Living Will
The other form of an advance directive is a living will, also called "instructions," "directive to physicians," or "medical declaration" in other states. The living will provides written instructions about the specific interventions an individual desires to prolong or sustain life. The document also specifies the person’s preferences regarding unwanted treatment measures and the circumstances in which they want to refuse, limit, or withhold life-sustaining or life-prolonging treatment when the individual loses their mental capacity or becomes unable to communicate. Id. Life-sustaining treatments include artificial nutrition and hydration, dialysis, antibiotics, mechanical ventilation, cardiac resuscitation, defibrillation, and other invasive procedures. As stated previously, many state-specific forms limit the choices available for life-sustaining care to: 1) All Treatment Measures, 2) Artificial Hydration and/or Nutrition; and 3) Comfort Care Measures (OAG, 2007). However, an individual may delineate broad or specific instructions to healthcare providers for treatment decisions that do not fall within these 3 options as an addendum to the living will. The designated treatment decisions can be specified for care providers to follow only under certain circumstances, such as:
- Refusal of life-sustaining treatments if two physicians declare recovery of physical and mental health is not possible without constant care and supervision.
- Desire for life-sustaining treatments for a specified time frame (e.g. up to 6 months) to monitor potential recovery after a trauma with prolonged unconsciousness.
- Desire for life-sustaining treatments, no matter the circumstances.
- Refusal of long-term mechanical ventilation but acceptance of resuscitation and defibrillation, utilizing a specified subset of life-sustaining treatments.
- Refusal of life-sustaining treatments with Stage III or IV Alzheimer’s disease.
The complexities of many medical conditions preclude the preparation of an exhaustive list but forethought on the part of an individual often provides an accurate and reliable reflection for healthcare providers to follow, increasing the likelihood that a patient’s wishes will be followed.
A living will is typically effective only when two physicians certify that an individual suffers from a life-limiting condition or terminal / incurable illness or if the person is in a persistent vegetative or unconscious state. The American Health Lawyers Association (2005, Introduction §) defines a ‘life-limiting condition’ as:
a medical or surgical condition with significant functional impairment that is not likely (in the opinion of medical authorities) to be reversible by curative therapies, and that is anticipated in its ordinary course to progress toward death despite attempts at curative
therapies or modulation, the time course of which may or may not be determinable through reasonable medical prognostication.
State law may impose additional conditions or may limit the treatments to which the living will applies. If a patient’s condition was not diagnosed as life-limiting but the patient was unable to make decisions for himself, the durable power of attorney for health care would be effective but the living would not go into effect. Many, but not all, states recognize a living will as a legally binding document, even if a durable power of attorney for health care does not exist. Id., FAQ §. As state laws governing the use of advance directives vary, the validity of a living will may not be recognized in another state. Some states automatically honor directives from other states while some evaluate whether or not the directive conforms to its own law. Advance directives do not expire but if a new document is executed, the prior directive is considered null and void. Although unnecessary, the services of a lawyer are often beneficial in preparing an advance directive to avoid the pitfalls of non-compliance with state laws. Id.
An Advance Healthcare Directive combines the features of a living will and a durable power of attorney for healthcare, along with some other options. Idaho and California are two examples of states that offer this option. Although the advance directive is technically one form, the living will and durable power of attorney sections have separate legal significance to account for the fact that a durable power of attorney for healthcare only takes effect when a person cannot communicate with their healthcare provider. Id. Other methods exist to communicate an individual’s desires for medical care, such as (FCA, 2000):
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A Do Not Resuscitate or DNR order, which instructs providers not to resuscitate.
- A preferred intensity of care document, which outlines for a physician the patient’s preferences for care under special circumstances.
Although the scope of a DNR order is limited only to resuscitative measures and not other life-sustaining treatments covered by a living will, the DNR compels emergency medical technicians (EMT’s) to follow the order. EMT’s are not required to follow an advance directive. Rather, emergency personnel always stabilize an individual for transport to a hospital and then allow the attending physicians to determine the patient’s condition before any advance directives are implemented. It is beneficial to have an advance directive and a DNR order, if the person wishes to withhold life-sustaining treatment and avoid this type of scenario. Patients are encouraged to execute both a living will and a durable power of attorney for healthcare to ensure their treatment wishes are followed. The active involvement of a healthcare agent often minimizes any medical provider confusion regarding the patient wishes expressed in a living will. Conversely, the clear expression of a patient’s wishes in a living will reinforces the authority of an agent’s decisions, especially in light of a challenge by a friend or family member (NHPCO, 2005).
The role of Federal Law
While state law governs the scope and effect of an advance directive, federal law also plays a significant role in the utilization and recognition of advance directives. The Omnibus Budget Reconciliation Act (OBRA) was signed into law on November 5, 1990. One major component of this legislation was the Patient Self-Determination Act (PSDA), 42 U.S.C. 1395 cc (a) § 4751, which advocated the right of patients to control the decision-making process related to their healthcare needs through the utilization of written advance directives (PSDA, 1990). This federal law required all healthcare facilities (e.g. hospitals, nursing homes, home-health agencies, hospice programs, and health maintenance organizations (HMOs)) that receive payments from the Medicare and Medicaid programs to (ABA, 2005):
- provide adult patients with written information concerning their right to make decisions about their care, including refusing treatment.
- ask patients whether they have an advance directive and to record this information in the medical record.
- maintain written policies regarding discussions of advance directives with adults.
- honor advance directives.
- educate patients about advance directives.
- conduct community education.
- provide care and not discriminate against a patient whether or not the patient has executed an advance directive.
The role of the Judiciary
State and Federal legislatures obviously administer the regulations that facilitate the use of advance directives by millions of individuals. However, the judicial system supports the basic infrastructure of ‘patient rights’ that an advance directive is based on. Patients have the right to refuse medical treatment and the Supreme Court affirmed this right initially in Rogers v. Okin and then in Rennie v. Klein (RvO, 1979). Numerous state and federal courts have used these cases as precedent to defend the right to refuse treatment on the basis of a ‘right to privacy’, as recognized by the Supreme Court to exist within the Bill of Rights. In the landmark ruling of Griswold v. Connecticut in 1965, the Supreme Court recognized the creation of “peripheral rights” supported by other constitutional protections such as the 9th and 14th amendments, including the right to privacy (GvC, 1965).
Affirming the Basis for Advance Directives
Adult patients, presumed competent by the law, decline to participate in and/or receive medical treatment everyday by verbally expressing their refusal. The instruction of the court in Rogers v. Okin included the requirement that a patient must give informed consent before a medical/drug treatment could begin (RvO, 1979). The basis of informed consent revolves around the consideration of a patient as competent to make the decision at hand and offer the consent voluntarily (UW, 1998). In other words, a patient must be considered competent to exercise the right to refuse a medical treatment. As a result, many people unequivocally express their wishes regarding future medical care in the form of a written advance directive, in the event that the person loses their mental capacity due to illness or injury or becomes unable to communicate with their medical provider. The advance directive affords the individual the same right as they held when they were able to verbally express their refusal (Ortman, 2004).
Conclusion
Patient autonomy is one of the 5 basic principles of ethics, yet arguably held in even higher regard in the subfield of bioethics. The complexity of medical conditions during end-of-life care negatively affects an individual’s ability to participate effectively, if at all, in the myriad of decisions that occur every day. When a person becomes incompetent as can occur during end-of-life care, they cannot verbally consent or refuse to consent to a medical treatment or course of treatment. Ortman (2004, Conclusion §) delivers an astute synopsis of the progressive dilemma: “Modern advancements in medical knowledge have created legal, ethical, political, and economic dilemmas beyond those encountered in ‘traditional’ medicine.” The execution of an advance directive allows an individual to control the medical care they receive in future end-of-life situations, when they become unable to consent to or refuse a specific medical treatment. We must promote the use of advance directives and consistent communication with our loved ones and physician about the type of medical treatment we desire when faced with a life limiting condition to ensure patient autonomy throughout this difficult process.
References
American Bar Association (ABA, 2005). Healthcare Advance Directives: What is the Patient Self-Determination Act? Retrieved August 1, 2007 from the website:
American Health Lawyers Association (AHLA, 2005). A Guide to Legal Issues in Life Limiting Conditions. Retrieved July 29, 2007 from the website:
Family Caregiver Alliance (FCA, 2000). End-of-Life Decision Making. Retrieved July 29, 2007 from the website:
Griswold v. Connecticut (GvC, 1965). 381 U.S. 479. Retrieved August 2, 2007 from:
Idaho Medical Consent & Natural Death Act (2005), Idaho Code Title 39, Chapter 45. Retrieved July 31, 2007 from the website:
Idaho Office of the Attorney General (OAG, 2007). Living Wills and Idaho’s Natural Death Act. Retrieved July 27, 2007 from the website:
National Hospice & Palliative Care Organization (NHPCO, 2004). Communicating End-of-Life Wishes. Retrieved July 31, 2007 from the website:
National Hospice & Palliative Care Organization (NHPCO, 2005). Questions and Answers: Advance Directives and End-of-Life Decisions. Retrieved July 31, 2007 from the website:
Ortman, Marie. The Current State of Advance Directive Law in Ohio: More Protective of Provider Liability than Patient Rights. J Law & Health. 2004; 19(2): 411-449
Patient Self Determination Act (PSDA, 1990), 42 U.S.C. 1395 cc (a) § 4751
Rogers v. Okin (RvO, 1979). 1979; 478: 1342-89. Retrieved August 2, 2007 from:
University of Washington (UW, 1998). Ethics in Medicine: Informed Consent. Retrieved August 2, 2007 from:
VITAS (2004). National Survey on Death, Dying and Hospice Care in America. November 11, 2004. Retrieved July 29, 2007 from the website: