Everyday people have unexpected illnesses and injuries that require unplanned emergency medical care.
Medical emergencies are why I have a job.
Kids fall and break a bone. Adults have strokes and heart attacks. People of all ages notice gradually worsening abdominal pain, come in and are told they have appendicitis.
It is also not uncommon for people to come to the Emergency Room (ER) because they were unable to get in to see their regular doctor or the specialist managing that part of their healthcare.
We are there in the Emergency Department (ED) to care for whoever comes in through the front door or ambulance bay.
The ER is the safety net of society and of healthcare in general. It is available 24/7 when something goes wrong and you have nowhere else to go.
I’ve been working as a doctor in ER’s since 2014.
I believe there are things we can all be doing to make these types of visits go more smoothly.
5 things adults would benefit from in planning for an unexpected illness or injury.
You may be asking yourself why I have not brought up dementia caregivers yet. This topic is so important I want to apply it broadly.
You are not off the hook, dementia caregiver, especially if you are the medical decision maker.
All of this applies to you and your person with dementia.
When you have to speak on behalf of someone else and make their care decisions it is your job to own these things. Please become educated and have a plan for how you will act.
Let’s run through the 5 things quickly, and then I will speak to them in more detail.
1-Choose someone to speak for you when you can not.
Designate them as your medical decision maker in a legal document. Whatever it is called in your state. Ex: medical power of attorney (POA), health care surrogate, health care agent or health care proxy.
2-Define what quality of life means to you and tell everyone who cares about you.
3-Take ownership of your medical history.
Educate yourself about the diseases and emergencies most likely to happen to you. Pay close attention to those that have a higher likelihood of making your quality of life worse.
4-Know the medical and legal tools you can use to advocate for yourself or for whoever you are acting as a medical decision maker for.
5-Understand the limitations of the ER.
Ok let’s deep dive.
I can not stress enough the importance of who you choose as your stand-in medical decision maker.
When we are critically ill, we typically can not be counted on to make our own decisions. It can be challenging if you do not have someone speaking for you who knows what you would say if you were able to.
You need to choose someone to be your stand-in medical decision maker. Ideally they live near you and will live longer than you.
Tell them that you want them to speak for you if you can not. Talk to them about what your life means to you.
If they agree, you should legally designate this person as your medical decision maker inside of a document that is used in the state in which you live.
You can do this online or with an attorney. Just remember to follow your state’s requirements to make the form a legal document.
I will call this person your medical decision maker (MDM).
When you choose your MDM make sure they feel comfortable acting in this role.
I commonly see MDM’s struggle to make difficult decisions.
This is more common when a conversation has not been had. Quality of life conversations need to be had. Talking about what quality of life means to you is where you can start your discussions with them.
If the person has a good understanding of what living means to you, they will be better able to choose for you.
Ideally this person needs to have some grit.
They should understand that at some point they may be telling the medical team that you would not want the treatment being recommended.
Based on what quality of life means to you, your POA might need to tell the team, “no,” because, at that point, you would no longer wish to have treatments to keep you alive.
They may also need to tell the medical team to “keep trying,” that it was your wish to have treatments and interventions until you were no longer alive.
Your medical decision maker should be someone willing to have tough conversations and be willing to advocate for you. They need to listen to you, understand your goals and values, and be willing to speak for you.
Medical decision makers speak on behalf of the person they represent.
They should have a healthy brain.
You want them to be capable of learning what the options are, able to weigh out the risks and benefits with the care team, and make the choice you would make if you were there and knew what they knew.
You need to trust your MDM to follow your wishes and be there to advocate for you. It is a job that can not be taken lightly.
Be careful who you choose.
Having a MDM to speak for you doesn’t carry as much weight if you have not done the work in identifying what quality of life means to you.
Determining what quality of life means to you is something only you can do.
There is a difference to most people between being alive and living.
To me, being alive means someone has a pulse and is – on this side of the ground.
Living is how you want to live your life while you are alive.
The things that you do, the people you are around, what makes you want to get out of bed in the morning. It’s what fills you up and gives you purpose.
Only you can decide this for yourself.
When it comes to making medical decisions, you have to keep in mind that we often sacrifice quality of life to keep someone alive.
The standard in medicine is to do things to people, to keep them alive. This is what will happen to you if you don’t define what living means to you.
As an ER doctor offering treatment options to you or your MDM, I want to know whether or not you would be willing to live with with worse quality of life than you have now.
Those of us ordering treatments and carrying them out in the hospital, want you to make choices you can live with.
When you can not speak for yourself we want to help your decision maker choose what you would be comfortable with. Our treatments should match your preferences.
For many of my patients I have discussed this with, they tell me if they get to a certain point in life, and no longer are “living,” a point at which they would deem their quality of life poor; they do not want to continue to pursue medical treatments with the sole intention of prolonging their life.
Here is the issue.
If you don’t tell the people around you that you feel this way, when something happens to you and you can’t speak they will be heartbroken.
They will feel badly about “letting you go” and might not choose what you would want.
Quality of life needs to be identified for all of us.
We must do this work.
Thinking about it, identifying what is important to us. Considering if and when we might no longer feel we have an acceptable quality of life.
Once we have figured out what this means to us, we need to go tell everyone.
Not just our MDM, but the people who we interact with regularly.
Anyone who would want to be there with you, would bring you to, or show up at the hospital, needs to know.
People who are aging need to tell their friends, neighbors, doctors, and family members.
If it matters to you what kind of care you receive, if there are situations in which you would not want to be kept alive, you have to tell people.
Who knows where your medical POA is going to be when you have a medical emergency.
Maybe your advance directives will not be with you, or you will be traveling and they won’t be on file with the hospital.
The more people you tell the more likely you will receive the type of care you want.
We have things about each of us that put us at risk of a medical emergency
If I had a dollar for every time someone told me, it’s in the computer…
You are not a car.
Not everything is in the computer. Plus we all know computers are not 100% reliable.
Again, consider what if you are not near your home hospital when something happens to you?
Hospital and doctor offices’ medical records don’t always communicate.
I can see your previous hospital visits, but usually not if you were out of town or in a different hospital system.
I can’t always see the notes from your office visits with the doctors in our community, even those that come to the hospital to see patients.
You need to have ownership of your medical history.
Know and understand your medical history and what it puts you at risk for.
Your medical history includes the things you have been diagnosed with in the past. Also, what medications you take and what these medications are helping to prevent or treat.
Major surgeries are important to remember. Especially those on your brain, chest, abdomen, spine, and joints. Family history is also commonly relevant.
Own the fact that you drink alcohol every day or regularly. Same thing goes for smoking.
If you take medicine to treat high blood pressure, even if your blood pressure is now well controlled, you still have high blood pressure.
Once you know your medical history you can start to think about what might happen to you and how you want your MDM to act if they are called upon.
Medical emergencies are often predictable after taking a look at someone’s past medical history.
Take any ER doctor who has finished their residency training.
Tell them your age, medications, past medical history and all the information you are responsible for knowing about yourself.
They will rattle off a list of medical conditions you are at risk for, leaning heavily towards diseases that would affect your quality of life and are potentially life threatening.
Yes, we humans are individuals, but we do have similar anatomy.
Our chronic diseases like high blood pressure, diabetes, obesity, and congestive heart failure put us at risk for certain emergencies.
Your primary care doctor should be able to make a similar list for you. They do not treat many of these life threatening emergencies as part of their role in the healthcare system, but they are knowledgeable of them.
It is your job to know your medical history because it will tell you what you are at risk for.
When you know what you are at risk for you can learn about how that condition is treated in case of emergency.
When you learn how it is treated, you can take a look inward considering what you have defined as quality of life for yourself.
Then you can have a discussion with your MDM. Tell them you have considered the risk of a certain disease and you know how it can be treated.
Tell them if the disease happens to you, the treatment options they choose for you need to line up with what quality of life means to you.
Your MDM will be better able to choose what to do based on the conversations you have had.
Here’s an example; let’s say you are 67 years old.
You have well controlled high blood pressure on medications. You have elevated cholesterol, which you also take medications for. Your PCP tells you you need to lose weight and you are a borderline diabetic.
You are at risk for vascular disease.
Your age, high blood pressure, high cholesterol, obesity, and diabetes are risk factors which increase your risk for developing build up of plaque in your blood vessels.
Plaque that can flick off and go downstream in the vessel.
When it goes downstream, it can block off the blood supply past that area.
This can cause the tissue, of whatever organ the vessel is feeding blood to, to be choked of oxygen. This can cause tissue death.
Ischemic strokes, those due to blockages in blood vessels, can happen this way.
Stroke is a major cause of disability and death in the US.
Consider yourself having a stroke where you can not move one side of your body, walk, talk, or eat.
Perhaps if you come into the ER very quickly, we may be able to help.
We could give you medications or send you for a procedure to open up the vessel, but what if we can’t?
What if you have little recovery over the next several weeks to months?
I know this is not fun to picture, but I’m here to tell you this is incredibly common. People in our country have strokes with symptoms like this every day.
What does quality of life mean to you?
Are you ok with being unable to talk, walk, eat? How do you feel about receiving nutrition through a tube that goes from the skin of your abdomen, inside, and into your stomach?
I don’t want to make this choice for you, I want you to make it.
Imagine the care you will need to receive if you have a stroke with symptoms like this and you do not recover your functional abilities.
Can your family take care of you? Do you want them to?
How long would you be willing to have nutrition supplied to you via a tube going into your abdomen? What if you do not recover despite rehabilitation services?
Hopefully you will not have this happen to you.
You will lose weight, not develop diabetes, and make sure your blood pressure stays under control.
Doing this will also decrease your risk of a heart attack, kidney disease, need for dialysis, losing your eyesight, and so many other things I won’t continue to list here.
Take accountability over your medical history. Know what it might put you at risk for.
Make an appointment to talk with your doctor and come up with a list of conditions to consider.
Learn how they are treated and how they can impact your quality of life.
If you care about the treatment you receive matching up with your goals of care, based on what living means to you, you will not regret doing this work.
Use the advance directive tools available to you.
Be aware of the medical and legal tools you can use to advocate for yourself or someone else as their MDM.
To fill out legal forms you must understand what the purpose of the form is, the choices you are making, and their repercussions.
If you can do this, you are likely competent and can fill out your own forms.
If someone is not able to do this, the following legal forms can not be filled out for them.
- Living Will
- 5 Wishes
- Designating someone as a legal medical decision maker
- Durable Medical Power of Attorney
- Health Care Surrogate
- Health Care Proxy
How these forms become legal documents will depend on the requirements of the state in which you live.
You may want or need the help of an attorney to make them legal.
There are other reasons to see an attorney. Many people choose to have a plan for their estate at end of life and how they want their assets to be distributed.
If making a will for this purpose, it will often be recommended to complete these legal advance directive forms.
Medical tools, called medical order forms, can be filled out by you if you have the ability to make your own medical decisions.
In that case, you must know what you are choosing in these forms and understand the repercussions of your choices.
You will often be asked to explain why you are making the choice you are making to be sure you understand.
You can not fill out medical order forms on your own and need to do so with a qualified medical professional. The doctor, nurse practitioner, or PA will help answer your questions and get the form filled out with you.
Medical order forms, unlike the legal documents, can also be filled out by your designated legal medical decision maker. This can happen if you were no longer able to make your own medical decisions.
The DNR and POLST forms are commonly used medical order forms.
A DNR is only used when someone is in cardiopulmonary arrest.
It stands for Do-Not-Resuscitate.
Resuscitation in this case, applies to the treatment we start when someone is dying.
The person in cardiopulmonary arrest does not have a pulse and they are no longer breathing adequately.
The DNR is applied when someone is about to die. They may die despite our best efforts.
If they do survive, they may not have the quality of life they had before.
This could be due to having a brain injury from lack of oxygen during the time before and during the resuscitation.
It could also be that the underlying cause of why they needed resuscitation can not be reversed.
After someone has a cardiopulmonary arrest they will require further critical care which can decondition them overall.
A DNR medical order form is appropriate for people who do not want to prevent their natural death.
They want to be kept comfortable when they start the process of dying.
If they have a cardiopulmonary arrest, they do not want us to put them on a machine called a ventilator to breathe for them. The procedure to put someone on a ventilator is called intubation.
They also do not want CPR.
CPR is a bundle of care. It includes chest compressions, medications, and electrical shocks (only when indicated), and doing whatever is necessary to support someone’s breathing, including intubation.
The POLST form is an expansion of the DNR. It used to stand for Physician Orders for Life Sustaining Treatment.
Now it is just used as a term – POLST.
If someone does not want to be resuscitated, and has a DNR form, they should know about the POLST form.
This form allows people to express their wishes about other medical treatments that are common when someone is very sick and critically ill.
Some states, like Florida, do not have a POLST form available to use.
Some states, like Virginia, do not have widespread use despite it being available.
If the POLST form has not become a legally approved document in your state, it is still wise to look at the form and consider the other treatments you or your POA may have to choose from.
Every person who has a DNR order form should look at a POLST form and talk to their medical decision maker about the treatments it covers.
Consider having one on file if the person with a DNR order has POLST in their state.
In Maryland they have combined the DNR and POLST form into one form called the MOLST. It is one of the best POLST type forms I have seen and covers a lot of treatments to think about.
That’s something else you should know. Not every state uses POLST. Some use their own version. MOLST or POST you may see as well.
The POLST and DNR are medical order forms filled out with you and a medical professional.
Every healthcare worker, including paramedics, that treats the person needs to follow what is documented on these forms.
These forms also move with the person who has them.
As long as the proper form is filled out, it will physically move with the person. From their home, to the hospital, to rehab, assisted living, memory care, nursing facilities.
It can be overturned and invalidated only by the person who signed it.
If the patient fills out their own DNR or POLST with a medical professional, only they can overturn it.
If their MDM fills it out on their behalf, the MDM can overturn it.
This has been a brief discussion of the tools that can be used to direct your healthcare decisions.
I feel very strongly that people should use tools like this to advocate for themselves.
When you show up to the ER and are critically ill, I want to start treatments for you that you are ok with.
Talking about resuscitation and the treatments included on the POLST form is something I do to help dementia caregivers so they can feel confident when advocating for their person.
I teach this inside my online program “Make Your Plan for Dr. Lamb” and explain how you would use your person’s values of quality of life to have a conversation with their doctor to fill out this document on their behalf.
You can learn more about the course by clicking here.
Let me give you some behind the scene info about the ER.
Many of you have been patients in the ER.
I have not myself, but I have accompanied my mom a few times.
Being a patient in the ER often feels like a forced lesson in patience.
It is a chaotic place.
You will not be seen in the order in which you arrived.
You will be triaged and entered into the queue and seen in order of severity.
People with abnormal vital signs, change in mental status, extreme agitation and aggression, traumatic injuries (not just a cut or partially amputated finger, think bleeding all over the place), and serious chief complaints along with concerning risk factors, are examples of patients who will be prioritized first.
Just because you come by ambulance doesn’t mean you will be prioritized.
You will feel like no one is paying attention to you.
You may feel that no one cares about your issue.
You are probably having a terrible day.
Many people feel irritable and in hindsight would say they didn’t handle themselves as best as they could when in the ER.
Like I said, it is a forced lesson in patience and many of us don’t perform well.
My golden rule in the ER is “boring is good.”
Most of the time people sit for hours and feel the inefficiency that is the ER.
It is a machine that never turns off and has an unexpected number of visitors at any given time.
You could be technically allowed to drink and eat, finally!, or have all your tests back.
And still you could be waiting for hours to have someone come to update you, feed and water you, or summarize what you should do when you go home.
It is not an efficient place.
If you are bored in the ER, your day is going better than someone else’s.
Please remember that.
I tell people, especially those who are aging, have dementia, or are medically frail to have a to-go kit.
It is not unwise to have a cell phone charger, a bottle of water, a snack, book, or magazine to pass the time.
For someone with dementia make sure you bring things that will orient them. Their glasses, hearing aids, a blanket or something comforting to them.
Please do not eat or drink unless you are told you can. Patients eating before they were allowed delays surgery times. It can throw off other tests and safety measures. Do not feed a patient in the ER unless you are told by staff that it is ok.
In your to-go kit you should have a copy of all of your advance directives. Your medical decision maker forms, living will, DNR, POLST.
You need your list of medical problems. You should be able to say them without the list, but we want an updated list. Have a list that is updated with your medications as well.
If you take medications that need to be taken at certain times (chemo meds, parkinson’s meds) put a few in your to go bag.
Many free standing ER’s do not have all medications available.
Do not give yourself your medications without clearing it with your nurse.
Understand the role of the ER. It is a fancy triage system.
We are not there to diagnose why you are having a headache, chest pain or abdominal pain.
We are there to assess your risk for “badness.”
It can be impossible for us to determine why exactly something is happening to you.
The system is designed to determine if someone needs to stay in the hospital or if they can go home.
This is accomplished by listening to why you are there, the symptoms you are having, taking a look at your past medical history (including meds, family history, surgical history, how much alcohol you drink, if you smoke etc) and assessing your risk for a serious medical condition.
Based on these things, you’ll likely have testing done in the ER.
Then a decision will be made should you stay in the hospital or should you go where you are currently living. Hopefully you are able to weigh in on this decision.
This is where advocating for someone with dementia can be a challenge.
When someone comes into the ER with a history of dementia overall goals of care need to be known.
We need to know what you need help with that day.
It is essential to have thought about whether or not you are ok with your person being hospitalized.
If you are unable to care for your person with dementia safely at home, please tell us so we can connect you with resources and come up with a safety plan.
Sometimes this involves a temporary stay in the hospital so the social work team can work with you to come up with a safe discharge plan.
I could go on and on about the intricacies of the ER machine, but I’ll stop here by telling you that we wish it wasn’t so busy.
I would love to talk to my patients, most of them, for longer.
Some days it is not possible.
Please understand that we are human and the overwhelming majority of people working in the ER closest to you are there because they want to help the people in their community.
Be patient and be happy you are bored, kill us with kindness.
Have a designated medical POA/medical decision maker.
Someone who knows you, knows what quality of life means to you and will speak for you if you can not.
Talk openly to the people in your life.
The more you make your goals of care and what quality of life means to you known, the more likely the treatment you receive will line up with what you want.
Own your past medical history and what you are at risk for.
If you have serious medical issues, or are someone who doesn’t want everything done to keep them alive no matter what, please use tools to express this in writing.
No matter who you are, have a living will, fill out the 5 wishes.
Consider having a DNR and/or POLST form if that is in line with your goals of care.
Know your goal behind coming into the ER and the questions you would like answers to.
Be aware that we may not be able to answer all of these questions.
You may still need to see other doctors after your ER visit.
Have your to-go kit ready. We will do our best to help you sort out what to do with whatever is bringing you in to see us.
I do hope I never see you in the ER, but if we do meet there, I will be ready to help you as best I can.
All my best to you,
Brittany Lamb, MD