Lessons From the Case of Terri Shiavo

The case of Terri Shiavo has occupied most of the media's attention in recent weeks. Terri has been in a persistent vegetative state, and her parents and her husband have disagreed on whether her feeding tube should be removed. The case has been in the state court system for years, and it has been in the federal court system this week. Reasonable people can disagree on whether Ms. Shiavo's parents or her husband have the better argument or point of view. What all can agree upon, however, is that similar situations can be avoided with advance planning and discussion with family members.

Although court-appointed guardians can usually make healthcare decisions, including end-of-life decisions, an individual is far better served by executing an advance directive which can be in the form of a living will, medical power of attorney or a combination of these documents. A living will is an expression of how the individual wants to be treated during end-of-life care. The medical power of attorney is a delegation of authority to a third party to make healthcare decisions for the individual when the individual is unable to do so. All 50 states and the District of Columbia impose statutory requirements on the content and execution of these documents for them to be valid.

Should an individual use a medical power of attorney or living will? Some claim that the use of living wills is a failure because individuals lack the knowledge to make intelligent decisions in advance, and so their preferences are not adequately articulated in the living will. Others note that too often living wills are not accepted by third parties. A few states do not recognize living wills; in those states a living will is treated as a statement of the individual's values. For individuals who have known existing conditions and strong preferences about the treatment of these conditions, Oast & Hook recommends a combination of a living will and medical power of attorney; we call this document an advance directive. The living will needs to state the individual's preferences and the medical power of attorney needs to appoint an agent, and a successor agent, and authorize the agent to implement the individual's preferences.

When Elder Law attorneys draft an advance directive, they should start with the state statutory form because it should be recognized by healthcare practitioners in that state. Then they should customize the statutory form to address the client's particular concerns by asking the client to focus on his or her medical treatment preferences. Oast & Hook asks its clients to consider:

• Who will serve as the healthcare agent and successor agent? If co-agents are appointed, must they act jointly or may they act independently?
• If the client has identified one or more people in the family who do not share the client's values, does the client want to expressly deny those people the authority to make healthcare decisions for the client?
• Under what conditions, if any, does the client want to authorize the withdrawal of life-sustaining medical treatment?
• Does the client's authorization to withhold or withdraw lifesustaining medical treatment extend to artificial nutrition or hydration (feeding tube)?
• Does the client have a known physical ailment that should be described along with the treatments that the client wants or rejects?
• Does the client have any specific preferences concerning healthcare facilities or providers?
• Does the client have any moral or religious convictions that dictate the use or rejection of certain forms of medical treatment?
• Does the client want to make anatomical gifts (organ donation) or give the agent the power and authority to make these gifts?
• Does the client want to authorize the agent to determine who will visit the client?
• Does the client want to obtain physician assistance with dying to the extent compatible with state law?

In light of the privacy rules in the Health Insurance Portability and Accountability Act of 1996 (HIPPA) and related regulations, the advance directive should also include a specific, immediate authorization under HIPPA for the client's healthcare agent to obtain confidential information concerning the client's mental and physical condition. This will allow the agent to talk with the client's physicians and review the client's medical records. Although many clients are accompanied by their children to routine medical appointments, in an emergency situation, the children need to know that they will be able to talk with the treating medical professionals about their parent's condition.

The Elder Law attorney should discuss with the client how to make the existence of the client's advance directive known to the client's family and physicians. At a minimum, the client should have a candid and frank discussion of the advance directive and the client's healthcare preferences with the client's immediate family, healthcare agents and primary care physician and provide each of them with a copy of the advance directive. To assist the client in initiating this discussion, the attorney may offer to mail a copy of the advance directive to the client's family, physician and healthcare agent. Where the client is having a difficult time discussing his healthcare with his or her family, then the attorney may want to provide the client with a copy of the Long Good Bye: The Deaths of Nancy Cruzan.

The book is an excellent tool to demonstrate the importance of having an advance directive and it will facilitate intra-family discussions of the client's desires. The client should have a copy of the advance directive available at home along with any other information that emergency personnel may need to have.

Some attorneys may provide each of their clients with a laminated wallet card that informs third parties of the existence of the client's advance directive and the names and telephone numbers of the client's healthcare agents. The attorney may also want to advise the client about commercial advance directive registries that store the client's advance directive and, if the client is hospitalized, fax a copy of the advance directive to the hospital. As part of the estate planning services provided by the attorney, some members of the National Academy of Elder Law Attorneys (NAELA) are obtaining discounts for these services through the NAELA Affinity Program and providing their clients with a subscription to one of these services.

Reprinted with permission from Oast & Hook, www.oasthook.com, Elder Law News, March 25, 2005.