Advance Directiive

Advance Directive

An advance directive is made up of two elements: a durable power of attorney for heath care and a living will. Twenty states wrap these two elements into a single comprehensive form, which is preferable (Last Acts, 2002). However, you should determine which forms can be used in your state and whether witness or notary signatures are required. A third element that may be necessary is called a do not resuscitate (DNR) order. It alerts emergency medical staff that a patient does not wish to be resuscitated. If a senior does not wish to be resuscitated, this fact should be listed on his or her living will. The patient’s physician will need the complete DNR and file it with the senior’s chart. Each of these elements is discussed in more detail below.

Advance Directives May be Oral or Written

The most common and most basic form of an advance directive is the oral communications between a patient and physician or between a patient and family members and friends. Such communications are fundamental to end-of-life planning, because a patient can begin to articulate his or her thoughts about “values, priorities, meaning, and [the] quality of life” (ABA Commission on Law and Aging, 2004). Doctors removed Nancy Cruzan’s feeding tube after two former colleagues testified in court about comments she made about not wanting to be kept alive as a vegetable. However, testimony regarding such discussions cannot always be relied upon, as they may not meet the clear and convincing evidentiary requirements of some state laws. (Clear and convincingis a legal standard of proof that is “less than what is necessary in criminal cases but more than what is normally required in civil proceedings” [Gifis, 1996]). In some states a written, signed, and witnessed document is required. Further, the recent Terri Schiavo case in Florida has raised additional questions about the validity of oral statements, particularly when there is a family dispute.

In 1990, 26-year-old Terri Schiavo suffered a cardiac arrest that starved her brain of oxygen. Like Nancy Cruzan, doctors diagnosed her condition as a persistent vegetative state. Before her illness, she signed no advance directive, so under Florida law her husband became the default surrogateas the next of kin. For eight years, according to her husband, he pursed different experimental and rehabilitative treatments, but Terri Schiavo never improved. In 1998, he petitioned the courts to remove her feeding tube, testifying, along with other relatives, that Terri Schiavo had disclosed as desire to not live in a coma hooked up to life support. Schiavo’s parents objected, countering that they too had a right to act as proxies for their daughter’s health, and sued to continue her artificial nutrition and hydration. For six years, this dispute was tied up in Florida’s legal system and eventually attracted the attention of national new programs. Her parents maintained that Terri Schiavo was not in a vegetative state but was in fact, responsive. When the Court of Appeals ruled in the husband’s favor, the feeding tube was removed for a few days. But in an emotional response, the state legislature passed what politicians and the media dubbed Terri’s Law, requiring the reinsertion of the feeding tube for this patient who had not signed an advance directive.

Once the legislature approved the law, Florida’s governor, Jeb Bush, ordered her feeding tube to be reinserted. However, the Florida Supreme Court later ruled that law was unconstitutional interference in the judicial system. Schiavo’s feeding tube was removed a third and final time and she died 13 days later on March 31, 2005. The pathologic findings of the autopsy report were all consistent with someone in a permanent vegetative state. The possible long-term implications of the Schiavo case are that testimony regarding a patient’s wishes may no longer be considered valid. A signed document may be required.

Durable Power of Attorney for Health Care

A power of attorney is a legal document naming an agent, called a proxy or surrogate, to be a substitute decision-maker when a patient is incompetent. To be valid, the proxy or surrogate must meet the state’s legal requirements, such as being 18 years of age. Also, the form may need to be witnessed and possibly notarized. The required number and type of signatures vary from state to state. A proxy can be a spouse, adult child, friend, or relative but should live nearby. Most important, this person should know the patient’s values and religious beliefs, wishes, and preferences regarding medical treatments, organ donation, nursing home placement, etc., and be willing to speak on behalf of the patient. The proxy must also separate his or her personal views from those of the patient. The power of attorney is revoked, however, the patient must notify not only the agent, but also the physicians, family members, and other persons who may be involved in providing care.

There is a consensus forming that, if people are only gong to complete one advance directive, they are best served by appointing a durable power of attorney for health care. If seniors want, they can supplement this with a written health care directive that spells out what interventions they prefer to receive or avoid, and with a living will that states what type of care they want if they are considered terminally ill. Personalized instructions ensure that even if the person name a surrogate is unavailable or unable to carry out the role, the health care team has guidelines and legal documents that will still hold up.

One or all of these documents may be helpful to the proxy decision-maker, but in no way should any of them replace discussions between the patient and the proxy. Paperwork alone is only pt of the process of end-of-life planning, and there are many obstacles to the use of health care directives and living wills in specific decision-making circumstances. The health care directive or living will paperwork is by no means a panacea, but can be a helpful part of decision making, especially for people with multiple advanced chronic conditions that will eventually affect the process of dying. These documents are very important in nursing homes. The documents should be part of the ongoing process of advance care planning.

Naming a Proxy

Naming a proxy is probably the most important task a patient performs when completing an advance directive. Seniors, or their advisors, cannot draft a living will to address every possible medical treatment. If a senior becomes incapacitated, it will be the decision of the proxy (called substituted judgment) that matters, or what other authorities determine is in the best interests of the patient. Research findings indicate that proxies often lack experience in end-of-life issues and have not always accurately represented the patient’s desires, substituting their own values instead (Sabatino, 1999), it is essential that the patient fully communicate with the proxy long before any possible emergency. In additional to naming a proxy, the senior should also designate an alternative proxy or proxies in the event that the primary surrogate is unavailable. In the rare instance when a trustworthy health care proxy cannot be found, it is best not to sign a durable power of attorney for health care.

Role and Responsibilities of a Proxy

In Maryland, state law spells out the role and responsibilities of a proxy. This statute (Maryland Code Annotated, 1998) provides useful guidelines that every surrogate should consider:

In determining the wishes of the patient, a surrogate shall consider the patient’s:

    • Current diagnosis and prognosis with and without the treatment at issue
    • Expressed preferences regarding the provisions of, or the withhold of, the specific treatment at issue of similar treatments
    • Relevant religious and moral beliefs and personal values
    • Behavior, attitudes, and past conduct with respect to the treatment generally
    • Reactions to the provision of, or the withholding or withdrawal of, a similar treatment for another individual
    • Expressed concerns about the effect on the family or intimate friends of the patient if a treatment were provided, withheld, or withdrawn.

Living Will

A living will is distinct from an advance directive in that living wills are generally invoked when a person is considered terminal, while a health care directive is not limited to the terminal state.

A living will outlines the type of care a patient would want or would reject in the terminal stage. It can guide both the proxy and health care workers as to the medical treatments provided during that time. Generally, a living will works best when it uses specific terminology such as do resuscitate or do not incubate. Generic phrases such as no heroic measuresare simply too vague to provide guidance (Sabatino, 1999).

You should be aware that one drawback of a living will is that it is not always clear at what point a person with advanced chronic conditions could be or should be considered terminal. Many serious and disabling events, such as stroke, Alzheimer’s disease, and coma or “persistent vegetative state,” are not considered terminal diseases by many doctors and may not be covered by living wills. Many living wills are never invoked because the person is never formally considered terminal.

Palliative Care

Instead of a cure, medical treatment can be focused on palliative care, sometimes called comfort care, to preserve the best quality of life by relieving pain, controlling symptoms, and supporting the patient’s continuing involvement with life. At the same time, palliative care regards dying as a natural part of life and supports the patient and family in living through this process. The psychological, emotional, and spiritual work involved in the dying process required energy that can be eroded by severe pain, persistent nausea, or unrelenting shortness of breath. Aggressive management of those symptoms offers patients the opportunity to deal with their anxieties about death, put affairs in order, and attends to the principal relationships that sustain them.

The issue of pain management is an important one to highlight here for there is an increasing body of research that finds pain is not adequately addressed for both the severely ill and elderly patients. In a broadcast titled “The Place of Palliative Medicine,” National Public Radio’s Patricia Leighton reported, “Without good palliative medicine, studies show 75 percent of all dying patients will suffer pain, 65 percent breathlessness, and half nausea” (Leighton, 1997). Cancer patients and their families in particular report tremendous frustrations over inadequate pain control. Some believe that more aggressive attention to controlling pain, nausea, and shortness of breath offer an alternative to those who are considering physician-assisted suicide because they are hopelessly uncomfortable.

Numerous state legislatures have passed positive initiatives, including approval of the use of medicinal marijuana, expansion of education to medical students and physicians regarding pain management, and elimination of obstacles to ordering adequate amounts of controlled substances (narcotics) for pain control. Other states are expanding laws regarding the criminality of assisted suicide.

Do Not Resuscitate Orders

If a senior’s heart or breathing stops while in a health care facility, emergency staff is mandated to make very effort to resuscitate that person. However, there are patients for whom resuscitation is inappropriate, and there are patients whose living wills indicate they do not want to be resuscitated. Consequently, the Joint Commission on Accreditation of Healthcare Organizations (JCAOH) requires each accredited institution – almost every hospital and nursing home – to develop a DNR policy to deal with such cases (McGee, Caplan, Spanoge, & Asch, 2001). DNR orders are signed by the patient’s physician and placed in the patient’s chart if the patient does not wish to be resuscitated. That patient, proxy, or advisor should make sure the physician signed and placed the DNR order in the patient’s medical records

If someone is homebound or in an accident and does not want to be resuscitated, 43 states (Last Acts, 2002) have authorized non-hospital or out-of-hospitalDNRs. Here the physician submits the DNR to emergency medical services, permitting the technicians not to resuscitate that patient. Without such an order, EMS protocols and state law mandate technicians to attempt to resuscitate any person whose heart or breathing has stopped. Seniors with an out-of-hospital DNR often wear a wristband or medallion that read “Do Not Resuscitate.” This is to advise EMS staff of their wishes.

A DNR order will not keep a person from getting other emergency medical treatment or pain relief. Medical attendants, doctors, and others who rely on DNR orders are protected under the law. You or your proxy may revoke a DNR order at any time.

No Universal Advanced Directive Form

State-specific advance directive forms and guides to end-of-life planning are widely available on the Internet and in different publications. In most instances, the publications can be downloaded from the Internet at no cost or purchased for a nominal fee. You should be aware that there is no universal advance directive from the works in every state. State requirements, as mentioned earlier, vary considerably. However, the widely used and distributed Five Wishes does substantially meet the requirements of 35 states. (Aging with Dignity’s website,, has a complete list of these states.)

Advance Directives – Distribute Widely, Review Frequently

Once completed, an advance directive should not be hidden away in a file drawer or tucked into a safe deposit box. Copies should be made and distributed to the physician, the health care proxy, family members, and others as appropriate. When hospitalized, admitted to a nursing home, or joining an HMO, a patient should make sure the directive is placed in the patient medical chart so that health care workers are advised of the patient’s wishes.

Filling out the forms and signing the document is not the end of the process, however. A senior’s goals may change over time, along with a revised diagnosis and prognosis. For the physician, end-of-life issues should be considered “an ongoing process, an opportunity to engage with patients and families” (Rabow et al., 2004). The same goes for seniors themselves and their proxies, who should periodically review the advance directive and make changes as necessary. All that is required to change the document is to complete a new form, making sure all copies of the old directive are destroyed. Of course, the new directive must also meet state legal requirements, such as witnessing the senior’s signature. Provide copies of the revised directive to relevant individuals, informing them of the change.

Heath Care Providers to Honor Patient Wishes

Health care providers are generally bound to respect a patient’s advance directive, although an individual physician may decline to honor a document for reasons of conscience. In that case, however, the physician is required to refer the patient to another doctor. If there is a dispute, either the proxy or the physician can consult with the hospital or nursing home’s ethics committee (McGee et al., 2001).

In 1992, following the U.S. Supreme Court’s Cruzan decision, the Joint Commission on the Accreditation of Health Care Organizations (JCAHO) began requiring certified institutions to establish a mechanism for dealing with ethical issues. To comply with the JCAHO mandate, more than 90 percent of U.S. hospitals established ethics committees to consult on cases, formulate policy, and educate staff (McGee et al., 2001).

These committees, made up of clinicians, social workers, and private citizens, often provide an administrative mechanism to review ethical issues. For example, a 79-year-old patient with end-stage Parkinson’s disease was recently admitted to a New York hospital with respiratory failure (from pneumonia). He completed an advance directive, clearly rejecting ventilation, but his family had a difficult time with the physician, whose religious belies were in conflict with the patient’s wishes. In this instance, the physician referred the case to the hospital’s ethics committee. After assessing the patient’s advance directive, the committee overruled the physician, and the ventilator was removed.

Advance directives are grounded in Supreme Court decisions and state laws. The Cruzan decision, for example, upheld the longstanding common law concept of patient autonomy. Writing for the majority, Chief Justice Rehnquist referred to the words of a former justice, who wrote, “Every human being of adult years and sound mind has a right to determine what shall be done to his body.” Chief Justice Rehnquist added, “The logical corollary of the doctrine of informed consent is that the patient generally possess the right not the consent, that is, to refuse treatment” (Cruzan vs. Director, Missouri Dept. of Health, 1990).

Further, the court also based its Cruzan decision on the 14th Amendment to the U.S. Constitution, which provides that no state “shall deprive any person of life, liberty, or property without due process of law.” The majority onion held that citizens do have a “constitutionally protected liberty interest in refusing treatment.”

State laws in al 50 states and the District of Columbia authorize and regulate the procedures for advance directives, health care directives, and living wills. These laws also limited a health care worker’s liability in following a patient’s wishes to reject treatment. In other words, the physician, operating in good faith, can withdraw a feeding tube on the order of an advance directive or living will and not be held liable.

While state laws provide the legal basis for advance directives, health care directives, and living wills, they are by no means consistent, uniform, or user friendly. As already mentioned, there is no advance directive form available to meet 50 frequently disparate standards. Aging with Dignity made an attempt in drafting Five Wishes to produce an advance directive that could be used in very state. Whoever, as mentioned earlier, Five Wishes is applicable in only 35 of the 50 states.

Charles P. Sabatino, of the American Bar Association’s Commission on Law and Aging, argued in a recent journal article (Sabatino, 2003) that there are problems with the state advance directive laws. You should be aware that such problems might exist in your state. Two such problems that could affect seniors are:

  • Portability. What happens if a senior completes an advance directive in Wisconsin and then becomes ill in Vermont? Will his or her state-specific advance directive be honored in a state that has its own unique requirements? Most states have reciprocity provisions, but interpretations may vary. Nonetheless, there are 12 states with no such language. On several occasions, federal legislation was introduced, but never passed, to pre-empt state laws to guarantee portability.
  • Multiple Advance Directive Laws. In the 1970s and 1980s, most states passed their living will statues; in the 1980s and 1990s, they authorized the durable power of attorney for health care laws. In passing two separate statutes, some states failed to harmonize the difference laws and instead left conflicting provisions.

There have also been attempts at the state level to harmonize the sometimes conflicting state laws. In 1993, the Uniform Laws Commission, a national commission drafting model legislation for adoption by the states, approved what is called the Uniform Health-Care Decision Act of 1993 (Last Acts, 2002). This model proposed a single, comprehensive advance directive law with no mandatory state-specific forms or language, authorizing default surrogates (next of kin) when there is no advance directive, and including “close friend” in the list of potential surrogates. However, not every state adopted these reforms. Consequently, the disparities remain.

The information above is reprinted from Working with Seniors: Health, Financial and Social Issues with permission from Society of Certified Senior Advisors® . Copyright © 2009. All rights reserved.