March 06, 2019

One of the best-kept secrets when it comes to guardianship and end-of-life decisions is the MOLST and the OPWDD checklist.  I was recently sucked into the MOLST black hole when I attempted to implement end-of-life decisions for my brother, Scott.  As his legal guardian, I thought I had the authority to implement Do Not Resuscitate (DNR) and Do Not Intubate (DNI) orders, as well as to withhold and withdraw life sustaining treatment.  To my dismay, I discovered that I was wrong.  While these powers are listed in my guardianship decree, I could not implement my decisions without a MOLST and the requisite OPWDD checklist.  The result was a nightmare.

Disclaimer:  This is where I need to advise you that I am not an attorney and that this blog is for informational purposes only.  It is not legal advice.  For legal advice, you need to consult with an attorney.

This blog addresses the following:

  • What is a MOLST?
  • How does it differ from Advance Directives?
  • Why is it a potential problem for you and your loved one?
  • What can you do about it?

What is a MOLST?

MOLST is an acronym for Medical Orders for Life-Sustaining Treatment.  It is designed to translate the patient’s goals for care into medical orders.  The MOLST form is a bright pink medical order form that tells others the patient’s wishes for life-sustaining treatment.  It includes preferences regarding CPR, intubation, artificially administered fluids and nutrition, antibiotics, and more.  A MOLST is a legal document that must be signed by a New York State licensed physician.  CompassionAndSupport.org offers additional information about the MOLST including FAQs.

How does a MOLST differ from Advance Directives?

Advance Directives such as a Health Care Proxy and Living Will are completed ahead of time and only apply when decision-making power is lost.  Example:  You have a stroke and you are unable to make medical decisions for yourself.  The person you designated in your Living Will or your Health Care Proxy steps in and makes medical decisions for you.

A MOLST applies now and is not conditional on the patient losing the capacity to make medical decisions.  A MOLST is generally for patients with serious health conditions and those facing the end of life.  Example:  You have serious heart issues with a life expectancy of less than one year.  You have a heart attack at home and an ambulance is called.  The EMTs must follow the MOLST directives.  (This is not the case with Advance Directives.)

Why is a MOLST a potential problem for you and your loved one?

The MOLST must be accompanied by an OPWDD checklist if the person is residing in an OPWDD certified residential setting such as a group home (IRA), Intermediate Care Facility (ICF), or Family Care. 

As part of the OPWDD checklist, you must have both the attending physician and a second physician or licensed psychologist whose experience meet very specific criteria sign it.  In addition, an attorney from Mental Hygiene Legal Services (MHLS) must visit the person and waive any objection.  (MHLS has 48 hours to object.) OPWDD must also sign off. 

All of the above must happen BEFORE you, as legal guardian can exercise your powers to implement a Do Not Resuscitate (DNI), Do Not Intubate (DNI) order.  The same applies for other end-of-life decisions such as the ones described earlier.  This effectively removes your ability to make these decisions until MHLS signs off.

The requirement that MHLS waives any objection before you exercise your powers as legal guardian can create a very stressful situation.  It also has the potential to transform a very personal and painful decision-making process into a bureaucratic quagmire.  MHLS’s primary role is to ensure that the rights of the individual are protected and that all required documentation has been completed.  Your objective may be to allow your loved one to die with dignity and comfort.  These are often at odds with one another, causing delays and unnecessary pain and discomfort for both you and the person you are making decisions for.  To find out how the MOLST and MHLS personally affected me and my siblings’ ability to advocate for Scott regarding end-of-life decisions, click here.

What can you do to prepare for the MOLST?

There are limitations as to what you can do because the MOLST is not an Advance Directive and therefore cannot be created in advance.  I have listed below some suggestions to assist you in navigating the MOLST process if and when that time comes.

Familiarize yourself with the MOLST and OPWDD checklist if your child or family member lives in an OPWDD residential setting such as an IRA, Intermediate Care Facility (ICF), or Family Care.  If the person does not reside in an OPWDD residential setting but receives OPWDD services, OPWDD will still need to sign off on it.

Engage in conversations with the person’s physicians early on about MOLST.  You never know when his or her medical situation may change.

If the person has a severe chronic medical condition that may shorten his or her life, begin having conversations with the physician regarding end-of-life decisions.  This is especially true if the physician indicates that he or she would not be surprised if the person died within the year.

If you are associated with an agency that serves the developmentally and intellectually disabled population, request that it offer a seminar or workshop to educate families regarding the MOLST process and checklist.   

ACCESS CNY has published a booklet about making healthcare decisions which is very informative.  You can download their booklet by going to this page OPWDD also offers information about the MOLST process.  I truly hope that this blog helps you avoid some of the frustration and anguish that my family and I experienced during a very difficult time.