Express Yourself: The Opportunity To Control Your Health Care
by: Dana E. Bookbinder
Because the attempt to mold religious tenets into legal systems continues to cause serious conflict even as we head into the twenty-first century, it is an especially rare opportunity when we can express our personal religious and ethical beliefs and have our own words and thoughts assume the authority of law. One such opportunity granted by our state and federal legislatures is the Advance Health Care Directive, often in the form of a Living Will.
Through an Advance Directive, individuals execute a written declaration to a physician, hospital, nursing home or other health care provider as to how their medical treatment should be conducted in the event of mental incapacity or terminal illness. Given the variety of ethical and religious approaches to such personal issues, it is surprising that many individuals still utilize pre-printed, vague forms as their Living Wills and even more surprising that many individuals have not executed them.
Through specific and properly drafted documents, individuals no longer able to communicate can speak out on issues at the core of their religious or ethical beliefs and ensure their instructions will be followed — or, they can appoint a trusted family member or friend to take charge of their health care decisions in the event they can no longer do so.
Our state legislatures have enumerated a number of rights that have been upheld in courts around the country. Some of these rights are:
- The right to refuse or consent to medical treatment
- The right to understandable information about the risks and benefits of proffered medical interventions
- The right to decide how much medical care should be administered to you, regardless of what your physician and/or family members think best.
- The right to have your wishes respected even if you have lost capacity.
In addition to exercising one’s rights, an Advance Directive can give family members the comfort of knowing they are carrying out their loved one’s wishes; it allows individuals to maintain control of their health care and to specifically communicate decisions to their physicians; and it allows families to avoid unpleasant court battles over maintaining or withdrawing life support.
Depending on an individual’s wishes, an Advance Directive does not necessarily order the withdrawal of life-sustaining treatment; it merely preserves the right of an individual to make such a decision. An Advance Directive may be in the form of a Living Will, Health Care Proxy, Health Care Power of Attorney, or a combination of them. If a mentally competent individual who has executed an Advance Directive changes his preference as to whether to receive life support treatment, the document can be revoked and a new document executed. Additionally, regardless of the instructions contained in an Advance Directive, comfort measures will not be withheld.
1. Living Will – A Living Will typically expresses an individual’s wish not to be kept alive by life-sustaining medical procedures when there is no reasonable expectation of recovery. However, it can also be drafted to direct the opposite – that aggressive treatment must be provided in all situations. Under New Jersey state law, life sustaining treatment, which is defined to include artificially provided fluids and nutrition, generally may only be removed when the patient is permanently unconscious; the patient’s condition is terminal; or if the treatment is experimental and likely to be ineffective.
2. Health Care Proxy – A Health Care Proxy document appoints an agent for the individual, usually a family member or close friend, to voice the individual’s health care preferences to medical practitioners in the event the individual is unable to communicate such desires himself. Again, the set of instructions may establish a preference for withdrawing life-sustaining treatment or it may affirm that aggressive medical treatment be given in all circumstances. A statement made by the patient to a health care agent will usually override a contradictory instruction in the Advance Directive.
3. Health Care Power of Attorney – A Health Care Power of Attorney is the most flexible and neutral of the Advance Directive formats. It merely appoints a health care agent for the individual to act on that individual’s behalf if the individual loses decision making capacity. It contains a list of powers to be exercised by the agent in acting for the individual but does not voice any preferences as to how the individual’s medical treatment should be handled.
More flexible than the Living Will, the Health Care Power of Attorney plans for a decision making process that should ultimately lead to informed consent to a specific medical treatment or a refusal. The appointed agent, who may be a friend, companion, family member, spouse, etc., can make decisions in consultation with medical professionals and can interpret the patient’s wishes as circumstances change. Of course, it is strongly urged that patients discuss their preferences with their appointed agents, but they are under no specific requirement to give instructions to their agents.
If the individual executing a Health Care Power of Attorney chooses to, he or she may specify continued or discontinued treatment in certain situations or for certain medical conditions. Again, to ensure that resuscitating treatment would never be withheld prematurely, the instructions should be specific.
Although individuals typically focus on the results of medical treatments rather than the treatment techniques themselves, it is helpful to provide instructions on specific treatments, such as nutrition and hydration and treatments aiming to relieve pain.
The list of powers to be exercised by an appointed health care agent through an Advance Directive should be drafted in such a way as to prevent unwanted intrusions and medical decisions imposed by strangers; costly medical care that offers little or no real benefit; the denial of a comfortable, dignified death; and the failure to receive needed care. The powers should also include, at a minimum, the power to arrange for admission to, and discharge from facilities, to employ and discharge health care providers, to grant releases to medical personnel and others, and to institute legal actions to enforce the patient’s intentions, if any had been expressed in the Health Care Power of Attorney.
If desired, an agent’s powers may also be specifically limited by the terms of the Health Care Power of Attorney and the agent may be required to consult with another individual before acting on the patient’s behalf.
Even if a health care decision must be made and the appointed health care agent is unavailable, instructions included within the Health Care Power of Attorney may still serve as evidence of the patient’s desires.
Despite the plethora of vague forms distributed for signing by hospitals or sold in stationery stores, it is important to avoid imprecise language such as death with dignity, quality of life, heroic, and extraordinary, since, at best, these terms invite differing interpretations as to the administration of medical care, and at worst, they may render the instructions contained within the Advance Directive completely ineffective.
Since the agent will only be called upon to act if the patient is incapacitated, a Health Care Power of Attorney should define incapacity. It also must define the circumstances in which the agent is authorized to exercise specific powers granted by the document, including the authority to have life-sustaining treatment withdrawn in dire situations if the patient so wishes.
Patients who already have a known illness should have Advance Directives prepared sensitive to their conditions. For instance, whether a patient wants ventilator support should be addressed with certain conditions affecting respiration.
Patients may also consider adding a provision that the financial cost of his or her medical treatment should be taken into account and weighed against the likelihood of treatment success. Rather than vaguely alluding to a certain quality of life, patients can specify they want medical treatment to continue if, for example, with the treatment, they would be able to at least understand what others say and respond to them by giving some signal or leave the hospital and live unattached to medical machinery.
Individual Rights vs. the State’s Interest
Without an Advance Directive, the individual must impose upon a judge or other government official to wade through the default provisions entrenched in the law and make intensely personal decisions for that individual. Generally, the right to refuse life-sustaining treatment is grounded in the principles that individuals have the right to control their own fates and that the provision of unwanted medical treatment can be tantamount to a breach of duty owed by a physician/health care provider to a patient or the commission of a civil wrong, including a battery, on a patient by a physician.
However, the law has also traditionally acted to preserve life – states not only enforce laws against homicide but also enact laws to punish those who aid and abet suicide. As stated by the New Jersey Supreme Court in 1985, It is best to err, if at all, in favor of preserving life. In re Conroy, 486 A.2d 1209, 1233 (N.J. 1985).
The U.S. Supreme Court labored over these competing interests in Cruzan v. Director, Missouri Department of Health, 110 S. Ct. 2841 (1990), in which it articulated that individuals have a liberty interest established under the Fourteenth Amendment of the United States Constitution to forego medical treatment. However, the same ruling held that states may assert an unqualified interest in the preservation of human life. Cruzan, 110 S.Ct. at 2853. The Court also ruled that in deciding how to balance the preservation of life against an individual’s liberty interest to control his or her medical care, states do not have to consider the quality of that individual’s life. In addition, states are free to impose any procedural burdens upon individuals wishing to forego life-sustaining treatment. Cruzan, 110 S.Ct. at 2854.
As decided by the Cruzan case, without an Advance Directive, the application to have life-sustaining treatment withdrawn must be formally made to the patient’s state of residence. If the matter must be brought before a state court, not only is the time and expense involved much greater than if the individual himself or herself had executed a Living Will, or Advance Directive, but the applicants are faced with the highest burden of proof imposed upon plaintiffs in civil actions – they must demonstrate they are entitled to the relief by clear and convincing evidence. However, in issuing their rulings, courts will accept evidence of what the patient’s preferences for health care decisions might have been. The case, In re Conroy, 98 N.J. 321 (1985) also established that the New Jersey State Office of the Ombudsman for the Institutionalized Elderly shall participate in the health care decision making for residents who have not executed living wills.
Although Congress enacted the Patient Self Determination Act of 1990, 42 U.S.C. ‘ 1395cc(f); 42 U.S.C. ‘ 1396a(w), it did not take a substantive position on the right to forego medical treatment and left that ultimate determination with the states themselves. The Act was designed primarily to require health care providers and institutions to inquire whether their patients had Advance Directives and to inform patients about their rights to execute such documents and to otherwise control their health care decisions as permitted under their states’ laws.
In 1992, New Jersey’s Advance Directives for Health Care Act, N.J.S.A. ‘ 26:2H-53, went into effect. As provided under federal law, the Act requires all health care institutions to inquire as to whether their patients (over age 18) have Advance Directive and if not, the institutions must inform their patients of their right to execute an Advance Directive. Under the Act, Advance Directives become operative when delivered to a patient’s attending physician or the health care institution and when the patient is determined to lack capacity to make a particular health care decision. An attending physician’s determination that a patient lacks decision making capacity must be confirmed by another physician unless the physician and health care representative agree that the lack of capacity is clearly apparent and requires no confirmation.
The Act also permits individuals to revoke their Advance Directives by oral or written notification or by execution of a subsequent Directive. Also, if an incapacitated patient expresses the wish that life sustaining treatment be continued, the physician must comply with this instruction despite any conflicting statement in his or her Advance Directive.