Few news stories about the life of one person and one family have received greater public attention and scrutiny, and generated more discussion, than the recent chronicles of the life and death of Terri Schiavo. While her case was making its Sinai-like way through the courts and legislative bodies, discussions concerning the case swirled around water coolers, coffee houses, and chat rooms. While one could debate the benefit of what was no doubt often heated discussion, it is clear that the case increased public awareness of end-of-life issues and highlighted the need for end of life planning.
During the weeks leading up to Terri Schiavo’s death – and since then – my clients and I have focused a greater portion of our meetings on the subject of Advance Directives for Health Care and end-of-life issues that had previously been the case. The Schiavo case has heightened our clients’ concerns that their wishes will be both known and honored, and has increased awareness of the need to memorialize end-of-life decisions.
The term “living will” is often used to describe the instrument by which a client expresses his or her wishes for the end-of-life, but the instrument is more properly referred to as an “Advance Directive for Health Care.” Some attorneys prepare two instruments, an Advance Directive, and a health care power of attorney. In Pennsylvania, the rules governing Advance Directives for healthcare are set forth in the Advance Directive for Health Care Act which became effective in 1992 and is codified in 20 Pa. C.., Chapter 54. The Act became law in the aftermath of the U.S. Supreme Court’s decision in Cruzan v. Director, Missouri Dept. of Health, 497 U.S. 261 (1990), in which the Court found a due process liberty interest to refuse unwanted medical treatment. The Act must be read in conjunction with the federal Health Insurance Portability and Accountability Act of 1996 (“HIPAA”), which deals with privacy issues in health care.
The Act states as a legislative finding that competent adults have the right to control their own medical care and that the state has an interest in maintaining the standards of the medical profession and in preserving human life. Nothing in the Act is to be construed to condone mercy killing, euthanasia and aided suicide.
The Act authorizes an individual who it at least 18-years-old, or who has graduated from high school, or has married, to executive a declaration “governing the initiation, continuation, withholding or withdrawal of life-sustaining treatment.” The declaration becomes operative when a copy is provided to the declarant’s attending physician and the declarant is determined by the attending physician to be incompetent and in a terminal condition or in a state of permanent unconsciousness. Those terms are defined in the Act. Once the declaration is operative, the attending physician and other health care providers must comply with it or, if they cannot, must transfer the declarant to another physician or health care provider who can.
The form Advance Directive for Health Care provided in the Act directs that at such time as the declaration becomes operative, the attending physician is to withhold or withdraw life-sustaining treatment that serves only to prolong the process of dying, and that under those circumstances, treatment is to be limited to measures to keep the declarant comfortable. The form declaration provides a list of the forms of treatment that, if checked-off, are specifically to be withheld or withdrawn under those circumstances. The forms of treatment include cardiac resuscitation, mechanical respiration, tube feeding or other artificial or invasive forms of nutrition or hydration, surgery and antibiotics.
The form also includes a place to insert the name of the health care surrogate who is designated to make medical decisions under circumstances that the Advance Directive applies. Although the form of Advance Directive provided by statute gives the surrogate authority only in circumstances where the client is incompetent and either terminally ill or in a state of permanent unconsciousness, an Advance Directive could be written, or a separate document (typically called a Health Care Power of Attorney) could be prepared, to allow the surrogate to make decisions under circumstances where the declarant’s life is not in jeopardy and the declarant is not in a coma.
It is important that the instrument by which a surrogate is appointed make it clear that the surrogate is a “personal representative” under HIPAA and that the instrument in other respects complies with HIPAA. Finally, the form Advance Directive contained in the Act includes a check-off box in which the declarant is to indicate whether he or she wants to make anatomical gifts.
The Advance Directive must be signed by the declarant or by another on behalf of and at the direction of the declarant and must be witnesses by two individuals, each of whom is 18 years of age or older. After the Advance Directive is signed, a copy should be sent to the declarant’s primary health care physician and to the hospital where the client is most likely to be taken to in the event of an emergency. Some clients carry copies of their Advance Directives with them when they travel.
Laws relating to end-of-life issues vary dramatically by state. Clients who are not residents of Pennsylvania or who spend significant time in other states should have an Advance Directive drawn by a lawyer who practices in those states. There are numerous forms of Advance Directives that lawyers use and which medical, religious, advocacy, educational and other groups make available to their constituency or to the public. For example, the Web site for the American Association of Retired Persons, www.aarp.org, has a section dedicated to Advance Directives which provides sample forms. As would be expected, some religious organizations also have their own forms. A traditional Jewish form of Advance Directive can be found here.
Advance Directives should be offered to clients as part of every estate plan, and end-of-life issues should be discussed with the client. When meeting with clients, I explain that the purpose of an Advance Directive is not just to attempt to assure that the client’s wishes are honored, but to minimize the burden of making challenging and emotional end-of-life decisions. The Act is clear that the declarant is the one making the decision, not the surrogate. However, the client must also understand that in addressing end-of-life issues, he or she cannot anticipate every situation or contemplate with any certainty what forms of medical treatment will be available at such time as the Advance Directive is implemented. Also, while the Act, and often Advance Directives themselves, provide definitions for terms like “incompetent,” “terminal condition,” and “permanent unconsciousness,” those definitions are not and cannot be crystal clear. Typically, therefore, the surrogate will be put in the position of having to make the ultimate decision, guided by the Advance Directive. The choice of a surrogate is therefore crucial.
My experience is that married couples normally designate each other as surrogates, although sometimes that is not the case when there are adult children from a prior marriage. I typically urge clients to consider that the surrogate must be able to honor and implement the Advance Directive and be in a position – at a trying and extremely emotion-laden time – to communicate effectively with family and physicians and other health care providers. While the Advance Directive is designed in part to relieve the guilt a surrogate may experience after signing a “do not resuscitate” order or otherwise after implementing an Advance Directive, the surrogate must be someone who can cope with those feelings and be able to interact with family members after the client’s death.
Many clients choose multiple surrogates so that the burden of serving in that capacity is shared. When there are multiple surrogates, it is important that the Advance Directive make clear whether all surrogates must agree on a decision or, if unanimity is not requires, how many “votes” are required to make a decision final.
Many clients delay doing their estate planning because they are uncomfortable with the subject of death, especially their own death. In my experience, the Advance Directive is the document that causes the greatest discomfort. With increasing frequency, clients relate stories of family members for whom they were asked to make end-of-life decisions and the memory of those events haunt them as they contemplate their own mortality. With the Advance Directive more than perhaps any other estate planning document, it is crucial that the client have the opportunity to review a draft of the document well in advance of executing it and to discuss the document with family, friends and advisors.
AUTHOR BIO: Mr. Vegderman is a partner in, and chair of, the Trusts and Estates Section at Montgomery, McCracken, Walker & Rhoads, LLP. Admitted to practice in Pennsylvania and New Jersey, Mr. Vigderman concentrates his practice in and lectures frequently in the areas of estate planning and administration. He received his LL.M. in Taxation from Temple University School of Law, a J.D. from The George Washington University and a B.A. from Haverford College. Mr. Vegderman may be reached at email@example.com.