The Movement to Improve End-of-Life Health Care Planning
A nationwide movement has been underway since the late 1990s to improve end-of-life health care planning by individuals. While Advance Directives including Living Wills and Do-Not-Resuscitate Orders (DNRs) have been widely used to address future decisions regarding life support, pain relief and the administration of nutrition and fluids, they do not capture a patient’s preferred level of medical intervention for care either on a routine basis or on an urgent basis due to an acute medical condition. To give individuals the opportunity to express their medical treatment preferences, a process developed that begins with conversations between physicians and patients about available treatment options, and provides forms that record the patient’s preferences for all of the patient’s health care providers to see. Throughout the various States, these forms are known as physicians’ orders for life-sustaining treatment (POLST), medical orders for life-sustaining treatment (MOLST), physicians’ orders for scope of treatment (POST), and medical orders for scope of treatment (MOST). The National POLST Paradigm Task Force provides guidance for successful implementation of such forms.¹ In Maryland, we have the Maryland MOLST Training Task Force. The State provided regulations for the use of Maryland’s MOLST form in July 2013.²
Who Should Have a MOLST form?
Regulations require the MOLST forms to be completed at assisted living programs, home health agencies, hospices, kidney dialysis centers, and nursing homes for newly admitted patients and at hospitals for certain patients.
In addition, the rule of thumb is that any person for whom it would be true that a doctor would not be surprised if the person died within the year should have a MOLST form. Anyone of advanced age or frail health or both should have a MOLST, even those individuals who are not terminally ill, in a persistent vegetative state or suffering from an end-stage condition. Persons in these categories should have a conversation or a series of conversations regarding end-of-life care with a health care provider. Ideally, the conversations are a team effort by all involved in the person’s care and decision-making. End-of-life care is an evolving field. Understanding the nature and effects of treatments, procedures, medications, and methods, is important for every patient, and requires open and frank discussion.
1 The Center for Ethics in Health Care at Oregon Health & Science University first convened the task force. See OR. POLST TASK FORCE, GUIDANCE FOR OREGON’S HEALTH CARE PROFESSIONALS 6, 17 (2013), available at http://www.polst.org/wp-content/uploads/2013/ 12/2013.12.26-OR-Guidebook-2013.pdf 2 The Department of Health and Human Services regulations are found in COMAR 10.01.21
The Shortcomings of Advance Directives and DNRs
Most of us are familiar with a typical Advance Directive that includes a Living Will. Such a document allows an individual to specify whether or not to be administered life-sustaining treatment, as well as nutrition or fluids if the person has no expectation of recovery from a terminal condition, a persistent vegetative state, or an end-stage condition. The Advance Directive is executed with a hypothetical future health event and goes into effect in the future when the client is no longer capable of making health care decisions. At such time, the agent appointed in the directive has decision-making authority on the patient’s behalf.
Most of us are also familiar with Do-Not-Resuscitate (DNR) orders, which prevent resuscitation in the event of cardiopulmonary arrest. Such orders are issued by physicians for certain patients after a conversation with the patient or the patient’s decision-makers.
Neither the Advance Directive nor the DNR provides a client the opportunity to specify the kind and level of medical intervention, during or at the end of life, that reflect the client’s preferences, values, and goals. The choices are either for no intervention at all or full intervention. A MOLST allows the patient to clearly and accurately identify the desired level of care from among the available treatment options as they are explained to the patient or the patient’s health care decision-makers by a physician, physician’s assistant or nurse practitioner. The care-related decisions can be addressed separately from the choice regarding DNR orders. Thus, a person may not want to be resuscitated, but, in all other situations, the person may want more or less aggressive care. Since the patient may lose the capacity to participate in the conversations, it is still important to have an Advance Directive that appoints a health care agent, who can talk with the patient’s health care providers on behalf of the patient.
What Treatment Categories does the MOLST Cover?
The Maryland MOLST allows the patient to make informed choices regarding the administration of antibiotics, nutrition, fluids, ventilation, blood transfusion, hospital transfer, medical workup, and dialysis, in addition to cardiopulmonary resuscitation (CPR). As part of the conversation with medical staff regarding the treatment categories, the staff will summarize key facts and opinions about the patient’s medical situation and prognosis, and the relevance of various treatment options.³ The medical staff is expected to ensure that the patient’s choices are informed as a result of the consultation with the physician, physician’s assistant or nurse practitioner, who signs the order. Since a patient’s medical needs are likely to change over time, it is important to continue to have these conversations. The MOLST can be updated when the patient reverses an earlier decision based on changes in his or her medical condition.
What is the Purpose of the MOLST Worksheet?
An individual who is not currently facing an acute medical condition and has the capacity to discuss health care treatment options with a health care provider has the option of completing the MOLST Worksheet. The worksheet is part of the MOLST and allows a person to document treatment preferences for future situations. If and when the time comes that the person needs a MOLST, the worksheet provides valuable input for the completion of the MOLST form. The topics covered by the worksheet are the same as those addressed on the MOLST form. An individual may choose which of these topics to address. There is no requirement that all categories be worked on.
Minors with Terminal Illnesses and Individuals with Disabilities
Some states allow minors with terminal illnesses to have POLSTs, and some provide a section for special concerns of individuals with disabilities. The Maryland MOLST does not provide a section for individuals with disabilities.
MOLST Need to be Kept Where They Can Be Found – the Registry
Emergency Medical Technicians (EMTs) or first responders will respect and implement a patient’s wishes. They can only do so if they see the MOLST. A physician can provide guidance on where to keep the form; on the bedside table or room door, for the bed-ridden patient, on the refrigerator, in the purse, or any other place where it can be discovered before procedures are started that may go against the patient’s wishes.
Some states maintain a registry for their residents’ POLST or MOLST forms. The advantage of a registry is that EMTs and other providers have access to the forms. Maryland has such a registry.
³See Health Care Decision Guide for Health Care Professionals by the Maryland MOLST Training Task Force, May 2012.
A competent individual’s use of a MOLST, properly executed in accordance with local law, is protected by constitutional and common law. The Due Process Clause protects our deeply personal liberty to reject medical treatment. Since the form is completed after conversations with the physician, a patient’s informed consent, as well as the individual’s liberty and privacy concerns are satisfied. A health care provider’s refusal to honor a MOLST would implicate common law and constitutional violations at the least.
The US Supreme Court has been united in its view that a competent individual, absent a specific compelling public interest has a right to refuse medical treatment.
“On balance, the right to self-determination ordinarily outweighs any countervailing state interests, and competent persons generally are permitted to refuse medical treatment, even at the risk of death. Most of the cases that have held otherwise, unless they involved the interest in protecting innocent third parties, have concerned the patient’s competency to make a rational and considered choice.”4 This language is decisive for the constitutional validity and enforceability of a MOLST. It announces that each person has a fundamental liberty interest to control his or her medical care.
The MOLST Should Be Signed By the Patient
The Task Force recommends that the MOLST be signed by the patient to ensure that there was at least some communication about the form with the patient or the patient’s health care agent. Such a requirement would increase the confidence that the form reflects the patient’s informed decisions.
Patients who do not wish to have very expensive treatments, benefit from having a MOLST that is properly implemented.
MOLST has to be part of estate planning and elder law consultations
The Medical Orders for Life-Sustaining Treatment (MOLST) form and associated worksheet are part of a comprehensive estate planning consultation. Estate planning and elder law attorneys need to draw clients’ attention to the existence and function of this form.