DMR POLICY #: 99-9 (Replaces Policy #96-2)
DATE ISSUED: April 1, 1999
EFFECTIVE DATE: April 1, 1999

Life Sustaining Treatment is any treatment choice having some reasonable expectation of effecting a permanent or temporary cure or remission of the illness or condition being treated.

I. Policy Statement

The Department of Mental Retardation strongly supports the right of individuals with mental retardation to obtain, refuse, or discontinue life sustaining treatment.
This policy sets forth the principles to guide the actions of those providing support and care to individuals with mental retardation who face life sustaining treatment decisions. By assisting the Department and provider staff, as well as guardians, families, and advocates, in understanding the relevant medical, ethical and legal issues involved in life sustaining treatment decisions, they can be made more aware of the increased risks individuals with mental retardation continue to face and be especially vigilant to protect their autonomy and their right to treatment.
There is no ethical obligation to provide life sustaining treatment when its use is not consistent with the goals of care for the individual or when there is a determination that the benefits of treatment no longer outweigh the burdens.

II. Scope of Policy

This policy applies to the Department of Mental Retardation ("the Department") and all providers licensed or operated by the Department as defined in its regulation at 115 CMR 1.01.

III. Definition of Terms:

A. Categories of Medical Interventions to Which this Policy Applies:

Antibiotics and Other Life Sustaining Medications. Medication provided to overcome infections that would otherwise be serious and potentially life threatening.
Long Term Life Supporting Technology. Technology used to sustain essential bodily functions on a long term basis. Examples include ventilators, dialysis, pacemakers, implanted defibrillators and transplantation.
Medical Procedures for Supplying Nutrition and Hydration. A feeding tube placed through the nose or the abdomen and intravenous nutrition supplied intravenously.
Palliative Care and Relief of Pain. Medical, surgical and other procedures that are used to relieve suffering, discomfort and dysfunction.

B. Medical and Legal Terms

Adult: An individual who is 18 years old or older.
Cardiopulmonary Resuscitation ("CPR") includes cardiac compression, artificial ventilation, oropharyngeal airway ("OPA") insertion, advanced airway management such as endotracheal intubation, cardiac resuscitation drugs, defibrillation and related procedures.
Competence: The mental capacity to make a particular decision or perform a particular act. There is a legal presumption that all individuals 18 years of age or older are competent to make decisions about their own personal and financial matters unless they have been found by a court of law to be incompetent to make certain decisions (or all decisions).
Do Not Resuscitate Orders ( "DNR"): A medical order written by a physician with the informed consent of a competent individual or if an individual is not competent, their duly authorized health care agent, or their guardian. The order is placed in an individual's medical record and indicates an intent to withhold cardiopulmonary resuscitation (CPR) if the individual experiences a respiratory or cardiac arrest. The Department of Public Health has established guidelines for appropriate emergency responses to individuals with DNR orders.
Health Care Proxy: A written document by which a competent adult (the "principal") designates another adult(s) as his/her "health care agent." The health care agent is authorized to make health care decisions on behalf of the principal to the extent set forth in the proxy document in the event the principal becomes unable to make such a decision him or herself.
An individual under guardianship may not execute a health care proxy. A guardian may not execute a health care proxy on behalf of their ward.
Informed Consent: The type of agreement between an individual, guardian or health care agent, and doctor that is required before treatment can be administered. To be informed consent, it must be a) from a legally and functionally competent individual; b) who has all the material facts about the proposed treatment including expected benefits and possible risks, their general probabilities and possible alternatives to the proposed treatment; and c) voluntary and given freely without coercion or undue influence.
Substituted Judgment: The process used by the probate court to make certain decisions on behalf of an individual who is not capable of making an informed decision and/or when a guardian or health care agent is not legally authorized to make such a decision. The court tries to put itself into the shoes of the individual and make the decisions the individual would make if he or she were competent. A health care agent may make all health care decisions if authorized by the proxy document.

Typically, a court will consider the following factors to arrive at a determination of what an individual would choose:

1. the individual's expressed preference (if any);
2. the existence of the individual's religious convictions, if any, and their relation to acceptance or refusal of treatment;
3. the impact on the family insofar as this factor would affect the individual's choice;
4. the probability of adverse side effects; and
5. the prognosis both with and without treatment.

These factors help the court to determine what the individual would want if he or she were competent. However, the court also considers other factors in reaching a final decision. These include: the State's interest in the preservation of life and the prevention of suicide (duty to prolong life); the protection of the interests of innocent third parties; and the integrity of the medical profession (i.e., professional ethics and sound medical practice).

Withholding or withdrawing of treatment: The decision to stop a treatment already underway is called "withdrawing treatment." The decision not to start a treatment is called "withholding treatment." There is no legal distinction between withholding and withdrawing treatment.

IV. Principles

The principles set forth below must be applied whenever life sustaining treatment is under consideration for an individual with mental retardation who is in the care of the Department or providers subject to this Policy:

A. Same Rights With Respect to Life Sustaining Treatment

Persons with mental retardation have the same rights as persons without a disability to be offered life sustaining treatment and to decide whether to accept, refuse, or terminate life sustaining treatment.

It is a denial of basic human rights to withhold life sustaining treatment from an individual with mental retardation if such treatment would be offered as a matter of sound medical practice to an individual without a disability who has the same or similar diagnosis. At the same time, there should be no presumption that a person with mental retardation must always be subjected to treatment which others may decline.

The decision to offer life sustaining medical treatment should be made without regard to the individual's cognitive ability or to subjective ideas of the individual's quality of life and perception of the individual's social worth.

B. Informed Choice

Life sustaining treatment decisions must be shown to be based on the criteria of informed choice, avoidance of harm and benefit to the individual of the proposed treatment. A determination must be made as to whether the individual with mental retardation is capable of making an informed life sustaining treatment decision. Lack of guardianship is not dispositive of the individual's capacity to make that particular decision.

C. Individual Autonomy

The autonomy of the individual with mental retardation to be the decision maker in his/her life must be respected. Each individual should receive information, guidance and support to facilitate the understanding of available options, including treatment options and their likely outcomes. Each individual's beliefs, including religious convictions, should be respected.

One approach to decision-making regarding life sustaining treatment for individuals not under guardianship would be to offer them the opportunity to consider and specify their preferences by executing a health care proxy in the event they later become unable to make an informed choice. Another approach may be to seek court authorization for individuals who are not capable of making an informed choice where circumstances suggest that conflicting interests exist, or there is no family involvement.

For individuals under guardianship, a court applying the substituted judgment doctrine would identify the choice the incompetent person would make if that person were competent.

Safeguards should be used to assure that life sustaining treatment decisions are made knowingly, voluntarily and without duress, coercion or manipulation.

D. Goals of Care:

A determination to redirect the goals of care from cure to comfort may be made when the benefits of continued attempts to achieve a cure or prolong life , from an individual's perspective, no longer exceed the burdens imposed by those attempts. Generally, redirection of the goals of care arise in the context of a terminal condition, although there may be appropriate cases involving individuals with progressive illnesses.

E. Support of Loved Ones

Family members involved with the individual should be included in the decision-making process unless an individual specifically rejects their involvement. In the absence of an involved family, the support of a good friend, trusted caregiver or citizen advocate should be sought. Individuals should not face the life sustaining treatment decision making process alone.

F. Dignity and Comfort

When the goals of care have changed from a focus on cure to a focus on comfort, the use of palliative or comfort care measures must always be considered. To preserve the dignity and comfort of an individual, treatment for relief of pain will be given even if treatment for the underlying condition is to be withheld or withdrawn. It should be anticipated that there may be disagreement about what interventions define comfort for a given individual. Consultation with the ethics committee may be warranted if there is disagreement among the team members.

G. Use of Hospice Care

Hospice care as a "choice" should be considered. Hospice care emphasizes comfort measures and counseling to provide social, spiritual and physical support to the dying patient, his/her family, and surrogate caregivers. The diagnosis of a terminal condition resulting in death within six (6) months remains the major criterion by which a patient is offered hospice care. Hospice services may be provided in the home as well as in long- term care facilities.

H. Use of Ethics Committees

When a health care dilemma arises, the use of an ethics committee consult should be pursued to ensure that the human rights and dignity of the individual have been fully considered.

An ethics consult will help define the presenting issues and help resolve dilemmas that arise in medical practice, health care and research, utilizing certain underlying principles which inform ethical decision making. With regard to life sustaining treatment decisions an ethics consult is a safeguard to assure that an individual's right to informed consent and their right to accept or refuse treatment is honored. For individuals who are unable to express their wishes, a consistent process can help assure that treatment decisions reflect the individual's wishes, even if they are unable to articulate a choice.

V. Guidelines for Application of the Policy

Decisions regarding life sustaining treatment for individuals with mental retardation require a coordinated and multidisciplinary review to ensure that the interests of the individuals and their families are respected, the medical and ethical factors are considered, and the legal requirements are met.

In general, discussion about the appropriate use of medical interventions and life sustaining treatment should be an on-going process that weighs the benefits and burdens of the proposed treatment in the context of the individual's overall progress, or is guided by the goals of care established for the individual. The guidelines below are not intended to substitute for a process where the individual, the family or guardian, as applicable, the physicians, nursing staff, legal counsel, and support staff (e.g. service coordinators, social workers, direct care staff, provider staff), are involved in deciding the course of action when a life sustaining treatment decision for a particular individual is under consideration.

When consensus about the appropriate use of medical interventions and life sustaining treatment cannot be reached, then the Department's Office of the General Counsel will decide whether court intervention should be sought.

A. Antibiotics and Other Life Sustaining Medications

There exists an expectation that antibiotics and other life sustaining medications will be provided to all individuals with infections in situations where cure or remission of an underlying condition is the goal of treatment.

There are times when it is legally and ethically justified not to treat an individual with antibiotics if, even with treatment with antibiotics, the individual's life expectancy would be limited.

B. Long Term Life Supporting Technology

There exists an expectation in favor of providing individuals in need of such care with life supporting technology, if this treatment has some reasonable expectation of effecting a cure or remission of the illness being treated.

There are times when the burdens of a treatment for an individual far outweigh its proposed benefits to the individual and are not compatible with the goals of care. In these situations, the benefits of the intervention must be weighed against the significant burdens imposed by the treatment on the individual.

C. Withholding or Withdrawing Nutrition and Hydration

There exists an expectation that favors an individual receiving nutrition and hydration through traditional and artificial means.
There is no legal presumption that such treatment must be provided. Individual exceptions may exist in which withholding or withdrawing nutrition and hydration delivered through artificial means may be justified. They include situations where consent is given by the individual or health care agent, or there has been court authorization.

D. Review of Order to Withhold or Withdraw Treatment

If the condition that prompted the order to withhold or withdraw treatment reverses itself, the order must be immediately withdrawn.
If consent is withdrawn, the order must be immediately be withdrawn.

E. Do Not Resuscitate Orders

A legally and functionally competent individual may consent to a DNR order. Where the individual is not capable of giving informed consent, a DNR order is appropriate only under one or more of the following specific circumstances and after the guardian, health care agent or involved family (if any) has been consulted and agrees to assigning DNR status:

  1. the individual has a terminal illness (death is the expected outcome of the disease process, there is no known cure and death is expected within 1 year).
  2. the individual has been diagnosed as being in a persistent vegetative state.
  3. the individual's current condition is such that CPR would cause more harm than good to the individual and substantially compromise his or her well-being.

A DNR order does not mean the withholding of other treatments such as treatment for relief of pain. The DNR order is only one component of defining the appropriate intensity of care, consistent with the goals of care.

Where the individual is in an out-of-hospital setting, the Department of Public Health's Comfort Care/DNR Order Verification Protocol is to be followed. This protocol provides a standardized mechanism for the verification of DNR order to ensure that individuals with valid DNR Order verification form or bracelet do not get resuscitated in the event of cardiac or respiratory arrest but do receive palliative/comfort measures.

This DPH protocol applies to all emergency medical services personnel (Basic, Intermediate and Paramedic EMTs and First Responders) operating in out-of-hospital settings. Comfort Care/DNR verification forms are available through primary care or attending physicians. A copy of the DPH protocol is attached.
DNR orders, including DNR orders for individuals with mental retardation in nursing facilities, are to be reviewed at least once a year. However, it is recognized that circumstances may exist where exceptions to this frequency may be discussed on their own merit with involved family.

This information is provided by the Department of Developmental Services.