A Timely Look at Living Wills
By Robert L. Moshman, Esq.
iving wills are on the front pages and in the forefront of estate-related conversations as a result of the Terri Schiavo case.
For estate-planning professionals who lived through the era of the Quinlan and Cruzan cases fifteen years ago, there is a depressing similarity; despite all the progress made, there was once again a helpless person, family members facing terrible decisions, and courts intervening.
It is enough to prompt people to set up their own living wills; regardless of what treatment people want to have provided or withheld in the event they are unable to make medical decisions for themselves, no one wants to be the focus of family frictions and litigation.
In time, the heightened awareness of living wills may once again fade from public consciousness, but the importance of having an effective living will is going to continue. Let's therefore review the history and context of living wills, what clients need to make informed decisions, and consider what professional approaches should be part of any best- practices checklist.
Note: It is not the purpose of this article to take sides or advocate for patient-care standards in the absence of living wills. Rather, we have attempted to identify those issues that will have a bearing upon professional interaction with clientele.
From Quinlan to Schiavo
Normally speaking, discussions of pain, suffering, and discontinuing life support to hasten death are not exactly everyone's favorite subject. But with the issues of the Schiavo case so prominent in mind, numerous people are talking about living wills and asking questions.1
This is not the first time events like these have taken place. The heartaches of death and dying are part of the human condition. These human dramas have taken place throughout history and continue right this moment in hospitals, nursing homes, and bedrooms all over the nation and the world. By one estimate, 80% of U.S. deaths occur in hospitals and long-term care facilities and 70% of those deaths (more than 1.4 million annually) are "negotiated" or "timed" in one manner or another; there are always decisions to be made which affect the process of dying.2
A few of those cases have gained national attention. In 1985, 21-year-old Karen Ann Quinlan had sedatives and alcohol at a party and fell into a persistent vegetative state. The New Jersey trial court denied the father of Karen Ann Quinlan powers of guardianship, and instead ruled that the decisions of care had to be left to the attending physician. The court also found no legal distinction between ordinary and extraordinary means of sustaining life. Ultimately, the New Jersey Supreme Court provided the father with guardianship.3
In the case of Nancy Cruzan, the United States Supreme Court finally established several legal guidelines. As the result of a car accident, Ms. Cruzan fell into a vegetative state. In the reverse of the Schiavo case, it was Ms. Cruzan's husband who consented to a feeding tube and her parents who wanted it removed.
The battle lines in that case represent rifts among courts, scientists, physicians, and religious groups that continue to exist to this day, as indicated by the passionate outcry concerning Theresa Schiavo. The groups taking sides on these matters are reflected by the amici curiae briefs submitted in Cruzan.4
While the Quinlan matter involved analysis of the refusal of medical treatment in the context of privacy rights, the legal discussion has moved on to other constitutionally protected liberties and how they are to be balanced with state interests such as establishing procedures for demonstrating one's medical directives.5
Living Wills Arrive
The concept of a "living will" was developed in 1967. The Society for the Right to Die and its sister organization, Concern for Dying, began lobbying state legislatures and courts.
Prior to Cruzan, nothing in the 52-year history of the Society for the Right to Die had generated as much public awareness. Between the Supreme Court's decision on June 25, 1990, and the death of Nancy Cruzan on December 26, 1990, the two advocacy groups had distributed more than one million advance directives.
An estimated 10% to 20% of American adults had living wills at the time of Cruzan. A more recent estimate by Kathy Brandt, who is vice president for the National Hospice and Palliative Care Organization, an advocacy group for terminally ill patients and their families, was that 25% to 40% of adults have living wills. And interest has jumped as a result of the Schiavo case. California's Medical Association reports that downloads of its advance-directive kit jumped from 350 per week to nearly 10,000 per week.
Services to provide secure storage and 24-hour-a-day access to living wills have also arisen. Since 1996, the U.S. Living Will Registry, a free service based in Westfield, New Jersey, has attracted more than 15,000 clients. Their website provides information for each of the 50 states.6
Another group, MyHealthDirective.com, provides a similar service at $2 per year for a special version of the living will entitled, Five Wishes. Since 1997, the nonprofit group Aging With Dignity has distributed more than 4.8 million copies of Five Wishes, including 250,000 in Illinois alone where hospices, physicians, attorneys, and other organizations also distribute this living will. More than 600 companies also provide employees with Five Wishes as a benefit. As a result of the Schiavo case, individual orders reportedly jumped from 600 to 6,000 in a single month. Five Wishes claims to be valid in more than 35 states.7
Thirty years after the concept was introduced, living wills had even made their way into a 1997 episode of Seinfeld. They had truly arrived.8
Perfecting The Living Will
Five Wishes focuses on naming a health care agent, types of medical treatment to use in certain situations (coma, brain death, close to death, etc.), the use of pain medication, how to treat the patient, and information and messages to loved ones. Each category has multiple options for an individual to check off.
Dr. Linda Emanuel of Massachusetts General Hospital and Dr. Ezekiel Emanuel of Harvard University presented another approach in a 1989 article in the Journal of the American Medical Association. This approach takes four situations (persistent vegetative state, coma with a chance of recovery, dementia, and dementia with terminal illness) and 13 types of treatments for each. The authors warn that the form should be completed in the context of ongoing discussions between patient and caregivers. This form contains many concepts requiring familiarity with medical terms, making it impractical for most purposes.
Another approach is the 16-page Caring Conversations, which provides information, elicits feedback, and answers common questions. This booklet is useful to laypeople but may be oversimplified and go beyond areas that, for example, an attorney may typically cover in preparing an advance directive document. The Center for Biomedical Ethics reports that downloads of Caring Conversations increased from 10 or 15 daily to 300 daily as a result of the Schiavo case.9
A Draftsman's Considerations
A professional designing a living will document must comply with state law and can utilize a variety of standard forms for this purpose. Yet personalizing a living will needs to be accomplished with the same interactive client skills and draftsmanship as a will.
A draftsman must ask the right questions to elicit a person's true intent. This may require explaining terms such as "medical directive." During this process, it is also important to keep an open mind. It should not be assumed that every individual wants a living will.
And of the people who do want a living will, it should not be assumed that everyone wants his or her life to the governed in exactly the same manner. A person may want medical treatment to be withheld, but only in circumstances where an agent can evaluate the withholding of treatment in light of the precepts of a particular religion.
WHILE WE'RE ALL HERE: There is a certain estate planning practitioner who has offered living wills for free whenever anyone is executing a will.
His philosophy is simple. People may not recognize how important a living will really is and may not seek the document or have any inclination to pay separately for it. But the most convenient time to secure this important document is right before or after the execution of the will. The testator is already in the mindset of planning for the end of life and is considering the choice of people to serve in various fiduciary capacities.
When the will is actually executed, the testator, the witnesses, and the notary are already present and another document can be signed in just a few minutes. Then, when the client is provided with copies of the will and living will, it will be convenient to store the originals in a safe place and distribute copies, which in many cases will mean sending the wills and livings wills to the same family members and professionals.
But are living wills effective by themselves? In a recent survey of 117 physicians in California, two-thirds indicated they would ignore living wills in certain circumstances.10
As a result, a power of attorney for health care can be far more important and reliable to have than any advance directive. A predesignated decision maker who can intervene on behalf of a non-communicative patient and act as his or her guardian is extremely valuable. Many current forms combine the power of attorney for health care within the body of the living will.
EXECUTION FORMALITY: Living wills are valid in some states if witnessed by two competent witnesses. Execution in front of a notary may be an accepted procedure in other jurisdictions. But there are several reasons to consider going beyond the bare minimum of compliance.
A living will may meet current statutory requirements but fail to meet newer standards that could be enacted in reaction to the Schiavo case.
An individual may be hospitalized in a jurisdiction other than his or her home state. People also change domiciles.
If the living will is challenged by a hospital, it will have to withstand great scrutiny, and the availability of witnesses may be a problem. If the execution of the document is definitive and beyond question, delays and uncertainty can be avoided.
Family peace of mind should be incentive enough to make sure there is no question as to intent or the validity of the execution.
TECHNICAL REFERENCES
1. A helpful overview is, "Preparing for the End," by Glenn Ruffenach
of The Wall Street Journal (March 27, 2005) (revisiting his previous article of July 11, 2004).
2. Collins and Weber, The Complete Guide to Living Wills, Bantam Books (1991).
3. In re Quinlan, 355 A.2d NJ 647 (1976). After Ms. Quinlan was removed from a mechanical breathing apparatus, she continued to breath on her own for 10 years. She died in 1985.
4. Cruzan v. Director, MDH, 497 U.S. 261 (1990). Briefs of amici curiae urging reversal were filed for the AIDS Civil Rights Project, the American Academy of Neurology, the American College of Physicians, the American Geriatrics Society, the American Hospital Association, the American Medical Association, the Colorado Medical Society, Concern for Dying, the Evangelical Lutheran Church in America, the United Methodist Church, Missouri Hospitals, the National Hospice Organization, the National Academy of Elder Law Attorneys, the Society of Critical Care Medicine, the Society for the Right to Die, Inc., Wisconsin Bioethicists, Barbara Burgoon, and John E. McConnell. Briefs of amici curiae urging affirmance were filed for Agudath Israel of America, the American Academy of Medical Ethics, the Association of American Physicians and Surgeons, the Association for Retarded Citizens of the United States et al., the Catholic Lawyers Guild of the Archdiocese of Boston, Inc., the District Attorney of Milwaukee County, Wisconsin, Doctors for Life et al., Families for Life, Focus on the Family, Free Speech Advocates, the International Anti-Euthanasia Task Force, the Knights of Columbus, the National Right to Life Committee, Inc., for the New Jersey Right to Life Committee, Inc., the Rutherford Institute, the United States Catholic Conference, the Value of Life Committee, Inc., and Elizabeth Sadowski. Neutral briefs of amici curiae were also filed for the American Nurses Association and for SSM Health Care System.
5. Head notes in Cruzan summarized state law precedents: "(a) Most state courts have based a right to refuse treatment on the common law right to informed consent, see, e.g., In re Storar, 52 N.Y.2d 363, 438 N.Y.S. 2d 266, 420 N.E.2d 64, or on both that right and a constitutional privacy right, see, e.g., Superintendent of Belchertown State School v. Saikewicz, 373 Mass. 728, 370 N.E.2d 417. In addition to relying on state constitutions and the common law, state courts have also turned to state statutes for guidance, see, e.g., Conservatorship of Drabick, 200 Cal.App.3d 185, 245 Cal.Rptr. 840. However, these sources are not available to this Court, where the question is simply whether the Federal Constitution prohibits Missouri from choosing the rule of law which it did. Pp. 269-278. (b) A competent person has a liberty interest under the Due Process Clause in refusing unwanted medical treatment. Cf., e.g., Jacobson v. Massachusetts, 197 U.S. 11, 24-30. * * * "
6. See, http://www.uslivingwillregisgtry.com/forms.shtm, and https://www.legaldocs.com /htmdocs/livin_st.htm. In the past, comparable material for the 50 states had been on the Choice in Dying website. That website was purchased by an unrelated organization and Choice in Dying is now known as Partnership for Caring, Box 97290, Washington, DC 20077-7205, (800) 989-9455, http://www.healthfinder.gov/orgs/HR0659.htm.
7. Five Wishes is supposed to be valid in Alaska, Arizona, Arkansas, California, Colorado, Connecticut, Delaware, District of Columbia, Florida, Georgia, Hawaii, Idaho, Illinois, Iowa, Louisiana, Maine, Maryland, Massachusetts, Michigan, Minnesota, Mississippi, Missouri, Montana, Nebraska, New Jersey, New Mexico, New York, North Carolina, North Dakota, Pennsylvania, Rhode Island, South Dakota, Tennessee, Virginia, Washington, West Virginia, and Wyoming. The other states require a specific pre-approved form.
8. Seinfeld Episode #147, originally airing January 30, 1997: Kramer and Elaine visit an attorney (played by Ben Stein) to discuss living wills. "ATTORNEY: Situation number four. You're breathing on your own, you're conscious, but with no muscular function. KRAMER: Well, would I be able to communicate? ATTORNEY: I don't see how. ELAINE: Ach, I don't like the sound of this one. KRAMER: Huhh, yeah, let's pull the cord. ELAINE: Yank it like (pops open soda can) you're starting a mower. ATTORNEY: Moving on. You have liver, kidneys and gall bladder, but no central nervous system. Kramer looks at Elaine, who gives a double thumbs-down. KRAMER: Well, I gotta have a central nervous system. ATTORNEY: Okay. One lung, blind and you're eating through a tube. KRAMER: Naw, that's not my style. ELAINE: Bore-ing. ATTORNEY: Alright, you can eat. But machines do everything else. KRAMER: (hesitant) Uhm… Kramer looks to Elaine, who nods. ELAINE: I'd stick. KRAMER: Yeah, yeah. Stick. (to Elaine) 'Cos I could still go to the coffee shop."
9. Caring Conversations is a 16-page workbook designed to explore an individual's personal values and feelings. It is produced by the Center for Practical Bioethics and is available online at http://www.midbio.org/mbc-cc.htm. The Center is located at Town Pavilion, 1100 Walnut Street, Suite 2900, Kansas City, MO 64106-2197, 800/344-3829, 816/221-1100, fax: 816/221-2002, bioethic@midbio.org, http://www.midbio.org.
10. Jerry L. Pettis Memorial Veterans Affairs Medical Center and Loma Linda University School of Medicine in California conducted the survey.
|
Download Acrobat Reader