What is a MOLST form?
A MOLST is a simple, two page form that provides medical orders for physicians to follow in case you are critically ill and not able to speak for yourself. In some states, a MOLST form is called a MOST, POLST, or POST, but they are essentially the same document. Think of a MOLST as a handy cheat sheet of your medical preferences for physicians to have in case your are quite ill. As always, if you are able to make your own decisions, what you say will always trump this form. Once you complete the form, you can change it at any time.
How is a MOLST Form different from an advance directive?
While an advance directive is often a general document to communicate your medical wishes, a MOLST form differs in that it lists very specific life sustaining medical instructions, such as whether you would want CPR, to be on a ventilator, or have a feeding tube. Unlike an advance directive, which is a great document for all people to have at every stage of life, a MOLST form is intended for patients with advanced age or advanced illness where there is a high likelihood of needing significant medical interventions in the near future.
Who completes the MOLST form?
The MOLST form is completed between the patient and their physician after a discussion. In some states, a MOLST can be completed with a Nurse Practitioner or Physician Assistant. If by the time a MOLST is being completed, the patient is too ill to discuss their own wishes, the form can be completed between the Medical Power of Attorney (POA) and the physician.
What are the medical interventions on the MOLST that I will need to think about?
There are 8 life sustaining interventions on the MOLST form. Here they are listed, but I will explain each one in more detail below:
- Cardiopulmonary resuscitation (CPR)
- Ventilation
- Antibiotics
- Blood transfusion
- Artificial nutrition
- Hospital transfer
- Medical workup
- Dialysis
What kinds of decisions do I need to make about each life sustaining intervention? Help! I am feeling overwhelmed.
Don’t panic! It’s basically a multiple choice test. For each of the 8 medical interventions listed above, and discussed in detail below, there are essentially four multiple choice options that span the level of care you would want. You can download a copy of your state’s MOLST form here and follow along.
Generally, the options for each intervention look as follows, from least aggressive (and most natural) to most aggressive:
A. Do the least invasive medical intervention, focus on my comfort, and allow nature to takes its course.
B. Do some medical intervention, but keep it less invasive, such as oral medications rather than intravenous ones
C. Do the most medical intervention, even if it is invasive and may only prolong my life, but not cure my medical condition. The intervention may be painful, but your doctors will do their best to minimize your discomfort. Do this intervention indefinitely, until I either pass away or there is a discussion with my medical POA who will need to decide when enough is enough and this intervention should be withdrawn. (Side note: this option puts your POA in a difficult spot, as withdrawing care is one of the most difficult and heart wrenching decisions. I write about that more here).
D. Do (C) as above, but rather than indefinite or until deemed futile, place a time limit of my choice. (Typically, I recommend no more than 2-3 weeks as most conditions will turn a corner by that amount of time and either start to improve, or will be clearly futile.)
The 8 interventions up close
Okay, 8 medical interventions and each with 4 multiple choice options. This is not too overwhelming! And remember, the MOLST form is only two pages. Plus, your physician completes the form with you and will answer specific questions. Let’s look at each of the 8 interventions up close. Let’s start from most straightforward, then move to the most nuanced.
Blood Transfusion
Blood transfusion – would you accept a blood transfusion to save your life or to make you feel substantially better? Contrary to common belief, most blood transfusions are not used in traumatic injuries, but actually used for other causes of anemia (low blood counts). The anemia is most frequently from internal bleeding (often intestinal), chronic kidney disease, cancers, obstetrics/gynecological bleeding, and related to surgery. The risks of contracting an infectious disease, such as HIV or hepatitis, from transfused blood is extraordinarily low now with modern screenings. Additionally, you are not “taking away” blood from someone else if your physician recommends you have a blood transfusion for your condition.
I usually advise people to leave this option open to accepting a blood transfusion unless you have a specific religious objection to taking blood.
Hospital Transfer
Hospital transfer – this is one of the easiest and hardest to understand. The scenario is, if you appear to be quite ill, do you even want to be taken to the hospital? This is easy to understand if you are 95 years old, living in a nursing home, bed-bound with dementia, have been to the hospital 5 times in the past year, and are living on borrowed time. At some point, you might say, enough, please just let me be and if I am very sick, allow me to die at home without another hospital visit. On the other hand, this is a difficult situation to imagine if you are still quite healthy. I typically recommend patients select to leave open the option to go to the hospital, but know that your POA may change that in the future if your condition significantly worsens.
Medical Workup
Medical workup – similar to the above intervention about hospital transfer, this is difficult to imagine when you are quite healthy, but easy to answer when you are quite sick. If you are at the end of your life, there may come a time when you say, I am very sick, allow me to die at home without another IV stick or X-ray to try to figure out just how sick I am.
Antibiotics
Antibiotics – In the event that you need antibiotics to treat a serious infection, would you want them? This seems like an odd question, but keep in mind some of the most peaceful deaths can be from an overwhelming infection. You may decide that if you are sick enough or old enough, you would forgo antibiotics and allow the infection to run its course.
Take the case of an elderly lady in a nursing home who has been admitted four times in the past six months with a common, severe, recurrent intestinal bacteria called C. difficile (“c-diff” in circles where it is well known). Each time she gets another C. diff infection and goes to the hospital, she returns to the nursing home weaker and weaker, with a lower quality of life. She may decide that if she gets very sick again, she would rather not be treated with antibiotics and rather pass away from the infection.
If you would like to do a trial of non-invasive antibiotics, you can opt for just oral antibiotics, but not IV antibiotics. Lastly, you can choose to allow oral and IV antibiotics as needed. I typically advise patients to leave their options on this one, but talk to your POA about your end-of-life values.
Dialysis
Dialysis – if your kidneys fail and you are no longer able to filter your own blood from toxins naturally, would you want dialysis to act in place of the kidneys? Dialysis is a process where a machine hooks up to you through a large IV and takes blood out, filters it, and returns it to your body. To keep your blood sufficiently filtered, dialysis is usually performed about three times per week and takes four hours each time. If you would like dialysis, would you just want it only in the short term in case your kidneys recover on their own, or would you want to be on it indefinitely if your kidneys fail? Keep in mind that death from kidney failure is generally a peaceful death.
Artificial Nutrition
Artificial nutrition – if you are not well enough to eat or drink on your own, would you want IV fluids and/or artificial nutrition to be used initially to sustain you, but then later to prolong your life? IV fluids are given through a standard IV in your arm, and artificial nutrition can be administered through a feeding tube into your stomach or through an IV. Near the end of life, if you are not conscious, you are not hungry or thirsty. There comes a point when these interventions just prolong your life without adding any quality. The feeding tube, in particular, can be uncomfortable and increase your risk of infection.
In the case of end-stage dementia, fluids and food refusal are part of disease. It can be very uncomfortable to feed these people after a certain point in their illness.
Ventilation
Ventilation – this is a question about how much support you want to offer your lungs. Scenarios where you might need help breathing are pneumonia, after a stroke, or in a systemic infection where you are delirious. Often times, the breathing support is temporary and buys time while the underlying condition is treated, for example, with antibiotics. I will get to the more permanent ventilator scenario a little later.
The respiratory support is generally upgraded in a stepwise fashion:
The first step would be minimally invasive options, including an oxygen tube under your nose, then a mask with oxygen flowing
–>The next step is to use CPAP, then BiPAP, which are moderately invasive methods as they use masks with forced air into your lungs. These are generally not very comfortable, but no device is in your throat. An important distinction here is that in some hospitals, CPAP and BiPAP cannot be given on a regular floor and you need to be upgraded to the ICU to get these interventions.
–>The last, most invasive, breathing intervention is a ventilator. In this case, a rigid tube is inserted down your trachea (windpipe) and a machine pushes oxygenated air into your lungs with each mechanical breath. Because this is invasive, you need to be sedated and in the ICU for the treatment. The hope it your condition improves and the tube can come out, but not always.
Of course, if you are already quite ill and with a low quality of life (for example, end stage lung cancer), you can always choose not to enter this cascade of breathing support at all. Your doctors would make sure you are comfortable until you passed away.
Permanent Ventilator Situation
Generally, people who end up needing a ventilator enter the hospital without any breathing support and quickly deteriorate to needing one. The question becomes, how long to leave someone on the ventilator? As long as you are improving, you will not be removed from the ventilator. Your doctors will continue to give you more time and reassess frequently. In the scenario where you are not improving, your POA will need to decide when, if ever, to remove the breathing tube and disconnect you from the machine. Of course, if you have an advance directive or MOLST, that will guide them.
As far as timing of how long to leave a person on a ventilator, there is a big shift after two weeks because that is when you will need to be moved from a temporary ventilator to a permanent one. The machine is the same, but in the temporary case, you are connected to the machine through a breathing tube though your trachea (windpipe) that enters through your mouth. After about two weeks, the temporary tube causes too much damage and it needs to be replaced with a more permanent tracheostomy (“trach”) tube. A tracheostomy is where the tube is surgically inserted through the neck to allow a permanent connection to the ventilator. People who are permanently connected to a ventilator often live in long-term care facilities where they can be properly treated until they get better (rare) or pass away.
The permanent ventilator is what most people refer to when they say “I don’t want to live on a ventilator,” or “pull the plug,” but others might say “I want everything done to live as long as possible.” The beauty of a MOLST form and an advance directive is that they remove this almost impossible decision from your POA because you have already decided for them.
Cardiopulmonary Resuscitation (CPR)
While the second page of the MOLST form is dedicated to all the medical interventions above, the first page of the MOLST form is entirely dedicated to the question about CPR. CPR is a procedure performed when your heart stops beating and you stop breathing. In other words, you have suffered a cardiac arrest and are dead. The goal of CPR is to restart your heart to get blood pumping again to your body. In the interim, chest compressions are used to manually move the chest to pump blood from the heart through the lungs to provide oxygenated blood to your body, most notably your brain. Electrical shocks are used in an attempt to restart the heart.
If you do NOT want CPR performed, you need to have an easily accessible Do Not Resuscitate (DNR) order signed by a physician. By default, if you do not have a signed DNR order, CPR will be attempted by EMTs/paramedics.
Since CPR is such a nuanced intervention, I have a separate article dedicated to the topic.
I am ready to complete my MOLST. Now what?
Download your form from your state and make an appointment with your primary care physician to review your choices. It is best if you make a dedicated appointment to complete this form so you are not rushed. It is always challenging to give a MOLST form adequate time when patients try to complete it during a yearly Physical Exam. You may bring your POA to this appointment if you think it would be helpful. You can also discuss your decisions with them before or after your physician signs it.
What to do with your signed MOLST
Once the MOLST form is signed, your physician will keep a copy. You should have a copy, and given copies to your POA(s) and back-up POA(s), and also store a copy where it can be easily found in an urgent situation. The form does not need to be notarized in most states.
What if I want to update my MOLST?
No problem! You just need the updated copy to be signed by your physician and make sure your POA(s) get an updated copy. If two copies appear later, your healthcare team will honor the most recent version.