Living Will

A living will is a written document that declares what life-sustaining medical interventions a person wants if she becomes terminally ill with little or no hope of recovery and is unable to communicate her wishes. It was created in response to the increasing ability of medical technology to prolong dying, frequently in a painful and undignified way. Often at the time life supports are needed patients are unable to communicate their wishes. A patient's autonomy and right to privacy may be violated in such circumstances when it is medical personnel or others, and not the patient, who make crucial decisions regarding life supports. Living wills are designed to permit patients to "speak" when they are unable to by providing directions in advance. It is also a way of giving meaning to the doctrine of informed consent, which requires physicians to obtain the consent of their patients before beginning any medical treatment.

The first living will was conceived in 1967 by Luis Kutner, a human-rights lawyer in Chicago and cofounder of Amnesty International, in conjunction with the Euthanasia Society of America (now called Partnership for Caring). The living wills were distributed by the Euthanasia Society, and in addition to their practical use, they served as a way of promoting education and dialogue about endof-life issues.

The use of living wills was further popularized by the Karen Ann Quinlan case in 1976. Quinlan was twenty-one years old when she was placed on a respirator after she stopped breathing for unexplained reasons and entered a chronic persistent vegetative state. Her parents were forced to turn to a court to have her respirator removed so she could die naturally, thus bringing attention to the fact that few if any mechanisms existed for making these crucial decisions. The case acted as a catalyst for state legislatures throughout the 1970s and mid-1980s to pass living will laws.

Living wills are narrowly tailored documents that generally apply only when a person has a terminal illness, although some states allow living wills to be used when a person is in an "irreversible coma" or "persistent vegetative state." Living wills do not apply to all types of medical treatment but are limited to life-sustaining treatment or to maintenance medical care. State living will laws differ in their definitions of what constitutes life-sustaining treatment. Generally it includes artificial technology that postpones death, but not care that eases pain. In over half of the states in the United States nutrition and hydration are not considered life-sustaining treatment (although these types of provisions may conflict with court decisions that have held otherwise). In some states, persons must specifically state in their living will whether or not they want nutrition and hydration withdrawn.

Under most state laws, living wills never expire, although some states require them to be renewed periodically. Living wills can be revoked or changed at any time. Living wills must be signed by witnesses, usually two, who cannot be family members or health care workers. Some states provide mandatory living will forms; other states are more flexible. It is not clear that a living will executed in one state will be effective in another state. Only a handful of states have laws that expressly provide that another state's living will be accepted, although this does not mean that a state without such a law will not honor a living will executed in another state.

Even a properly executed living will poses obstacles to compliance. Many living wills consist of a one- to two-page form that contains standardized and broad language that is too vague to provide enough guidance to physicians. For example, one state's statutory living will form provides, in part, that if the person has "an incurable and irreversible injury, disease, or illness judged to be a terminal condition by my attending physician . . . such procedures that will only prolong the dying process [are to] be withheld or withdrawn." Such language leaves open to interpretation what is meant by a terminal condition. For some it means imminent death and for others it means an irreversible condition that will ultimately result in death. It also provides only vague guidance as to what procedures shall not be used. A feeding tube may be considered a comfort measure to some and a life support to others.

Even those forms that permit people to insert their own language often suffer from similar deficiencies, with people often using the same broad language to record their wishes. On the other hand, using more specific language can also have its pitfalls. It may make the living will difficult to apply if it does not fit the situation exactly. And even if the directions are clearly understood, when treatment should be stopped may also not be clearly spelled out in the living will. Finally, for many people, it is difficult to predict in advance what one would want in the event of a life-threatening or terminal illness. Not all possible scenarios can be anticipated.

For these and other reasons, many health care providers and advocacy groups suggest that living wills may provide a false sense of security. Physicians may not comply with them for a variety of reasons, including that they are often not available when needed (many people keep their only copy locked away in a security box) or because they do not provide specific enough instructions. To overcome these deficiencies, advocacy groups and legal organizations suggest that in addition to a living will, a person should execute a health care proxy, which appoints a person to make medical decisions when the patient can no longer do so. Several states are now combining health care proxies and living wills into one document. This permits a person who knows the patient, including his values, lifestyle, and religious beliefs, to provide guidance in making a decision that will best reflect the patient's wishes. It is also suggested that people complete a values history to aid the health care proxy in making decisions. A values history includes a description of the person's overall attitude toward life and health, dependency, his personal relationships, religious background and beliefs, finances, and other issues that may affect what type of medical intervention he wants at the end of life.

Living wills have served as an important educational tool in educating the public about end-of-life issues. They have been criticized as ineffective, however, because they are often too vague to provide guidance. Increasingly, other forms of advance directives that more clearly set out a patient's preferences and designate a person to make decisions when the patient cannot are being recommended.

See also: Advance Directives; Cruzan, Nancy; End of-Life Issues; Euthanasia; Informed Consent; Life Support System; Natural Death Acts; Persistent Vegetative State; Quinlan, Karen Ann

Bibliography

Cantor, Norman L. "Advance Directive Instruments for End-of-Life and Health Care Decision Making." Psychology, Public Policy and Law 4 (1998):629–652.

Emanuel, Linda L., Michael J. Barry, John D. Stoeckle, Lucy M. Ettelson, and Ezekiel J. Emanuel. "Advance Directives for Medical Care: A Case for Greater Use." New England Journal of Medicine 324 (1991):889–895.

Furrow, Barry R., Thomas L. Greaney, Sandra H. Johnson, Timothy Stoltzfus Jost, and Robert L. Schwartz. Health Law. St. Paul, MN: West Publishing, 1995.

Koch, Tom. "Life Quality vs. the Quality of Life: Assumptions Underlying Prospective Quality of Life Instruments in Health Care Planning." Social Sciences and Medicine 51 (2000):419–427.

LoBuono, Charlotte. "A Detailed Examination of Advance Directives." Patient Care 34, no. 21 (2000):92–108.

Rich, Ben A. "Advance Directives: The Next Generation." Journal of Legal Medicine 19 (1998):1–31.

Teno, Joan, et al. "Advance Directives for Seriously Ill

Hospitalized Patients: Effectiveness with the Patient Self-Determination Act and the Support Intervention." Journal of the American Geriatrics Society 45 (1995):500–507.

VICKI LENS

Living Will

Definition
Purpose
Description
Preparation
Normal results

Definition

A living will is a legal document with which patients instruct healthcare providers about their wishes with respect to medical procedures, in case they become incapacitated. The living will and the durable medical power of attorney are two federally mandated parts of what is known as advance medical directives.

Purpose

Advance medical directives are legal mechanisms to assure that patients’ wishes about medical procedures are carried out in their final days or when they are incapacitated. The documents reflect patients’ rights of consent and medical choice under conditions in which patients can no longer choose for themselves what medical interventions they wish to undergo.

In 1990, recognizing the importance of patient treatment wishes at the end of life, Congress enacted the Patient Self-Determination Act (PSDA). This federal law requires that patients admitted to hospitals, nursing homes, home health agencies, HMOs, and hospices be informed of their right under state law to prepare advance healthcare directives and to have the

KEY TERMS

Durable medical power of attorney— A legal document that empowers a person to make medical decisions for the patient should the patient be unable to make the decisions.

Medical directives— Legal documents that include a declaration of wishes pertaining to medical treatment (living will) and the stipulation of a proxy decision maker (power of attorney).

Patient Self-Determination Act (PSDA)— Federal law that ensures that medical providers offer the option of medical directives to patients and include the documents in their medical records.

Surrogate— A person who represents the wishes of the patient, chosen by the patient and stipulated by a legal document as power of attorney.

documents entered into their medical record. Each state has different requirements for the living will and the power of attorney. It is important to research and create advance medical directives before an accident or illness. Living wills have become customary in many parts of the country and are broadly respected by health care providers. However, most Americans do not have a living will or a medical power of attorney to ensure its compliance.

Description

The living will can be a very broad or a very focused document, according to the wishes of the patient. It is the patient’s declaration, a written statement of what he or she wants to occur in the event of a serious accident or illness. It is primarily directed to medical personnel about the type of care the patient wishes to receive or not receive, in situations of terminal illness or incapacitation.

The document commonly includes medical procedures that are usually administered to patients who are seriously ill, such as:

• blood or plasma transfusion
• cardiopulmonary resuscitation (CPR)
• dialysis
• administration of drugs
• use of a respirator
• surgery
• tissue and organ donation

The living will declaration can also include issues of pain medication, food, and water. Most states recognize that relief from pain and discomfort are procedures that most people wish to have and these are not considered life-prolonging treatments. In some states, however, food and water may be considered life prolonging, and the consideration to forego them may fall within the rights of the patient to refuse. What may be included in the living will depends upon the state.

The living will—in some states called instructions, directive to physicians, or declaration—does not require a surrogate (an appointed person) to make decisions for the patient. Most states include these types of instructions in their medical durable power of attorney forms. Not all states, however, recognize separate living wills as legally binding; California, for instance, does not.

Preparation

The living will should be given careful thought, and be talked about with patient’s family, physician, and care providers. It is highly recommended that discussion of patient wishes occur before medical treatment is necessary, because the living will involves the patient’s family and loved ones, who are expected to assist in its implementation. It should be researched for the state in which the patient is most likely to receive medical care, and be dated and signed before two witnesses.

The living will may be drafted on standardized forms, with or without the assistance of an attorney. The document may be revoked in writing, or orally, by either the patient (the person making the advance directive) or by a designated proxy (a surrogate) at any time. If the patient does not specify in the living will a particular element of treatment or treatment withdrawal, then it is not included. It is important that living wills be as specific and detailed as possible.

Most hospitals offer advance medical directive resources, commonly in the religious office attached to the hospital. Coupled with a durable medical power of attorney, the living will ensures in advance that patient wishes about the quality of death are respected.

Normal results

The living will, whether prepared prior to hospitalization or prepared once the patient is admitted, is placed in the patient’s medical chart along with other documents such as the medical power of attorney declaration. Providers are required by federal law to honor this declaration of the patient’s wishes. The document serves as a statement of intentions on the part of the patient and can be very important to family members, healthcare providers, and patient proxy during a very distressful and uncertain time.

Resources

BOOKS

Burnell, George M. Freedom to Choose: How to Make End-of-Life Decisions on Your Own Terms. Amityville, NY: Baywood Publishing, 2007.

Mirarchi, Ferdinando. Understanding Your Living Will: What You Need to Know Before a Medical Emergency. Omaha, NE: Addicus Books, 2006.

Schneiderman, L. J. Embracing Our Mortality: Medical Choices in an Age of Miracles New York: Oxford University Press, 2008.

ORGANIZATIONS

Caring Connections. 1700 Diagonal Road, Suite 625, Alexandria, Virginia 22314. (703) 837-1500. Fax: (703) 837-1233. Toll-free hotline: (800) 658-8898. http:/www.caringinfo.org/ (accessed April 1, 2008).

U.S. Living Will Registry. 523 Westfield Ave., P.O. Box 2789, Westfield, NJ 07091-2789. Toll-free: (800) LIV-WILL or (800) 548-9455. http://www.uslivingwillregistry.com/ (accessed April 1, 2008).

OTHER

Advance Directives, Living Wills, Powers of Attorney: What’s the Difference?. Nolo Law for All. http://www.nolo.com/resource.cfm/catID/EDC82D5A-7723-4A77-9E10DDB947D1F801/309/292/295/ (accessed April 1, 2008).

Living Wills and Other Advance Directives. http://www.intelihealth.com/IH/ihtIH?d=dmtContent&c=227472&p=~br,IHW|~st,24479|~r,WSIHW000|~b,*| (accessed April 1, 2008).

Nancy McKenzie, PhD

Robert Bockstiegel

Lobectomy, hepatic seeHepatectomy

Living will

Definition

A living will is a legal document in which patients instruct health-care providers about their wishes with respect to medical procedures should they become incapacitated. The living will and the durable medical power of attorney are two federally mandated parts of what is known as advanced medical directives.

Purpose

Advanced medical directives are legal mechanisms to assure that patients' wishes with respect to a number of medical procedures are carried out in their final days or when they are incapacitated. The documents reflect patients' rights of consent and medical choice under conditions whereby patients can no longer choose for themselves what medical interventions they wish to undergo.

In 1990, recognizing the importance of patient treatment wishes at the end of life, Congress enacted the Patient Self-Determination Act (PSDA). This federal law ensures that patients admitted to hospitals, nursing homes , home health agencies, HMOs, and hospices be informed of their rights under state law to prepare advance health care directives and have the documents entered into their medical record. Each state has different requirements for the living will and the power of attorney. It is important to research medical directives before an accident or illness make that an impossibility. Living wills have become customary in many parts of the country and are broadly respected by health care providers. However, a high percentage of Americans do not have a living will and/or a power of attorney to ensure its compliance.

Description

The living will can be a very broad or a very narrow document, according to the wishes of the patient. It is the patient's declaration, a written statement of what he or she wants to occur in the event of serious accident or illness. It is primarily directed to medical personnel about the type of care the patient wishes to have, or wishes not to have, under situations of terminal illness or incapacitation.

The document commonly includes the kinds of medical procedures that are usually administered to patients who are seriously ill. These may include:

• transfusions of blood and blood products
• cardiopulmonary resuscitation (CPR)
• diagnostic tests
• dialysis
• administration of drugs
• tissue and organ donation
• use of a respirator
• surgery

The living will declaration can also include issues of pain medication, food, and water. Most states recognize that relief from pain and discomfort are procedures that most people wish to have and these are not considered life-prolonging treatments. In some states, however, food and water may be considered life prolonging, and the consideration to forego them may fall within the rights of the patient to refuse.

What may be included in the living will depends upon the state. The living will—in some states called instructions, directive to physicians, or declaration—does not require a surrogate (an appointed person) to make decisions for the patient. Most states include these types of instructions in their medical durable power of attorney forms. Not all states, however, recognize separate living wills as legally binding; California, for instance, does not.

Preparation

The living will should be given careful thought, and be talked about with patient's family, physician, and care providers. It is highly recommended that discussion of patient wishes occurs before medical treatment is necessary, because the living will involves both the patient's family and loved ones, who are expected to assist in its implementation. It should be researched for the state in which the patient is most likely to receive medical care, and be dated and signed before two witnesses.

KEY TERMS

Durable medical power of attorney —A legal document that empowers a person to make medical decisions for the patient should the patient be unable to make the decisions.

Medical directives —Legal documents that include a declaration of wishes pertaining to medical treatment (living will) and the stipulation of a proxy decision maker (power of attorney).

Patient Self-Determination Act (PSDA) —Federal law that ensures that medical providers offer the option of medical directives to patients and include documents in their medical records.

Surrogate —A person who represents the wishes of the patient, chosen by the patient and stipulated by a legal document as power of attorney.

The living will may be drafted on standardized forms, with or without the assistance of an attorney. The document may be revoked in writing, or orally, by either the patient (the person making the advance directive) or by a designated proxy (a surrogate) at any time. If the patient does not specify in the living will a particular element of treatment or treatment withdrawal, then it is not included. It is very important that living wills be as specific and detailed as possible.

Most hospitals offer a medical directives resource, commonly in the religious office attached to the hospital. Coupled with a durable medical power of attorney (a person chosen to make medical decisions on the patient's behalf if the patient cannot make his or her own decisions), the living will ensures in advance that patient wishes about the quality of death are respected.

Results

The living will, whether prepared prior to hospitalization or prepared once the patient is admitted, is placed in the patient's medical chart along with other documents such as the medical power of attorney declaration. Providers are required by federal law to honor this declaration of the patient's wishes. The document serves as a statement of intentions on the part of the patient and can be very important to family members, health care providers, and patient proxy during a very distressful and disconcerting time.

Resources

PERIODICALS

Matousek, M. “Start the Conversation: The Modern Maturity Guide to End-of-Life Care.” “The Last Taboo.” Modern Maturity (September-October 2000).

ORGANIZATIONS

Partnership for Caring. 1620 Eye St., NW, Suite 202, Washington, DC 20006. (202) 296-8071. Fax: (202) 296-8352. Toll-free hotline: (800) 989-9455. http://www.partnershipforcaring.org/.

U.S. Living Will Registry. 523 Westfield Ave., P.O. Box 2789, Westfield, NJ 07091-2789. Toll-free: (800) LIV WILL or (800) 548-9455). http://www.uslivingwillregistry.

com/.

OTHER

Living Wills And Other Advance Directives. http://www.intelihealth.com.

What You Can Cover in Your Healthcare Directives. Nolo Law for All. http://www.nolo.com/lawcenter/ency.

Nancy McKenzie Ph.D.

Living will

Definition

A living will is a legal document in which patients instruct health-care providers about their wishes with respect to medical procedures should they become incapacitated. The living will and the durable medical power of attorney are two federally mandated parts of what is known as advanced medical directives.

Purpose

Advanced medical directives are legal mechanisms to assure that patients' wishes with respect to a number of medical procedures are carried out in their final days or when they are incapacitated. The documents reflect patients' rights of consent and medical choice under conditions whereby patients can no longer choose for themselves what medical interventions they wish to undergo.

In 1990, recognizing the importance of patient treatment wishes at the end of life, Congress enacted the Patient Self-Determination Act (PSDA). This federal law ensures that patients admitted to hospitals, nursing homes , home health agencies, HMOs, and hospices be informed of their rights under state law to prepare advance health care directives and have the documents entered into their medical record. Each state has different requirements for the living will and the power of attorney. It is important to research medical directives before an accident or illness make that an impossibility. Living wills have become customary in many parts of the country and are broadly respected by health care providers. However, a high percentage of Americans do not have a living will and/or a power of attorney to ensure its compliance.

Description

The living will can be a very broad or a very narrow document, according to the wishes of the patient. It is the patient's declaration, a written statement of what he or she wants to occur in the event of serious accident or illness. It is primarily directed to medical personnel about the type of care the patient wishes to have, or wishes not to have, under situations of terminal illness or incapacitation.

The document commonly includes the kinds of medical procedures that are usually administered to patients who are seriously ill. These may include:

• transfusions of blood and blood products
• cardiopulmonary resuscitation (CPR)
• diagnostic tests
• dialysis
• administration of drugs
• tissue and organ donation
• use of a respirator
• surgery

The living will declaration can also include issues of pain medication, food, and water. Most states recognize that relief from pain and discomfort are procedures that most people wish to have and these are not considered life-prolonging treatments. In some states, however, food and water may be considered life prolonging. and the consideration to forego them may fall within the rights of the patient to refuse. What may be included in the living will depends upon the state.

The living will—in some states called instructions, directive to physicians, or declaration—does not require a surrogate (an appointed person) to make decisions for the patient. Most states include these types of instructions in their medical durable power of attorney forms. Not all states, however, recognize separate living wills as legally binding; California, for instance, does not.

Preparation

The living will should be given careful thought, and be talked about with the patient's family, physician, and care providers. It is highly recommended that discussion of patient wishes occurs before medical treatment is necessary, because the living will involves both the patient's family and loved ones, who are expected to assist in its implementation. It should be researched for the state in which the patient is most likely to receive medical care, and be dated and signed before two witnesses.

The living will may be drafted on standardized forms, with or without the assistance of an attorney. The document may be revoked in writing, or orally, by either the patient (the person making the advance directive) or by a designated proxy (a surrogate) at any time. If the patient does not specify in the living will a particular element of treatment or treatment withdrawal, then it is not included. It is very important that living wills be as specific and detailed as possible.

Most hospitals offer a medical directives resource, commonly in the religious office attached to the hospital. Coupled with a durable medical power of attorney (a person chosen to make medical decisions on the patient's behalf if the patient cannot make his or her own decisions), the living will ensures in advance that patient wishes about the quality of death are respected.

Normal results

The living will, whether prepared prior to hospitalization or prepared once the patient is admitted, is placed in the patient's medical chart along with other documents such as the medical power of attorney declaration. Providers are required by federal law to honor this declaration of the patient's wishes. The document serves as a statement of intentions on the part of the patient and can be very important to family members, health care providers, and patient proxy during a very distressful and disconcerting time.

See also Do not resuscitate order.

Resources

periodicals

Matousek, M. "Start the Conversation: The Modern Maturity Guide to End-of-Life Care." "The Last Taboo." Modern Maturity (September-October 2000).

organizations

Partnership for Caring. 1620 Eye St., NW, Suite 202, Washington, DC 20006. (202) 296-8071. Fax: (202) 296-8352. Toll-free hotline: (800) 989-9455 <www.partnershipforcaring.org/>.

U.S. Living Will Registry. 523 Westfield Ave., P.O. Box 2789, Westfield, NJ 07091-2789. Toll-free: (800) LIV-WILL or (800) 548-9455). <www.uslivingwillregistry.com/>.

other

Living Wills And Other Advance Directives. <wwww.intelihealth.com>.

What You Can Cover in Your Healthcare Directives. Nolo Law for All. <wwww.nolo.com/lawcenter/ency>

Nancy McKenzie, PhD

LIVING WILL

A written document that allows a patient to give explicit instructions about medical treatment to be administered when the patient is terminally ill or permanently unconscious; also called an advance directive.

With improvements in modern medicine, the life of persons who are terminally ill or permanently unconscious can be prolonged. For increasing numbers of persons, the decision of whether to prolong life is being made in the form of a written document called a living will. The living will is one type of advance directive that may be used by a person before incapacitation to outline a full range of treatment preferences or, most often, to reject treatment.

A living will extends the principle of consent, whereby patients must agree to any medical intervention before doctors can proceed. It allows the patient to guide health care for the future when she may be too ill to make decisions concerning care. It can be revoked by the patient at any time. For many the living will preserves personal control and eases the decision-making burden of a family.

Forty-two states and the District of Columbia have living-will statutes that make a properly executed living will legally binding. In states that do not have a statute, living wills stand as a clear expression of the patient's wishes. Living-will statutes require that the person be legally competent to execute the will and that the will be witnessed by at least one disinterested person. Once a person who has a valid living will is terminally ill, the attending physician and a second physician must certify in writing that there is no reasonable expectation for improvement in the patient's condition and that death will occur as a result of the incurable disease, illness, or injury.

Upon this certification the doctor is obligated to follow the instructions contained in the living will. This typically means the patient does not want any medical procedures that serve only to prolong but not prevent the dying process. Therefore, if the patient is unable to breathe, the doctor is not required to connect the patient to a respirator. A patient may state in a living will that he does not want a feeding tube if unable to swallow food. Another common directive is to forbid resuscitation if the patient's heart stops beating.

Living wills have been criticized because they are usually limited to the withholding or withdrawing of "life-sustaining" procedures from a patient with a "terminal condition" or "terminal illness," and thus do not accurately reflect the broad legal right to refuse treatment. In addition, by their very nature, living wills reduce the patient's wishes to writing, and thus may be too rigid (or too vague) to adapt to changing interests or anticipate future circumstances.

To overcome these problems, many states have enacted statutes that permit a competent adult to designate a surrogate decision maker (also termed a health care proxy or agent) to make health care decisions for her in the event of incapacitation. The proxy's authority is usually not limited to decisions about life-sustaining treatment. A proxy can supplement a living will.

All fifty states have durable-power-of-attorney statutes that permit an individual (the principal) to designate another person (the attorney in fact) to perform specific tasks during any period of incapacity. Though most of these statutes do not expressly refer to medical care decisions, no court has ruled that they preclude the delegation of medical decision-making authority to the attorney in fact.

cross-references

Death and Dying; Health Care Law; Organ Donation Law; Patients' Rights; Physicians and Surgeons; Quinlan, In re.