As an ER doctor, I see dementia family caregivers, and my patient’s in general, making a huge mistake when it comes to care planning.
They misunderstand, and believe having a living will and a DNR (Do-Not-Resuscitate) form will be enough to guide them in making medical decisions.
You can not use these documents alone when making medical decisions for someone with dementia.
Please don’t do this.
These documents are useful and have their place, but they are not all encompassing.
The DNR form is incredibly useful to paramedics and ER staff. It is appropriate for many patients to have in place.
However, it is limited in its scope, only applying to a bundle of care used in one clinical situation.
The Living Will often has little to no value in the Emergency Department.
Read on to learn more about the DNR, the living will, and what you should consider in addition to these forms.
DNRs are only applicable when someone is dying or has died.
DNR orders are used only when someone is critically ill and dying. The person has no pulse and they are not breathing adequately or at all.
Medical people will say the person “arrested,” or “coded.”
Cardiac or respiratory arrest is likely to be listed as the person’s cause of death if they can not be resuscitated with return of their pulse.
We should be able to physically feel the pulses in someone’s neck (carotid artery) and groin (femoral artery). These arteries are central, close to the heart.
Even when someone is very sick and their blood pressure is low, we should still feel a pulse if their heart is still beating like it should.
When someone does not have a pulse, they are dead or dying.
Their heart is failing or has failed.
Your heart is a pump.
That is its job.
It pumps blood to your lungs to have oxygen put back into the blood.
The blood then returns to the heart from the lungs and is pumped out to the rest of your body.
When the heart is failing as a pump, blood doesn’t get out into the body well.
When this becomes severe, a person can lose their pulse and die.
There are many causes for your heart to stop working and not do its job as a pump.
A discussion of the most common reasons can be had another time.
What is done when someone loses their pulse and does not have a DNR form?
First responders and medical staff start the process of “resuscitating” them as fast as possible.
The goal is to intervene so the heart starts beating strong enough that their pulse can be felt again.
How we intervene and attempt to accomplish this varies slightly depending on what we think caused the issue.
Because this is incredibly stressful to everyone involved, there is a standardized process to begin with varying protocols to work through.
The heart’s electrical pattern, if there is one, is the main guide as to what protocol, or pathway, we follow.
The first step for every patient is to immediately start chest compressions.
We push hard on the chest. It must be hard and deep or there is no benefit.
With effective chest compressions, we commonly feel and hear the patient’s ribs breaking.
We only take a break from chest compressions every two minutes to feel the groin or neck, checking if the pulse is back. At the same time we look at the monitor attempting to detect the heart’s electrical pattern. This is called the heart rhythm.
There is a device we use (when available) to deliver continuous chest compressions. Until it is set up, we rotate through staff members so we don’t physically tire out.
We stop chest compressions only when we get a pulse back or when we have exhausted what we can do medically, and the patient has died.
While doing chest compressions, a team of people simultaneously do the following things:
1- Hook the person up to the cardiac monitor. This is so we can visualize the heart’s electrical pattern, the rhythm. We place pads on the chest in case we have to deliver electricity. You should know, it is more common that the patient’s heart can not be shocked, unlike what you see on TV.
2 – Establish access to the veins with an IV or into a bone with a drill to have a way to give medications. The most common medication given is epinephrine.
3 – Give oxygen and help support breathing. We can do this in several ways. In the ER, we commonly intubate the person, placing a tube through their vocal cords and into their airway, the trachea.
Chest compressions and steps 1-3 are the components of cardiopulmonary resuscitation (CPR).
CPR is a bundle of care.
The objective is to troubleshoot and attempt to correct what caused the person to arrest and lose their pulse.
We act where we can to try and get their pulse back.
Intubation often goes along with CPR because it is how we have the most control over someone’s breathing.
Intubation is a procedure. After the patient has the tube in their trachea, we can hook them up to a machine called a ventilator if their pulse comes back.
This machine is amazing.
Simply, it delivers oxygen and pressure. It makes the patient’s chest rise and fall.
The person does not have to be breathing on their own at all and it will help them exchange oxygen and carbon dioxide.
It is life support.
Remember CPR is only started on people who are dying. Many will die despite our best efforts.
I want to drive this point home;
There is a high risk of permanent death if someone does not have a pulse.
This applies to people of all ages.
There is also a high risk of worsening cognitive or functional disability if someone requires CPR and intubation due to a cardiac arrest.
The longer someone does not have a pulse, the more likely they are to have a worse quality of life if we are able to resuscitate them and get their pulse back. The less likely their brain is to recover to the way it was.
What about if you or your person with dementia is not actively dying, but is critically ill?
The DNR is not applicable in this situation because they do not currently need CPR.
This is the major issue I see with people thinking a DNR will help us, the medical staff, or them, the decision maker, choose treatment options.
Critical illness outside of cardiac arrest is more common.
When someone is very sick, we often have time to intervene medically before they “arrest” and have no pulse.
There are many other treatments that need to be understood, considered, and decided about the use of, outside of CPR.
It is your job as someone’s medical decision maker, to think about these things and have a plan in place in advance of needing to make a decision.
Whether or not someone wants intubation must be considered separate from its use along with CPR.
It is more common that we intubate people to support their breathing when they still have a pulse.
They are critically ill, but they do not need CPR yet.
It is possible that they could have a cardiac arrest if we do not intubate them.
Respiratory failure, failure of the lungs, is a cause of arrest. Your lungs and heart work together.
Considering what you will do in a situation in which your person with dementia’s lungs fail is important.
Intubation is just one intervention in critical care you must learn about.
There are many other things we can do to support someone when they are critically ill.
These treatments and interventions serve to prolong life.
They are not discussed in a traditional DNR form.
Some may be included in a POLST (Physician’s Orders for Life Sustaining Treatment) form.
Occasionally they are addressed in a living will.
A DNR form only covers CPR and intubation in the setting of cardiac arrest. I hope it is clear now why this form is not enough.
Please do not interpret my discussion of this topic thus far to mean that I do not support the use of DNR forms.
That could not be farther from the truth. They are underutilized in my opinion.
People whose goal is to be allowed a natural death, should have a DNR form.
These people want to be allowed to die if they lose their pulse. They do not want to have CPR or be intubated as they are dying.
I could write an entire article dedicated to the situations when someone should consider having a DNR, but that is not the purpose of this post.
My objective here is to convince you that a DNR form and a Living Will alone do not provide enough information to guide your medical decision making in an emergency situation.
Next up, my discussion of the Living Will. I'll be covering my "beefs" with these documents in general and what you need to consider in addition to both a DNR and Living Will.
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 group I run.
https://www.facebook.com/groups/dementiamedicaldecisionmaking
What about a medical POA. Does that cover it
Hi Pamela, thanks for being here and reading the post! A medical power of attorney (POA) is a legal document. It lets a person choose and name someone they want to make medical decisions and care choices for them if they are no longer able to speak and choose for themselves. A medical POA on its own does not address any treatment options.
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