Fall 2003 Newsletter
ADVANCE MEDICAL DIRECTIVES: KEEPING YOUR CLIENT IN THE DRIVER'S SEAT
by Victoria J. Roberson
Advance medical directives have become a staple element of any complete estate plan for most estate planning attorneys. The widely accepted premise supporting the use of advance medical directives is that a completely competent and conscious person should be able to make their own decisions concerning medical treatment, including the ability to refuse medical treatment in order to die with dignity. An advance medical directive allows an individual to express his or her desires about health-care decisions, and to designate an agent to speak for the individual, in the event the individual becomes incapacitated or terminally ill and unable to speak for himself or herself.
The standard "form" advance medical directive does little to assist a named health care agent in ascertaining the client's individual thoughts or wishes. Zealous representation of the client may require that the estate planning practitioner do more to ensure that a client's wishes are understood and carried out. This article will summarize the current state of the law in Virginia concerning advance medical directives and related topics and offer suggestions for improving or expanding the use of advance medical directives in an estate planning practice.
Communication is Critical
The Real Property, Probate and Trust Section of the American Bar Association recently published a symposium of articles dealing with advance medical directives, including their common law history and origin. 1 The articles illustrate the inherent difficulty in discerning a person's wishes in the innumerable medical contexts that may arise. It suggests that when a patient's previously expressed desires are not known or may have changed since they were last expressed, the substituted decision-makers should consider the individual's "belief system, including religious orientation and cultural or ethnic background," while providing "care consistent with the general ethical principles of medical practice, including autonomy of the individual, nonmaleficence, beneficence, and justice."2 This is a tall order for even the best-intentioned agent.
Therefore, clients should be encouraged to communicate to their designated agents as much information as possible concerning both the kinds of decisions they want made and the circumstances under which those decisions should be made.3 The topics of incapacity, death, and dying are difficult for most people to discuss, however. In addition, verbal communication can be less than reliable due to human fallibility such as misinterpretation, forgetfulness, or the imposition of one's own values and viewpoints during any decision-making process, let alone the opportunity for fraud or abuse. For these and other reasons,4 a written advance directive made by the client is usually preferable.
Even if a client executes a written advance medical directive, the natural tendency of many clients is to keep the details of their estate planning documents private. In the case of advance medical directives, however, it is essential that clients disclose the existence of the document to their family and physicians. In addition to the written directive, clients should still talk with their appointed agent and family members so that they understand the client's wishes and the choices made in the advance directive.
The Attorney's Role
Clearly, the lawyer's role in representing clients in connection with their advance medical directive extends beyond filling in a name and executing the document. But, providing more assistance can be difficult for several reasons. The lawyer may lack the practical experience and medical background to effectively answer client questions on how the directive will be received or used. Sometimes the more clients discuss the advance medical directive and all its choices, the more confused they become and, ultimately, the less likely they are to execute a document at all. Furthermore, clients often find the estate planning discussion to be an overwhelming amount of information even without a detailed discussion of the advance medical directive.5 Engaging in lengthy discussions with their attorney concerning the advance directive may also be cost-prohibitive to clients. Finally, even if the attorney has discussed the advance medical directive fully with the clients and drafted and executed a complete document, when actually faced with the decision of living with a diminished capacity or dying, the clients may change their minds.
Given these constraints, the attorney may have to limit himself or herself to preparing and executing the most complete advance medical directive possible, given the client's current circumstances and desires.6 The attorney should also then provide the client with the information and resources to more fully educate themselves on the legal and medical aspects of the topic and to better communicate their philosophical, religious, and cultural needs to their appointed agent. Good representation begins with the written document itself.
Virginia's advance medical directive is a combination of a living will and health care power of attorney.7 Section 54.1-2983 of the Code of Virginia outlines the procedure by which a competent adult may make a written advance directive authorizing the providing, withholding, or withdrawal of life-prolonging procedures and appointing an agent to make health care decisions for the individual if he or she should be declared incapable of making an informed decision.8 The statute provides that a written advance medical directive is to be signed by the client and two witnesses. Any competent adult who has been diagnosed with a terminal condition may also make a valid oral advance directive if made in the presence of the attending physician and two witnesses.9 It is important to communicate this latter point to the clients as their decisions about . treatment may change when faced with an actual illness. 10
Section 54.1-2984 of the Code of Virginia sets out the suggested form of the advance medical directive. The statute contemplates not only withholding or withdrawing treatment, but also specifically requiring certain procedures or treatments, such as the administration of hydration and nutrition. 11 Exhibit A of this article contains all the elements of the statutory form, with additional suggested options inserted as more fully discussed in the following paragraphs.12 The form is a starting point for practitioners and should be revised to facilitate individual attorney's preferences and practice.
The first augmentation to the statutory form involves defining under what conditions the client may want the living will portion of the advance medical directive invoked. In other words, under what circumstances does the client want treatment withheld or withdrawn? Relying on the phrase "terminal condition" is somewhat vague and does not necessarily include the condition of being in a persistent coma. Most clients agree that if there is no possibility of return to a cognitive life, they would want to refuse life sustaining treatment so this is a common addition to the statutory form. 13
Further definition may also be needed in the form to identify what kind of treatment the client considers "life sustaining" and wants to refuse. 14 The client may want to limit the refused treatment to respirators or feeding tubes, but may not consider cardiac resuscitation or experimental drugs as being "life-sustaining." As a patient's condition deteriorates, he or she may want to forego additional tests or surgery that he or she did not consider life sustaining earlier on. An option that clients may feel particularly strong about is the administration of nutrition and hydration, so a specific paragraph addressing the issue should be included. 15 These options defining the type of treatment to be refused should be discussed with clients, even though they may decide to leave such particulars to an appointed agent.
Another situation that calls for special discussion is whether a female client of childbearing age would still want the treatment refused if she were pregnant, especially considering certain religions' positions on that issue. If a client decides not to refuse treatment during the course of a pregnancy, she will also want to specify that her instructions on that issue control any conflict between her living will portion and instructions her agent may give. In any event, a provision stating how to resolve such conflicts should be added to the statutory form. 16
Finally, a common addition to the statutory form involves expanding the agent's authority to issue a "Do Not Resuscitate Order" and an "Emergency Medical Services Do Not Resuscitate Order."
Selecting an Agent
Equally as important as the living will portion of the advance directive is the appointment of a health care agent to make health care decisions for the client whenever he or she is "incapable of making an informed decision" about medical treatment.17 There are alternative procedures for employing substituted decision-makers,18 but these alternatives do not allow the client to name the person of his or her choosing. Furthermore, the potential for litigation or other court involvement increases, and if court involvement is required, the cost to the client increases significantly.
Clients may need some direction as to the selection of an agent. The agent must first meet the legal criteria for serving as an agent. He or she must be over 18 and should not be the client's medical or nursing care provider or the client's employee, unless he or she is also a family member. The agent should be able to be a strong advocate for the client in the face of an uncooperative or re1uctant doctor,19or disagreeing family members. The client should ask the intended agent if he or she is willing to serve before naming him or her and then notify him or her when the document is signed. The client should provide a copy of the executed document to the agent that is stamped with the location of the originals, and be sure that the agent has access to that storage location. Most important, the agent should be someone who knows the client well and can be trusted to carry out the individual's wishes. A single agent should be named to avoid conflicts or disagreements between multiple agents, but a successor agent is recommended. If the client must name more than one person serving together, as in the case of someone with two children who does not want to differentiate between them, the appointment should speak to who has final control in the event of a disagreement.
Organ, Tissue, or Eye Donations
The attorney questionnaire, or discussion, should also ascertain if the client wishes to make any organ, tissue, or eye donations, or a gift of the client's entire body for research. Section 32.1-290 of the Code of Virginia specifically authorizes anatomical gift or organ donations by individuals. The individual must be competent and over 18 years of age (or under 18 with written consent of his or her parents).20 The gift may be made by 1) a written document of gift signed by the donor;21 2) designation on the driver's license or driving record;22 3) a will;23 or 4) an advance medical directive.
A donor may amend or revoke an anatomical gift by (1) a signed written statement, (2) an oral statement made in the presence of two individuals, (3) any form of communication during a terminal illness or injury, (4) the delivery of a signed statement to a specified donee to whom a document of gift has been delivered, or (5) revocation in compliance with other applicable law,24 including revocation of the advance medical directive. If the gift is made under a will, it may be amended or revoked in the same manner a will may be amended or revoked. If an individual has not specified whether he or she wants to make anatomical gifts, Section 32.1290.1 of the Code of Virginia authorizes certain persons to make anatomical gifts of all or part of a decedent's body, unless the decedent had made an unrevoked refusal to make that anatomical gift.25 Alternatively, the statute also allows an individual to appoint the person he or she would want to make anatomical. gifts for him or her and states that such agent may be appointed in a will or in an advance medical directive.26 As is the case with agents named under the advance medical directive, clients should designate their own agent if the priority established in the statute is not appropriate in their case, such as persons who are estranged from their spouse or family members, clients with multiple persons in the same class who may not agree, or unmarried clients who want their partner to have priority over family members.
The clients may already have the designation as an organ donor on their driver's license27 or may carry an organ donor card in their wallet.28 This decision should also be reflected on their written advance medical directive, however, in more detail. Several significant issues arise in this area. Clients may wish to affirmatively refuse making such gifts if they understand that someone else can make such gifts for them if they have remained silent on the issue. Some clients are donors, but specifically want to limit the gifts to organs or eyes, for example, and do not want a cadaver donated because it is recognizable. Clients may want to specify that gifts are to be made only for research, or only for the benefit of other living persons. Most importantly, the clients may want to specifically designate the recipient or donee of their gift if they have a family member or loved one who is in need of a transplant or other medical crisis.
The statutory form of advance medical directive contains optional language concerning making· organ donations and naming an agent to authorize such donations. It also leaves a blank space for the individual's specific instructions concerning gifts or limits he or she may want to place on gifts. The practitioner may need to expand on the statutory form, however, to address the issues outlined above and to conform more closely to the client's intentions.29
Prerequisites For Cremation
Section 54.1-2818.1 of the Code of Virginia provides that no decedent's body shall be cremated without permission of the medical examiner and either (i) visual identification of the deceased by the next of kin or the deceased's representative who may be any person designated to make arrangements for the decedent's burial or the disposition of his or her remains pursuant to Section 54.1-2825 of the Code, or an agent named in an advance directive pursuant to Section 54.12984, or (ii) a 24 hour waiting period between the time of death and the cremation. The advance medical directive may therefore also identify who is to identify the body before cremation.
Agent to Make Arrangements for Disposition of Remains
An individual may also designate the person who is to make arrangements for his or her burial or the disposition of his remains, including cremation remains, following his or her death. The designation must be in a notarized writing signed by the individual that has also been accepted in writing by the person so designated.30 Again, for clients for whom the "next of kin" is not a suitable arrangement, or in cases where there is the potential for disagreement in carrying out the client's wishes, a designation of who is to be in charge can be invaluable.
If this designation is added to the body of the advance medical directive, the document will have to be notarized, and the agent so designated will have to sign the advance medical directive. While this presents some additional logistics to be worked out, it may be preferable to include it in the advance medical directive because clients tend to think of the advance medical directive as addressing all end-of-life issues. It also ensures that the agent is now aware of the existence of the advance medical directive and presents an opportunity for the client to discuss it with his or her agent. Finally, notarizing the client's signature may prove to be valuable if the client is attempting to use the advance medical directive while traveling in another state which requires notarization. Some clients may prefer, however, to designate this agent in a separate writing, if at all.
Revoking the Advance Medical Directive
An executed advance medical directive may be revoked by the client at any time by (1) a signed, dated writing; (2) physical cancellation or destruction of the advance directive by the client or by another person in the client's presence and at the client's direction; or (3) by an oral expression of intent to revoke. The revocation is effective when communicated to the client's attending physician.31
Even the most complete advance medical directive cannot, and should not address, every possible situation. Rather, the designated agent needs the discretion and flexibility to make health care decisions in response to the client's changing circumstances or condition. At this point, however, it is critical that the agent have as much direction as possible as to the clients' wishes, taking into consideration their medical, personal, emotional, spiritual, and cultural needs. While it is impractical for the attorney to become overly involved in this process, he or she should at least educate clients as to the existence of additional resources available to the clients to help them give more guidance to their agent. Any search of the internet will result in a myriad of options, but there are two resources that are developing some widespread support. The first is known as Five Wishes.32 Five Wishes is a questionnaire that assists people in making essential decisions about the care they want at the end of their life. It is legally valid in 35 states and the District of Columbia. The document was designed by Jim Towey, founder of Aging with Dignity, a nonprofit organization that advocates for the needs of elders and their caregivers. The "five wishes" are:
• Who do I want to make care decisions for me when I can't?
• What kind of medical treatment do I want toward the end?
• What would help me feel comfortable while I am dying?
• How do I want people to treat me?
• What do I want my loved ones to know about me and my feelings after I'm gone?
The questionnaire provides various medical and treatment scenarios in greater detail and allows the clients to select from the various responses, or write in more wishes of their own. Another very good resource is the booklet prepared by the American Bar Association, Commission on Law and Aging.33 This booklet includes assistance to the client in selecting an agent, identifying treatment preferences, personal priorities, spiritual values, organ donation, and burial or cremation instructions, as well as practical suggestions for the use and storage of the advance medical directive. There are conversation scripts that help facilitate discussions between the client and his or her agent, including a survey for the agent to test how well he or she understands the individual's wishes. Finally, the materials provide a guide to the agent outlining his or her duties and the steps to follow to make medical decisions for others.
These types of materials can help ensure that the client has given adequate thought to the issues involved and adequate guidance to their substituted decision-makers. They can also help attorneys avoid a lengthy, inefficient, and expensive discussion with clients while still providing good service and representation.
The perfunctory use of the statutory form of advance medical directive falls short of what can be considered zealous representation of the client, and may even rise to the level of malpractice. But it is not practical, profitable, or even feasible to assume the estate planning practitioner can anticipate or address every issue associated with an advance medical directive. The following steps may help attorneys ensure that their discussions with the clients and the resulting advance medical directive more closely address each client's individual needs:
• Revise the client questionnaire to ask more questions about the advance medical directive options and continue information gathering during the initial client visit.
• Begin with an advance medical form that that has been expanded from the statutory form to adequately address all of the clients' options for advance decision making, including decisions regarding the refusal of treatment, appointment of agents, anatomical gifts, cremation, and burial instructions.
• Instruct clients as to the importance of communicating their desires by talking to their family, their physicians, and their agents and keeping their advance medical directive close at hand.
• Make available to the clients the applicable statutes concerning end of life decisions and statutes referenced within the advance medical directive itself.34
• Compile a list of resources for clients who want to learn more in order to make more informed decisions concerning their advance directive.35
• Provide clients with, or refer them to, an optional document that will more fully communicate their treatment decisions and wishes to their agents based on their moral, religious, cultural, or other concems.36
In these ways, attorneys can more effectively assist their clients in finalizing this most personal, important, and often overlooked part of their estate planning project.
Suggested format of Advance Medical Directive (.pdf)
LIST OF AVAILABLE RESOURCES CONCERNING ADVANCE MEDICAL DIRECTIVES AND END OF LIFE DECISION MAKING
1. Virginia Department for the Aging, 1600 Forest Avenue, Suite 102, Richmond, Virginia 23229, 1-800-552-3402.
2 Virginia State Bar, 707 E. Main Street, Suite 1500, Richmond, Virginia, 23219-2800, (804) 775-0500.
3. Five Wishes, Aging with Dignity, P.O. Box 1661, Tallahassee, Florida 32302-1660, 1-888594- 7437.
4. American Bar Association, Contains an excellent printable resource developed by the Commission on Law and Aging to provide directly to clients.
5. Partnership for Caring, Includes '''Frequently Asked Questions" and state specific forms.
6. American Association of Retired Persons
Victoria J. Roberson, of Victoria J Roberson, PLC, is a sole practitioner in Midlothian, Virginia whose practice focuses on estate planning and estate administration. Ms. Roberson earned her B.A. in education from Westminster College in Pennsylvania and her JD. from Wake Forest University School of Law. She currently serves on the Board of Governors for the Virginia State Bar Trust and Estates Section and is a member of the Richmond Estate Planning Council.
1 Elizabeth G. Clark, Health Care Decision-Making for Others - No Easy Answers, 37 Real Prop. Prob & Tr. J. 537 (Fall 2002); Clifton B. Kruse, Jr., A Call for New Perspectives for Living Wills (You Might Like It Here), 37 Real Prop. Prob & Tr. J. 545 (Fall 2002); Louis J. Sirico, Jr., Life and Death: Stores of A Heart Transplant Patient, 37 Real Prop. Prob & Tr. J. 553 (Fall 2002).
2 See Clark, supra note 1, at 543.
3 Id, at 549.
4 See Gilmore, et. al. v. Finn. In this highly publicized case involving then Governor James Gilmore, the wife of John Finn sought to uphold the trial court's finding that her husband was in a persistent vegetative state, and that her decision to withdraw his feeding tube, as contemplated under Va. Code § 54.1-2986, was "a medically appropriate, ethical treatment decision that is not inconsistent with Hugh Finn's personal wishes or his personal religious beliefs." Mrs. Finn testified that her husband had on several occasions orally expressed his desire not to be kept alive by artificial means, including hydration and nutrition, if there were no reasonable possibility of returning to a cognitive life. Her husband had drafted, but not executed, an advance medical directive. Michelle Finn was eventually allowed to remove the feeding tube, but only after several lawsuits, much notoriety, and approximately $42,000.00 in legal fees.
5 See Kruse, supra note 1 at 551. "In a typical estate planning engagement, the discussion of testamentary disposition provisions, tax savings techniques, and selection of fiduciaries often tests the attention span limit. Many clients would resist expanding the engagement to include an extensive living will discussion and analysis."
6 Some practitioners take a much more active role in their client's advance medical directives when circumstances call for their involvement as Agent, and their expertise in the elder law area provides a better solution for the client. See, e.g., Andrew H. Hook, Health Care Decision-Making Services: A Panel Discussion on a Profitable Practice Area (2002).
7See Va. Code §§ 54.1-2981, et. seq. (Virginia Health Care Decisions Act) (2003).
8 Va. Code § 54.1-2983.
10 See, e.g., Kruse, supra note 1; Sirico, supra note 1.
11 Va. Code § 54.1-2984 (i).
12 Special thanks to Andrew H. Hook, Esquire, Oast & Hook, P.C., P.O. Box 399, Portsmouth, VA 23705-0399, (757) 399-7506, for the suggested optional language contained in his outline. See supra note 6.
13 See Exhibit A, bolded language.
17 "Incapable of making an informed decision" within the context of the advance medical directive means unable to understand the nature, extent or probable consequences of a proposed medical decision or unable to make a rational evaluation of the risks and benefits of a proposed medical decision as compared with the risks and benefits of alternatives to that decision, or unable to communicate such understanding in any way. Va. Code §54.l-2984. See also Va. Code § 54.1-2982 for expanded definitions.
18 § 54.1-2986 of the Code of Virginia allows the following persons to authorize the withholding or withdrawal of treatment for patients incapable of making an informed decision if no advance medical directive was executed, or if the advance medical directive does not address the situation and does not appoint an agent, in the following priority:
1. Guardian or committee for the patient;
2. Spouse (except if a divorce action has been filed);
3. Adult child of the patient;
4. Parent of the patient;
5. An adult brother or sister of the patient; and
6. Any other relative of the patient in descending order of blood relationship.
The Code also provides an alternative for judicial authorization of the provision, withholding, or withdrawal of medical treatment for incapacitated persons but requires clear and convincing evidence of the patient's inability to make an informed decision and a showing that the suggested action is in the patient's best interest. See Va~ Code § 37.1134.21.
19 § 54.1-2990 of the Code of Virginia makes clear that physicians do not have to comply with the provisions of an advance directive or the instructions of an agent appointed therein if the physician determines such treatment to be medically or ethically inappropriate. If such a conflict arises and is unable to be resolved, the physician must make a reasonable effort to transfer the patient to another physician who will comply with the advance directive. See Va. Code§ 54.1-2987.
20 Individuals under 18 can refuse to make an anatomical gift without parental consent.
21 Va. Code § 32.1-290 B. A document of gift may designate a named individual or specific organ procurement program to receive the anatomical gift. Va Code § 32.1-290 C. The document of gift (or will or other written document making the gift) may be delivered to the donee but delivery is not' necessary to the validity of the gift. Va. Code § 32.1293.
22 Suspension, revocation, expiration or cancellation of a license does not automatically revoke the anatomical gift Va. Code § 32.1-290 B.
23 An anatomical gift made by will takes effect upon death, whether or not the will is probated. If the will is declared invalid for testamentary purposes, the validity of the anatomical gift remains valid. Va. Code § 32.1-290 D.
24 See Va. Code § 46.2-342 (Uniform Donor Document) and Va. Code § 54.1-2981 et. seq. (Health Care Decisions Act.).
25 Section 32.1-290.1 A of the Code of Virginia establishes the priority of individuals with the authority to make anatomical gifts on behalf of a decedent, as follows:
1. Spouse of the decedent;
2. Adult son or daughter of the decedent;
3. Either parent of the decedent;
4. Adult sibling of the decedent;
5. A grandparent of the decedent;
6. A guardian of the person of the decedent at the time of death.
26 Va. Code § 32.1-290.1 B.
27 The donor designation on a driver's license is controlling. No family member, guardian, or agent under an advance medical directive can refuse to honor or seek to avoid the donor designation on a license. Va. Code § 46.2-342 F. If the donor wishes to rescind his or her designation to be an organ donor, he or she must contact the Virginia Department of Motor Vehicles. Va. Code § 46.2-342 G.
28 The Coalition on Donations has in the past published a brochure entitled "Share Your Life... Share Your Decision" that answers many common questions about organ and tissue donation. The brochures are free and provide clients with a removable Uniform Donor Card to carry in their wallet or on their person. For more information, contact Coalition on Donations, 700 North 4th Street, Richmond, Virginia 23219, (804)782-4920; email@example.com.
29 See Exhibit A, Option concerning anatomical gifts and appointment of agent.
30 Va. Code § 54.1-2825.
31 Va. Code § 54.1-2985.
32 See <www.agingwithdignity.org> or contact Aging With Dignity, P.O. Box 1661, Tallahassee, Florida 32302-1660, (888)594-7437.
33 See <www.abanet.org/aging/toolkit/home.html>. Tools I10 created by American Bar Association, Commission on Law and Aging.
34Including Va. Code §§ 54.1-2982 -54.1-2990; Va. Code §§ 32.1-289-32.1-293; Va. Code § 37.1-63 et. seq.; Va. Code § 37.1-134.6; Va. Code § 46.2-342; Va. Code § 54.12825.
35 See Charles P. Sabatino, Ten Legal Myths About Advanced Directives, 28 Clearinghouse Rev. 653, 655 (1994); Alan Lieberson, M.D., J.D., Advance Medical Directives (2003) (Resource for physicians and other medical administrators and personnel), Practice Management Information Corporation (1993). A document created by the International Task Force on Euthanasia and Assisted Suicide known as the "Protective Medical Decisions Document" (PMDD) may be used as an addendum or alternative to the Advance Medical Directive. The PMDD defines and prohibits euthanasia for patients who want to ensure their advance directive reflects a prolife/ anti-euthanasia position. For copies, contact International Task Force on Euthanasia and Assisted Suicide, P.O. Box 760, Steubenville, OH 43952, (740) 2823810. See Exhibit B for a list of resources suitable for clients.
36 See Five Wishes Form, supra note 32; and ABA Booklet from Commission on Law and Aging, supra note 33.