In the media today, much emphasis has been placed on using “Advance Health Care Directives” to aid in making end-of-life decisions after a person is incapacitated. However, little is commonly known about the different types of advance directives available or the one type which will provide more practical aid for a person’s lifetime health care decisions, as well as in end-of-life situations. In this article, we will address the most common issues a person confronts when considering their or a loved one’s health care and end-of-life decision making process, including:
- Personal Right to Refuse Treatment and the Need for Advance Directives
- Determining the “Right” Advance Directive for Your Needs
- “Living Wills” and Why These May Not Be What You Expect
- Health Care Treatment Directives
- Drawbacks of Treatment Directives and Living Wills
- Durable Powers of Attorney for Health Care
- Federal Law Regarding advance Directives
- Conclusion
Personal Right to Refuse Treatment and the Need for Advance Directives
Anyone faced with a terminal or gravely debilitating medical condition is confronted with the most serious and deeply personal decisions they may ever make. When given no option other than being kept alive by artificial means of life-support that merely prolong the dying process, a person may choose to refuse treatment even if doing so would hasten their death. This also includes a person’s right to refuse artificially supplied nutrition and hydration, commonly referred to as “tube-feeding.” So long as a person can communicate their personal wishes through some means, the decisions concerning a person’s treatment remain matters between the patient involved and their doctor. However, significant controversy can and does arise when a person is “incapacitated” and unable to make or communicate their wishes concerning medical treatment without having prepared an advance directive that effectively addresses the controversial issues.
Courts all too often become involved in medical treatment situations, particularly if the treatment decision concerns whether to withhold or withdraw artificial life-support for the incapacitated patient. Cases can reach the courts if family members, state agencies, healthcare providers, or others, file claims concerning treatment issues. These often lengthy court battles result in the parties undergoing considerable emotional turmoil and incurring substantial legal and perhaps medical expenses to have the court decide what the patient would have wanted for their medical treatment, or what is in the patient’s “best interests.” This all occurs while the patient remains on artificial life-support.
Courts have long protected an incapacitated person’s right to have medical treatment withdrawn or withheld, in essence, protecting a person’s right to die without being maintained indefinitely on artificial life-support. The first most widely publicized case was decided by the New Jersey Supreme Court in 1976 regarding Karen Ann Quinlan. However, the first right-to-die decision by the United States Supreme Court was not until 1990, in the case of Cruzan by Cruzan v. Director of the Missouri Dept. of Health, which was also widely publicized.
Nancy Cruzan was a young woman who had been severely injured in an automobile accident and had deteriorated into a “persistent vegetative state,” meaning she had no higher-level brain functions at all. Five years after the near-fatal accident, Ms. Cruzan’s parents sought a court order requesting that all artificial means of life support be terminated for their daughter, while the State of Missouri intervened to argue that there was no right to die. The parents presented clear and convincing evidence showing that Nancy Cruzan would not have wanted to receive artificial hydration and nutrition, were she able to express her own wishes. The case was ultimately appealed to the United States Supreme Court, where it was decided that a person’s right to refuse medical treatment is a “fundamental liberty interest” protected under the U.S. Constitution.
Because of the Cruzan case, the law protects each person’s individual rights and preferences concerning their end-of-life care. The Cruzan case also unquestionably establishes each person’s right to express their preferences for end-of-life care in the form of “advance directives” – including living wills and other expressions of a person’s wishes.
When a person is incapacitated without the benefit of a proper advance directive, people have no guidance as to a person’s wishes for treatment and will likely need to resort to a court of law. These situations unfortunately occur in hospitals everyday, involving persons who have suffered a serious injury, or who have debilitating diseases such as Alzheimer’s or cancer.
There is a common misconception that if a person becomes disabled, their spouse or other close family members would have full authority to handle the affairs of the disabled spouse or family member without any written authorization. In fact, most health professionals have traditionally been likely to accept the signature of a spouse or other close family member of an incapacitated patient to authorize medical or surgical treatment, or even to withhold or withdraw certain medical treatment. However, the law is clear that family members, including a spouse, have no express legal authority in Missouri to make treatment decisions when a situation is brought before a court in the absence of proper legal authorization. Problems especially arise when there are no close family members available to authorize decisions, or if family members cannot agree on the manner to deal with the patient’s situation through traditional dealings with the patient’s doctor. Significant legal issues typically arise for courts to resolve if the patient leaves no advance directive in writing and where the issues involve end-of-life decisions, such as whether to withhold or withdraw tube feeding. These were the problems that were widely publicized most recently concerning the Florida case of Terri Schiavo.
With proper planning in place in the form of an appropriate advance directive, individuals can, in most cases, totally avoid the courts’ involvement associated with end-of-life decisions. Such planning requires a person to sign a proper “advance directive” which will maximize the probability that medical decisions made for an incapacitated person will reflect that person’s own values and wishes. The key is to sign the advance directive before serious illness or incapacity strikes.
Determining the “Right” Advance Directive for Your Needs
Since the Quinlan case of 1976, all fifty states and the District of Columbia have enacted laws concerning advance directives. However, there are various types of such written directives and the necessary provisions for each type vary from state to state. This is because the validity of any advance directive is governed by the laws that apply in the state where the incapacitated patient is being treated. As mentioned above, Missouri recognizes three general types of advance directives: (1) Living Wills; (2) Health Care Treatment Directives; and (3) Durable Powers of Attorney for Health Care. Each of these types have certain common characteristics, but there are also very important differences in the uses of each kind of advance directive, so that selecting the “right” one for a person’s situation requires careful thought. People who frequently travel to other states may also wish to see that their advance directives are prepared so they will comply with the laws of the other state(s) where they visit, to better assure that problems can be avoided if possible. The common characteristics that apply to most types of advance directives for health care are:
- Any directive must be made by a competent adult.
- It becomes effective when the person who created it becomes incapacitated and can no longer make or communicate their own healthcare treatment decisions.
- Each advance directive may be revoked or terminated at any time by the person who signed it.
The common uses, as well as the advantages and disadvantages inherent to each type of advance directive, are discussed below.
“Living Wills” and Why These May Not Be What You Expect
Most people tend to associate advance directives with a “Living Will,” and incorrectly anticipate that such a document will cover all of their end-of-life decision making needs. In fact, Living Wills in Missouri apply in only the most limited situations and become effective only when the declarant (the person who signed it) is terminally ill and where the treating doctor believes that the patient’s death is likely to occur within a short time, regardless whether medical procedures are applied or not. Even then, a Missouri Living Will does not permit nutrition or hydration to be withheld or withdrawn.
The Living Will format and uses are strictly governed by a special Missouri law. That law only allows for “death-prolonging procedures” to be withheld or withdrawn. In Missouri, tube-feeding is not considered as a “death-prolonging procedure,” and thus a Living Will does not authorize the termination of tube-feeding. A Living Will, however, does allow the patient to receive medical procedures that are necessary to provide comfort, care or alleviate pain.
Living Wills have various disadvantages and may even be ineffectual for all practical purposes. They are too vague to deal with most typical situations and they do not address all-to-frequent cases such as when a person is conscious, maybe only intermittently, or when death is not imminent. Persons who are in a persistently vegetative state are frequently able to survive for years through use of tube-feeding and other artificial life-support, as occurred in the cases involving Nancy Cruzan and more recently, Terri Schiavo. In many instances, differences in medical opinions arise as to whether death is imminent, or where both doctors and family are reluctant to acknowledge that death may be imminent.
In studies concerning the application of Living Wills, it was shown that the existence of a Living Will did not change the course of a patient’s treatment in a significant number of cases where it might have been useful, as compared to patients who had no Living Will or other advance directive.
Living Wills may have a limited place in end-of-life decision-making, but are more impractical than useful, while giving many a false sense of security. People should definitely not consider using them as their only advance directive and would do better to use more contemporary directives discussed below.
Health Care Treatment Directives
A Health Care Treatment Directive has some similarities to a Living Will, but also has significant differences that make it more preferable. The Treatment Directive is a legal document that allows a competent adult to indicate, in advance, their specific directions to their doctor and other healthcare providers concerning the person’s end-of-life treatment. These directives typically cover a range of specific treatments that a person might authorize their doctor to withhold or withdraw if there is no reasonable expectation of recovering from serious or terminal conditions. The Treatment Directive provides a strong statement of a person’s wishes concerning the use, or non-use of life-prolonging procedures when a person has lost the ability to make or communicate a medical treatment decision. Unlike the Living Will, the Treatment Directive may even direct that tube-feeding be withheld or withdrawn in specified circumstances, and may even provide for the donation of bodily organs. Use of Treatment Directives are allowed in Missouri where they provide clear and convincing evidence as to a person’s intent regarding their end-of-life medical treatment.
There is no particular legal format which the Treatment Directive must follow and many forms are available, for better or worse. In Missouri, the Treatment Directive does not even need to be signed by witnesses or notarized to be effective, although such procedures are recommended to strengthen the evidence as to a person’s intent and to increase the likelihood that it will be honored in other states. These directives would apply in cases where a person is trapped in a persistent vegetative state, with no hope of recovery, a situation where a Living Will would not be effective.
Drawbacks of Treatment Directives and Living Wills
Even where a Treatment Directive or Living Will is in place, it remains the responsibility of the person who signed it to notify their family, doctor or other health care provider that it exists and to make the document available. Often they are not used – either because no one knows they exist or because they cannot be found when needed. But even when available, these documents only provide instructions for end-of-life situations; they do not appoint anyone to serve as a decision-maker to guide the manner in which these documents are to be applied. Therefore, neither the Treatment Directive, nor the Living Will if used alone may be “best” choice of an advance directive.
Durable Powers of Attorney for Health Care
The Durable Power of Attorney for Health Care (“DPOAHC”), sometimes called a “Health Care Proxy,” has been adopted by Missouri and in every state in some form. The DPOAHC is the most comprehensive and flexible legal instrument presently available. Essentially, the DPOAHC is a legal document that designates the person(s) who can make every type of health care decision for you if you cannot make them yourself, including whether and when to withhold or withdraw nutrition and/or hydration (tube-feeding). Through a DPOAHC, you may also designate alternate persons who can make healthcare decisions for you if the first person you designated is not available for any reason. The persons you designate with such decision making authority are referred to as your health care “agents” or “surrogates” and should be carefully selected.
Use of a proper DPOAHC affords maximum flexibility for you concerning health care treatment since the agent can make decisions, regardless of whether you are permanently or only temporarily incapacitated and unable to act for yourself. However, Missouri law directs that a DPOAHC must satisfy specific legal requirements, including the use of certain language, and it must be properly executed and acknowledged in order to be effective. The DPOAHC should also ensure that the agent will have access to obtain your confidential medical information and records from doctors and other healthcare providers, so as to comply with the requirements of the federal law known as the Health Insurance Portability and Accountability Act of 1996 (“HIPAA”). This will enable the agent to have the information necessary to make the best decisions as to your care.
A Missouri DPOAHC may include a variety of important provisions to satisfy a person’s wishes for health care and even other issues, so long as the necessary legal requirements are met. Therefore, it is strongly recommended that a person consult with a qualified attorney before executing a DPOAHC and to assure the document is properly executed so it will be valid in Missouri.
At the time a DPOAHC is executed, it is often coupled with the Health Care Treatment Directive discussed above. By using both the DPOAHC and Treatment Directive, a person might be afforded the maximum amount of personal control and flexibility in medical treatment decisions if they become incapacitated. However, to determine whether you may need both a DPOAHC and a Treatment Directive, it is again best to consult with a qualified attorney before executing such documents.
Federal Law Regarding Advance Directives
Under the federal law known as the Patient Self-Determination Act (“PSDA”), most hospitals and long-term care facilities are required to document whether the patient has an advance directive. In addition, they must furnish each patient, upon admission, with written information about their legal rights concerning informed consent and health care decision-making. This usually takes the form of a “patients’ bill of rights” or other educational brochure, which is given to a person when first admitted. These are meant to provide you with information about your options regarding decisions you may make about your medical care. The information includes your right to accept or refuse medical treatment and their right to make advance directives.
Instances have arisen where perhaps well-intentioned staff at health care facilities have sought to require a person to sign or provide an advance directive as a condition for treatment or admission to their facility. You should know it is illegal for any health care provider, employee of a health care facility, or even an insurance company or HMO, to require anyone to sign an advance directive of any kind as a condition for receiving any treatment or services at a facility or insurance benefits for health care services.
The PSDA was enacted with the main goal of providing information to patients about their rights concerning advance directives. When one is being admitted to a hospital, it is probably not the best time to discuss advance directives and end-of-life matters. Instead, consider and complete your advance directive long before you need to report to the hospital and then take a copy along to provide to the hospital staff. In addition, make sure your family has copies of your advance directives. Your spouse, children or other close family or friends who will likely be with you at or shortly after admission may each be given copies of your advance directive so that your wishes are clearly known.
Remember, you do not need to use the form the hospital or nursing home gives you, especially where you already have your own advance directives available. The forms hospitals provide are typically limited to treatment directives, which may not reflect your personal values and wishes.
Conclusion
When possible, one should consider the various alternatives available for advance directives, particularly the Durable Power of Attorney for Health Care, and seek qualified legal assistance while you are most able to calmly and objectively consider the significance of the options presented. Executing important legal documents before an illness strikes will enable you to best determine your personal views and wishes about end-of-life and treatment decisions without undue outside pressure.
Advance planning better assures that your end-of-life wishes can be honored and will also be appreciated by your loved ones. Also discuss your treatment wishes with your family, your doctor, and particularly the persons you have designated as your health care agents. Taking proper steps in advance will serve you well to avoid the potential need for a court becoming involved, such as in the Terri Schiavo case.