Misconceptions About Living Wills, Health Care Proxies and End-of-Life Decisions

By Martin M. Shenkman, Esq.

The tragedy of Terri Schiavo and the publicized legal battle that emerged between her family members of whether to withdraw life-sustaining measures, caused millions of clients to rush into preparing end-of-life documents.

Raising people's consciousness to focus on these issues is a positive development that emerged from the tragedy, as long as clients have a thorough understanding of the intricacies of crucial end-of-life decisions and do not make uninformed decisions based on the 60-second media sound bites.

Understanding the following misconceptions will equip advisors to address in a practical and efficient manner the many questions clients will pose. Because there are differences in state laws, and because these laws will undoubtedly be revised to address the aftermath of the Schiavo tragedy, you will need to review your applicable state law. This article focuses on five issues that are often overlooked.

Misconception 1: Clients need only a living will.

A living will is not enough. A health care proxy is also essential. A health care proxy, also called a medical power of attorney, is a legal document through which clients designate a trusted person (agent) to make health care decisions for them if they are unable, because of a disability or an illness, to do so. Although the two documents are integrally related, having them prepared and executed as independent documents may facilitate their use in many instances. The focus of the health care proxy is to appoint someone as an agent to make health care decisions, as well as name several successors. Joint agents, however, should never be named.
  • In some instances, health care providers prefer a health care proxy to the living will.
  • Some states do not afford the same recognition to a living will as they do to a health care proxy.
  • A health care proxy can address the inadequacy of a living will. For a living will to be valid, decisions may have to be specified in a manner that presents "clear and convincing" proof of a client's wishes. This is not always simple, especially if the client is uncertain, or has several medical conditions that make it difficult to clarify the desired course of action. General statements such as "no heroic measures," and other similar statements typically used in living wills, may not suffice.
  • It is impossible to include every potential illness or treatment in a living will. When the client appoints a person to act in his or her behalf, these decisions can be made based on the client's condition at that time, the available medical procedures and advice, and the client's general wishes.

Misconception 2: Your clients need only a health care proxy.

Numerous clients may also have the impression that a health care proxy is all they need. This perception is just as dangerous as only having a living will. In addition to a health care proxy, clients must also prepare and sign a living will, which addresses a range of important legal, financial, religious and medical issues. The living will should provide the general directions and parameters for the agent appointed under the health care proxy to follow. It should specify how a client should be cared for in the event of grave illness. What decisions should be made in the event of a terminal illness? What time frames should apply? The client may have very different feelings if he or she has a life expectancy of 12 months instead of 30 days. Many standard forms ignore this vital detail.

  • The client's agent may not be available when an immediate medical decision has to be made. In the absence of an agent, a living will—that includes statements of the client's general health care wishes—can provide guidance for the medical staff.
  • Agents often misunderstand, or intentionally refuse to follow, the wishes of the client. For example, the most common reason medical professionals cite for children not honoring a parent's wishes to avoid heroic measures is "guilt." That guilt often reflects itself in children demanding every lifesaving measure available—even in contradiction to parental wishes. To avoid this, create a living will that clearly sets forth key parameters, providing objective guidance for the agent and other loved ones.

Misconception 3: Key issue to address is whether your client wants heroic measures.

Should mechanical means be used to prolong life? That may be a vital decision, but it is far from the only topic living wills need to address. The Terri Schiavo tragedy did not end with her death. Fights continued over whether she should be buried or cremated, and even the location for the burial or interment. The sad lesson is that every client should make all personal end-of-life decisions, not just the decision concerning heroic measures. Most standard forms, even most lawyer prepared forms, fall short of the comprehensive communication that living wills should really provide family and loved ones. Additional decisions to address include:

Nutrition and Hydration. Living wills should specifically state whether the client would ever permit the agent to withdraw artificial nutrition and hydration. Clients may decide to withdraw nutrition, but not hydration. If the client does not want artificial feeding, even if discontinuing it could hasten death, this should be specifically stated. Many states will not permit the cessation of nutrition or hydration unless the living will specifically authorizes it. How should "artificial" be defined? Should a distinction be made between withdrawing nutrition and hydration (e.g., a feeding tube) versus withholding the initial connection to artificial feeding tubes?

Quality-of-Life Statements. A living will may be the only written evidence of the client's personal wishes. Therefore, it should clearly and precisely state the client's feelings and wishes about health care, treatment, quality of life, whether he or she wishes to refuse or accept medical treatment, and so forth. The law may require that the living will demonstrate this with "clear and convincing evidence." Many living wills contain general statements that if there is "no quality of life," then "no heroic measures" should be taken to prolong the client's life. To one person, no quality of life might mean the inability to communicate to the outside world, with no anticipation of recovery. To another person, no quality of life may mean severe and ongoing pain that cannot be abated. Clients should analyze their feelings and concerns about quality of life and endeavor to communicate them. If this concept is important to the client's determination as to whether life support should be halted, the living will must communicate these wishes. The client may wish to add personal feelings or comments to tailor this portion of his or her document.

Anatomical Gifts (Organ Donations). Organ donations are a vital step to help save other people's lives. Clients should seriously and carefully consider permitting organ donations. If clients do not wish to permit organ donations, they should indicate that wish as well. For the clients who are uncomfortable being an organ donor, they should be encouraged to permit organ donations for family members.

Burial Instructions. If a client wants a specific eulogy, service or other steps to be taken, he or she should specify this in his or her living will. If a client wants a traditional religious ceremony, the living will should state this. Many clients, perhaps the majority, may not want religious restrictions applying to end-of-life medical decisions (such as the removal of a feeding tube). A majority of these clients, however, do want to adhere to traditional religious services and customs. This apparent contradiction (religious customs applicable to burial, but not medical decisions) must be addressed. If the client wishes cremation and interment instead of burial, this should be stated. If advance arrangements for the location of burial or interment have been made, this should be stated.

Pain Relief. How does the client feel about pain medication and other treatments? Should they be administered even if they hasten death? Are there any adverse religious implications if pain relief hastens death? Should a distinction be made between the side effect of pain relief somewhat hastening death versus affirmatively using pain medication in doses intended to cause death? How can this distinction be made? How important is consciousness versus pain relief?

Misconception 4: Religious issues are not critical to address.

The initial reaction of many clients is to dismiss religious issues. Most people who sign living wills while they are healthy are not concerned about religious issues. Many of these same people, when faced with a major catastrophe such as terminal illness or loss of a close family member, however, fall back to their religious roots for guidance and comfort. Unfortunately, it may then be too late for these clients, or their loved ones, to remedy the situation.

Most living wills completely ignore religious implications. Living will forms provided by religious organizations often do not address the dichotomy between burial and end-of-life medical decisions. Thus, every client must tailor whatever living will form they use to expressly reflect their wishes. Together, the lawyer and the client must consider the religious implications of the entire health care process while the client is competent, so in the event the family experiences tragedy, no one will regret what was done.

Religious issues affecting living wills and end-of-life decisions include:

  • The ability to cease "heroic measures" or preserve life due to a specific religious requirement.
  • Whether (and when) nutrition and hydration can be withdrawn.
  • Whether the quality of life is relevant to the decision process, or merely life itself.
  • Funeral and burial customs and rituals.
  • Permissibility and conditions of organ donations.
  • The administration of pain relief, the impact on consciousness to perform end of life rights, and the distinction between the administration of pain relief medications to relieve pain versus the administration of medications that hasten death.
  • The use or nonuse of blood products.
  • Who can be named as agent.

Misconception 5: A simple document from the Internet will suffice.

A combination of a comprehensive living will, health care proxy and a plan of communication are essential to achieve any client's wishes. Too many clients rely on simplistic commercial forms purchased in office supply stores or obtained from various organizations or websites. Most of these forms do not address the myriad of issues highlighted in this article. Often, the commercial forms are limited to simple instructions such as "pulling the plug," but statements such as, "I do not want heroic measures if I am terminally ill" do little to clarify tough, emotional issues or ease the burden of loved ones charged with making the decisions. Many of the simple commercial forms are not adequate for a client to communicate his or her personal, specific or religious wishes to friends, family or others.


Merely signing a living will or health care proxy, especially one that is too vague and does not address the level of detail discussed in this article, will accomplish little in extreme situations. It may not avoid the strife that afflicted the Schiavo family. These battles, even though not covered in the media, occur with tremendous frequency. Documents must be prepared with proper care, attention and thought. Clients must discuss these issues with family and loved ones, religious advisors, and medical providers in order to potentially avoid the same strife, and pain, Terri Schiavo's family experienced.

About the Author

Martin M. Shenkman, CPA, MBA, J.D., an attorney who concentrates on estate and tax planning and estate administration, has a private practice in Teaneck, N.J., and New York City. Shenkman is a regular source for business publications, including The Wall Street Journal, Fortune, Money, The New York Times and others. He has a weekly radio show on Money Matters Financial Network. Shenkman has published 34 books, including "Living Wills & Health Care Proxies: Assuring That Your End-of-Life Decisions Are Respected," which is currently in process. He's admitted to the bar in New York, New Jersey and Washington, D.C., and is a CPA in New Jersey, Michigan and New York.

Please call Laurie Dietrich at 507-933-6043, or e-mail us at dietrich@gustavus.edu, for more information.