Updated: Aug 26, 2019
Catherine had often discussed with her daughter, Lisa, that she did not want to have any special measures in place when "the end" came. She had been diagnosed with inoperable lung cancer that had spread throughout her body. Despite this, she remained relatively active in her house, cooking, cleaning and watching her favorite program, “The Price is Right”, on a regular basis. Still, home health care workers stopped in daily to help with minor housekeeping chores that she was unable to complete.
“Mom was adamant that she didn’t want to be resuscitated if her heart stopped,” said Lisa. "Especially after watching some medical show where she saw a patient's ribs were broken, and the lung collapsed as the result of CPR. To her, death was part of life and she wanted to be allowed to die when the time came. So, we did her advanced directives and got the DNR (Do Not Resuscitate) order, taping it in plain sight on her refrigerator. We thought we were all set.”
"Attorney Connelly advised us more than once about seeking a MOLST, given Mom's condition, but we put it off, then I just relied on the DNR," Lisa stated. "We knew he was right and yet, I guess it was something I didn't want to accept. Maybe thinking that Mom wasn't really going to go."
But reality was different. One morning, Lisa received a call from her mother’s neighbor that the mailman had seen her mom laying on the floor and called the paramedics. According to the neighbor, they were taking her to the local hospital and performing CPR on her as they wheeled her towards the ambulance. Lisa jumped in her care and headed towards the hospital.
"When I got there, the EMTs were taking the oxygen off of her and removing other equipment that they had used to revive her. Although the doctors did not do anything else based on her medical records, she continued to breathe on her own, in a way that looked very painful," said Lisa.
Lisa sought out the doctor in the ER and asked why her mother's DNR was not honored. "It is," stated the doctor. "We are doing nothing for her except making her comfortable -- and waiting. We are respecting her wishes."
"But what about the paramedics," questioned Lisa. "The DNR was taped to the refrigerator and yet they resuscitated her. Why didn't they respect her wishes? Are they not trained to see where the DNR was?"
“They saw it,” said the doctor. “In fact, they brought it with them and gave it to us when they came with your mom. The issue is, they are not physicians and their job is to stabilize the patient and transport to a hospital where these treatment decisions are made. The DNR does not apply to them”
Catherine held on for another five hours until she died. Following the funeral services, Lisa was focused on getting some answers. When she called the state oversight board, she was told that there are processes in place to address this.
In some cases, she was told, a physician signed DNR could have been honored, but even then, there may have been some confusion about what the role was for the paramedic. so they will usually err on the side of the patient and "sort things out" at the hospital.
In an age of social media, Skype and electronic health records, there must be a better way, Lisa thought, than "sorting things out" at the hospital. And there is. To address this confusion among health care professionals, ill patients and concerned families, most states have developed a form to make this process easier for all concerned. Depending upon the state, this form is known by a number of different names but have similar outcomes. These names include the:
POLST – Physician’s Orders for Life-Sustaining Treatment
MOLST – Medical Orders for Life-Sustaining Treatment
MOST – Medical Orders on Scope of Treatment
POST – Physician’s Orders on Scope of Treatment
TPOPP – Transportable Physician Orders for Patient Preferences
No matter what the name or acronym, these forms are an end of life planning tool that is initiated when a medical doctor expects a person to live less than a year or for other chronic or terminal conditions. This form contains their instructions for what medical treatment they want should a specific health related emergency occur.
These instructions are formulated by the patient and the treatment team and placed in their medical chart and a copy to the patient and/or family/healthcare proxy. These documents do not restrict or stop any form of treatment, rather they spell out what specific treatment levels a patient desires.
For instance, a patient who may have a brain tumor that is responding to treatment may request that any relapse that is related to the tumor not be treated or resuscitation initiated.
But that same patient who is responding well to treatment for the primary problem can ask for resuscitation should a heart attack occur during a chemotherapy treatment.
These documents are innovative approaches meant to ascertain and communicate certain healthcare wishes but they are not designed to replace the traditional end-of-life care communication tools like advance directives. Instead, it augments and supports these very important tools.
Advance directives, including health care proxies and living wills, are legal documents that are effective only after the patient has lost capacity. In other words, a health care agent can make decisions for a person only after he or she has been determined to lack capacity; a living will is relevant only after the patient can no longer be consulted.
This form, on the other hand, is a medical document signed by both the clinician and the patient, and is effective as soon as it is signed, regardless of a patient’s capacity to make decisions, a very important distinction.
The history of these forms date back nearly three decades when the state of Oregon decided to develop a standardized, recognizable and portable document that would be valid across all medical disciplines. Today, Oregon’s POLST is now considered a best practice and acceptable standard of care and has served as the model for other states developing such a tool.
In states where these forms are used, the policies and requirements are relatively uniform, although it is suggested that you check your state's guidelines for specific instructions. However, here is an overview from Rhode Island's policy for your review with the expectations of both the patient and the provider, again, similar to many other states.
What should a patient do in order to qualify for a MOLST/POLST?
Talk to your healthcare provider to discuss your condition, consider treatment options, and decide on your wishes related to life-sustaining treatments.
File a copy of the MOLST/POLST form with your healthcare provider to make your wishes known. Once this form is filed it must be followed by all of your medical providers and in any healthcare facility where you go for care. The MOLST/POLST form may be honored in some other states and is always a good record of your treatment preferences.
Keeps the MOLST/POLST form with you where it is easy to locate (e.g., on the refrigerator, beside the bed, or on the door), and carry it with you or trips outside the home. Make copies and give them to your recognized healthcare decision maker and/or family members.
Amend or revoke your orders at any time. A new form should be completed and signed whenever there are any changes to any of the orders.
What should healthcare providers do about a patient with a MOLST/POLST?
Treat a patient in accordance with the patient's MOLST/POLST form, even if the healthcare provider who signed the MOLST/POLST order is not on staff at a facility.
Ensure a patient's Medical Orders for Life Sustaining Treatment are transferred with the patient if he/she is transferred to another healthcare provider.
If a new terminally ill patient comes under your care, you should ask about the existence of a MOLST/POLST form from the patient and/or the facility that is transferring the patient.
Review the Medical Orders for Life Sustaining Treatment on admission and ensure that the orders reflect the patient’s current wishes.
If the terminally ill patient does not have Medical Orders for Life Sustaining Treatment, you should offer them the opportunity to complete a form on admission to a nursing home, assisted living facility, home health agency, hospice program, kidney dialysis center, or hospital.
Document if a terminally ill patient does not file Medical Orders for Life Sustaining Treatment and explain the consequences of making no decision to the patient or their recognized healthcare decision maker. If there are no limitations on care, except as otherwise provided by law, cardiopulmonary resuscitation will be attempted and other treatments will be given. If a choice regarding cardiopulmonary resuscitation (CPR) is not made, cardiopulmonary resuscitation will be attempted using all available treatment options.
Void the Medical Orders for Life Sustaining Treatment if requested by your patient.
Follow the most recent version of the Medical Orders for Life Sustaining Treatment if more than one form is found in the medical records.
So how do the coastal states of Southern New England deal with this? Well, let’s check.
The Ocean State uses their version of the Medical Orders for Life Sustaining Treatment (MOLST) form. This form contains instructions to follow a terminally ill patient’s wishes regarding resuscitation, feeding tubes and other life-sustaining medical treatments. The MOLST form can be used to refuse or request treatments and are completely voluntary on the part of patients. These orders can supplement Do Not Resuscitate (DNR) instructions.
These forms should be printed on "hot pink" paper for easy recognition by medical providers. As in all cases, consistency of color helps in keeping time loss to a minimum when responding to an emergency for someone with a MOLST form.
The Connecticut MOLST is a voluntary adjunctive planning tool to an advance health care directive. MOLST orders are for patients who are at the end stage of a serious life limiting illness or in a condition of advanced chronic progressive frailty as determined by a physician or advance practice registered nurse. The MOLST form documents patients’ decisions in a clear manner that can be quickly understood by all providers, including first responders and emergency medical services (EMS) personnel.
Based upon the ethical principle of respect for patient autonomy and the legal principle of self-determination, A "CT medical order for life-sustaining treatment" is a written medical order by a physician, advanced practice registered nurse, or physician assistant that records a patient’s treatment preferences in writing on a bright green form approved by the Connecticut Department of Public Health.
The MOLST form is completed after a conversation or series of conversations have taken place between the patient (and if the patient chooses, their loved ones) and the patient’s health care provider or providers. The MOLST is an actionable medical order that reflects the patient’s goals of care for full medical treatment, limited medical treatment or comfort measures only. It is designed to enable patients to document their preferences for medical treatments as they near life’s end, and assists their loved ones and health care providers to better understand the patient’s wishes. The form identifies the patient’s medical condition as well as their treatment preferences and goals and accompanies the patient across all settings. The documentation makes it easier for health providers at one care setting to know the wishes of a patient previously documented in another care setting. Medical providers must go through the MOLST course and the MOLST form must be ordered from the state.
MOLST is a medical order form (similar to a prescription) that relays instructions between health professionals about a patient's care. MOLST is based on an individual's right to accept or refuse medical treatment, including treatments that might extend life. However, the MOLST is not for everyone.
In Massachusetts, patients with a serious advanced illness at any age may discuss filling out a MOLST form with their clinician. The patient's decision to use the MOLST form must be voluntary. Anyone with a MOLST form is also recommended to fill out a health care proxy form.
The process before filling out MOLST requires discussions between the signing clinician (physician, nurse practitioner or physician assistant), the patient, and family members/trusted advisors about:
The patient's current medical condition
What could happen next
The patient's values and goals for care and
Possible risks and benefits of treatments that may be offered.
After these discussions, the MOLST form may be filled out and signed by the clinician to instruct other health professionals about the use of life-sustaining treatments for the patient, based on the patient's own decisions. The patient signs the MOLST form as well. The signed MOLST form stays with the patient and is to be honored by health professionals in any clinical care situation.
I Changed My Mind
So after all this is done, can you change your mind even as the EMTs are reading the form on your refrigerator and closing up their oxygen and EKG cases? The answer is absolutely Yes. A person can ask for and receive needed medical treatment at any time, no matter what the MOLST form says. And, a person can also void the MOLST form and/or ask a physician, nurse practitioner or physician assistant to fill out a new form with different instructions at any time.
These orders should be considered the next step after advance directives. They are a way to take your wishes from your advance directive and set them down in an unambiguous and concrete manner which is easily understood and applicable when needed. Statistics do show that the use of these forms (no matter what they are called - POLST, MOLST, etc.) results in a high compliance from medical professionals.
From physicians to EMTs to hospice care workers, most healthcare professionals feel they are better guided in the patient’s end-of-life preferences when one of these forms are in place. And you are more likely to receive the end-of-life treatments you desire when you have one of these forms in place.
Now, there can be a minor drawback regarding the MOLST/POLST form. The medical requirements or language may change from time to time and being aware of this is important. Just like you should be reviewing your estate plan annually for any changes, these documents must also be reviewed to make sure that the most up to date form is in place.
So here's the bottom line, don't wait until it's too late to get these forms completed and in place. Talk to your medical provider and discuss whether having one of these forms is a good idea for you and follow through with the required procedure or providers will be unable to act upon it. Don't put yourself or a loved one through unnecessary suffering at a time when emotions are running high and decisions that are made could have less than ideal outcomes.
Don Drake oversees Connelly Law's Community Education Programming. He is a retired licensed clinician in the Commonwealth of Massachusetts with over three decades of experience working with older adults diagnosed with HIV/AIDS, substance abuse disorders, chronic homeless and mental illness. Prior to his retirement, he was the director of a unique treatment program for older adults with histories of mental illness, cognitive disabilities, and addiction at Shattuck Hospital in Boston. He was also a director at Steppingstone, Inc. in Fall River, Massachusetts where he was the clinical trainer, program and curriculum developer for the agency and oversaw treatment programming for older adults. He has over 40 years of human service and law enforcement experience and has worked as an administrator at programs in Boston, Hartford, Providence and Philadelphia, helping to structure, hire and train staff in providing behavioral and addictions treatments to adolescent and adult clients. Drake also worked as a trainer for the Massachusetts Department of Public Health presenting training on QPR, a suicide prevention curriculum for the general public, the Massachusetts Council for Problem Gambling and the Crisis Prevention Institute, an international training organization that specializes in the safe management of disruptive and assaultive behaviors. He is also a retired professional wrestler who is in the New England Professional Wrestling Hall of Fame. Drake can be reached at Connelly Law Offices, Ltd. at firstname.lastname@example.org