Editor's Column:
Advanced Medical Directives

"Every human being of adult years and sound mind has a right to determine what shall be done with his own body." Justice Cardozo

The debate over the withdrawal of life support has been a long and costly legal and political conflict.¹ The real fight begin in the early '60s, when medicine had advanced to the stage that permanently unconscious clients could be kept alive even with little brain activity. As a result, debates began to occur about a patient's "right to die." The aging of the baby boomers and their parents is increasing the issues surrounding a client's medical decision making.

In 1976, the New Jersey Supreme Court decided In Re Quinlan.² The court decided that a heart/lung machine could be withdrawn from Karen Ann Quinlan, but required that intravenous fluids and nourishment must continue, even though Miss Quinlan had no brain activity. Although doctors had expected her to die after being taken off the heart/lung machine, she continued to breathe. She lived almost 10 more years on intravenous fluids and nourishment. Also in 1976, California became the first state to approve living wills. By 1992 all 50 states had adopted similar legislation.

In Cruzan v. Director, Missouri Dept. of Health,³ the U.S. Supreme Court acknowledged a constitutionally protected right to refuse lifesaving hydration and nutrition. The Supreme Court largely deferred to states to determine how this constitutional right would be exercised, particularly when the decision is made by surrogates or there was no written declaration. Missouri applied a "clear and convincing" evidence standard to determine whether such a refusal had been made by Nancy Cruzan. Although this evidence standard would necessitate a written medical directive in most cases, the Missouri courts found that Nancy Cruzan had made sufficient verbal declarations to permit withdrawal of nourishment. Eight years after the accident which rendered her permanently unconscious and without significant brain activity, Nancy Cruzan died.

In 1991 Congress passed The Patient Self-Determination Act,⁴ which requires health care providers (e.g., hospitals, nursing homes, hospice programs, home health care agencies and HMOs) receiving Medicaid and Medicare payments to ascertain the intent of patients about advance directives for health care and provide patients educational materials about their rights under state law.

In 1994 an Oregon referendum resulted in the adoption of a new statute, The Oregon Death with Dignity Act, Oregon Statutes section 127.800 et. seq., which permitted physician assisted suicide in certain circumstances. The implementation of the act was enjoined by the District Court in Lee. v. State of Oregon.⁵ The injunction was lifted by the Ninth Circuit Court of Appeals. Lee v. Oregon, 107 F3d 1382 (9th Cir. 1997).The plaintiff's appeal to the U.S. Supreme Court was denied.

In Compassion in Dying v. State of Washington, 79 F3d 790 (9th Cir. 1996), the Ninth Circuit Court of Appeals overturned a Washington statute which made physician assisted suicide a criminal act. The Ninth Circuit found a due process constitutional right to physician assisted suicides. One month later, in Quill v. Vacco ⁶, the Second Circuit Court of Appeals struck down a New York statute which prohibited physician assisted suicide. The Second Circuit ruled that the law violated the equal protection provisions of the U.S. Constitution.

On June 26, 1997, the U.S. Supreme Court overturned both Circuit Court decisions in Washington v. Glucksberg,⁷ and Vacco v. Quill.⁸ The U.S. Supreme Court left it up to the states to determine whether to prohibit physician assisted suicide. The Court could find no constitutional right for terminally ill patients to obtain a physician's assistance in ending their lives. The battle over physician assisted suicides has continued around the country. In 39 states, it is a criminal act to assist in any suicide.

In April 1998, President Clinton signed into law The Assisted Suicide Funding Restrictions Act of 1997, which prevents the federal governments from reimbursing costs associated with physician assisted suicide. The bill also provided for the funding of programs to reduce the rate of suicide by persons with disabilities or terminal or chronic illnesses.

As demonstrated by the Terri Schiavo debacle, the legal, medical and moral controversies over euthanasia and the right to die can be intense and conflict-laden. We as estate planning advisors have a responsibility to make sure clients have at least addressed how they want medical decisions to be made if they become incapacitated.

Most people would prefer to decide who will make medical decisions for them and, in some cases, restrict how the decisions can be made. Failing to do so breeds both additional costs and the potential for family turmoil. For example, a 1992 study in the Archives of Internal Medicine reported that having a living will or medical power of attorney saved almost $65,000 per patient in the final stay in the hospital.⁹ The average cost from 1990 through 1992 of persons without medical directives was $95,305 versus $30,478 for those who had medical directives. Since 1992 medical care costs have increased at a significant rate.

There are some traps for the unwary in this area, including:

1. Failing to Plan for the Young. Much of the focus on Advanced Medical Directives has been on the need for the elderly to plan for this incapacity. However, it is interesting that Karen Ann Quinlan, Nancy Cruzan and Terri Schiavo were all young women in their late 20s and early 30s—people who you would not expect to need an advanced medical directive. This failed assumption has proven true in my own family. In August of 2006, my twenty-year old son sustained a serious brain injury. Even though he was getting ready to go to Iraq, I had never considered the need for a Living Will or Medical Power of Attorney for him—now each of my three children have signed advanced medical directives.
2. Differences in Law. Pursuant to the Cruzan decision, Supreme Court has largely left it up to the state to determine how medical decision making will be made for incapacitated individuals. Unfortunately, the rules vary widely from state to state and clients moving from one state to another, should make sure local counsel reviews their existing documents when they change states of residence. Moreover, as shown by the article on Europe's rules on Medical Directives in this NAEPC Journal, the rules governing medical decision making vary widely throughout the world.
3. Only Having a Living Will. During the Terri Schiavo case, the media talked a lot about the need for a living will. The living will has two major flaws. First it only deals with life sustaining treatment. It does not deal with who makes other medical issues for a disabled client. Second, the final decision makers with living will are the physicians. Most clients would prefer to turn that decision process over to trusted family members or friends. The reality is that the Medical Power of Attorney or similar advanced directive is the more important document.
4. Marriage and Divorce. Some states provide that unless the power of attorney expressly provides otherwise, a subsequent marriage acts as an automatic revocation of the designation of any person to serve as power holder other than the principal's spouse.¹⁰ More problematic, is that many divorced couples fail to remove their ex-spouse from their medical power of attorney—do you really want that estranged ex-spouse to decide what pain killers you are going to receive?

It is also important for clients to leave information for family members on the types of decisions they want to be made if they become incapacitated. For example, "I want to be kept at home as long as possible." Clients may want to consider executing "ethical wills" in which they discuss their thoughts on receiving life sustaining treatment and other philosophical perspectives. Barry K. Baines, The Ethical Will: Reviving a Biblical Tradition and Applying it to Retirement Planning, Journal of Retirement Planning, June 1999. This article provides practical advice in writing an ethical will. See also, Kathleen M. Rehl, Help Your Clients Preserve Values, Tell Stories and Share the "Voice of Their Hearts" Through Ethical Wills, J. Prac.Est.Plan., July 2003; Josephine Turner, Estate Planning: Ethical Wills, found at http://edis.ifas.ufl.edu/BODY_FY536; Robert Flashman, Melissa Flashman, Libby Noble and Sam Quick, Ethical Wills: Passing on Treasures of the Heart, found at www.ces.ncsu.edu/depts/fcs/pub/1998/wills.html.

ADDITIONAL RESOURCES

Books On Medical Decision Making

• Living Wills Made E-Z: Includes Power of Attorney for Healthcare (Made Ez Products, 2001)
• Kessler, David, The Needs of the Dying (Quill 2000)
• Kuhl, David, What Dying People Want (Public Affairs 2003)
• Lieberson, Alan D., Advance Medical Directives (West 2004)
• Meisel, Alan and Cerminara, Kathy L., The Right To Die (Aspen Publishers 2003).
• William Molloy, Let Me Decide: The Health and Personal Care Directive That Speaks for You When You Can't (Biblio Distribution 2003)

Websites On Aging And Critical Care Issues

• www.critical-conditions.org
• www.abanet.org/aging/toolkit/
• www.ama-assn.org/public/booklets/livgwill.htm
• www.help4srs.com
• www.mag.org
• www.nolo.com
• www.caregiver.org

Internet Resources For The Elderly

• www.aoa.gov—The federal government's Agency on Aging
• www.eldercare.gov—a website of the Agency on Aging
• www.medicare.gov—the national website for Medicare
• www.cms.gov—The government's center for both Medicare and Medicaid advice
• www.socialsecurity.gov—the Social Security website
• www.aarp.org—American Association of Retired Persons website
• www.caremanager.org—a helpful website on care giver resources
• www.nia.nih.gov—providing information on gerontology

Articles Discussing the Moral, Ethical and Religious Issues of Medical Directives

• Rabbi Yitchok Breitowitz, The Right to Die: A Halachic Approach

Notes