
Sometimes this is 100% necessary because the person is in the hospital due to medications, but often it is because we don’t have the medication or don’t deem it “essential.”
There is risk of infection with a stay in the hospital.
I doubt you’ll find it hard to consider how easy it is to stray far away from the person’s daily routine.
Most of us do not sleep or rest well away from our own bed.
When we take people out of their known environment, change their medications, and disrupt their sleep cycle, it increases the risk of confusion and delirium.
Being sick and in the hospital carries a risk of delirium for anyone.
This risk is higher in those living with dementia.
Delirium is often treated with sedating medications.
There are so many reasons why we use these medications; I won’t go down that rabbit hole here.
The sum of the matter is, in trying to keep someone physically safe while treating whatever brought them in, we could unintentionally harm them.
When might it be appropriate not to bring someone living with dementia to the hospital?
There is a simple answer.
If the person would say they have a poor quality of life and would not want to have their life prolonged in any way, under any circumstances, they will likely not benefit from coming in.
As their medical decision maker you will decide this on their behalf.
Most people do not have an advance directive that clearly states their preference towards when they would or would not want to have specific types of care.
Advance directives like the Living Will do not usually include when the person would want to stop coming to the hospital.
You will not get in trouble for not bringing someone in if you are following what you believe to be their wishes and preferences.
I will insert a caveat here.
Do not let your person suffer because you believe they would not want their life prolonged.
Anyone can come into the ER at any time. It is the safety net of our healthcare system.
Just because your person is in the ER does not mean they have to be admitted to the hospital, even if they are very sick with a new medical issue.
Anytime care needs can not be met at home (wherever that is), we in the ER are there to help.
Common reasons to come, and potentially stay in the hospital, are severe pain and wounds which need attention.
If it is your person’s goal to stay out of the hospital you will need to have a plan for this.
Consider palliative care or hospice.
These are underutilized services which can provide resources that support quality of life and can help someone stay home.
People on hospice usually will not benefit from the ER.
When they do come in, it is typically for injury management and/or need for help with pain control.
The goal of hospice care is to have treatments which serve to provide comfort.
Most of what we do in the hospital has some intention of prolonging life and typically goes against this goal.
However, people on hospice can be admitted to the hospital.
Procedures and surgeries can be done with the intention of comfort.
Comfort care does not mean no care. The intention behind the care is what is important to always ask about.
People on palliative care can have every treatment, procedure, and intervention under the sun.
They value quality of life and are provided the support and resources available in their community to preserve this as much as possible.
They can still have treatments which prolong life.
Palliative care is meant for anyone who is living with a condition or disease that is likely to affect or impair their quality of life.
Generally speaking, hospice is meant for people who have a high chance of dying in the next 6 months.
Palliative care and hospice can help you keep your person where they are currently living if it is the goal to stay out of the ER or the hospital.
They can be started in someone’s home or in a facility.
If your person is living at home it is easy to control when they come into the ER.
When your person is living in a facility it will require more advocacy and communication on your part with the staff where they live.
Have a meeting. Let it be known your person values quality of life and does not want to come to the hospital unless their care needs can not be met in the facility.
Know the policies for hospital transfer where they are living.
One thing you definitely want to ask about is what happens after a fall.
If they fall with injury and clearly need the ER that is one thing, but what if there is no obvious injury?
What if they seem to be acting like they normally do?
Will they call you first to help them decide what to do next or will they send your person by ambulance to the ER right away?
Will there be a different approach if someone sees them fall, or not?
What about if your person hits their head?
I see a patient nearly every shift who has fallen and is now in the ER with no obvious signs of injury on exam. When it comes to testing, what we do, or do not do, can become quite complicated, which is a post for another day.
You need to have a plan for if and when your person falls in their facility and is brought to the ER.
This is something I can help you with.
I have an entire block of lessons in my course dedicated to teaching you the various medical issues that come up with falling. We cover how they are treated so you can incorporate this into your decision making plan.
You will learn to communicate preferences for testing and treatment with staff at your person’s facility and medical staff in the ER. Click here to see what is inside the course.
One more tool I teach and should know about, if you do not already, is the POLST form.
When goals of care are not to prolong life, it is definitely time to check if your state has a program.
This is a portable medical order form which needs to be filled out by either the person themselves, or you, their decision maker, along with a qualified medical professional, like their primary doctor.
Many states’ forms allow you to declare whether or not the person wants to be transferred to the hospital. Click here to see if your state has a program.
Keep in mind, even if your state does not have a program, a POLST form can help you learn some of the treatments you will likely have to make decisions about.
None of the forms include every treatment option, but they are a great start and worth your time reading.
You want to look to see if your state’s version of the POLST form allows you to designate your person as a “no transfer” unless their care needs can not be met where they are currently.
The decision to come to the hospital comes down to your person’s value of quality of life and what their current goals of care are.
When your person is someone who values their quality of life, everyone involved in their care, no matter where that care is happening, needs to know this preference.
There are two major roadblocks for people who prefer quality over quantity in receiving care which lines up with this value.
1- Like I mentioned before, at a certain point the person will be unable to speak for themselves.
They will not be able to say, “Wait a minute, I am not OK with the quality of life I have been living with now. I don’t want to go to the hospital anymore.”
2- You.
The person making decisions for them.
That second point may sound harsh, but keep in mind what I do as an ER physician.
I help people make decisions for those living with dementia (and without) on a daily basis.
I created this blog, my community for caregivers inside Facebook, and my course “Make Your Plan with Dr. Lamb”, because decision makers are usually beyond stressed out and overwhelmed when I interact with them in the ER.
They typically can not tell me what their person’s big picture goals of care are.
However, when I ask about quality vs quantity of life preferences, the majority of people tell me their person would choose quality of life over quantity.
Even with this value clear to them, they struggle to connect this with the medical decisions I ask them to make.
It has stopped surprising me.
I know there is a better way to get you what you need to know. I can teach you.
Full disclosure, to become an informed and confident decision maker will take some of your time.
Taking in the information I teach and following my recommended roadmap will take you about two hours a week for 8 weeks.
At the end you will have a medical decision plan to guide you in the treatment options your person would be ok with now and in the future.
You will have a way to determine when your person’s quality of life is such that they would no longer want to come to the hospital.
You’ll have lifetime access to rewatch the training videos and to view updates and additions.
I believe the healthcare system is failing to set you up for the best situation possible when making real time decisions.
A trip to the ER, hospital, or even into a doctor’s office is not providing the amount of time you need to feel confident as a decision maker.
You need time to process and implement what you learn with a path to follow.
If you are worried about what is going to happen to your person from a medical standpoint….
and you want to learn and be prepared, you are wise.
I created “Make Your Plan with Dr. Lamb” for you. Come check out the course. Email me at brittanylamb@blambmd.com with any questions.
Let me arm you with knowledge so you can have a plan to fall back on and make informed medical decisions.
Take action ahead of a crisis and choose with peace of mind.
I am here to help you.
Until next time, all my best to you,
Brittany Lamb, MD