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Advance Directives A Community Education Workshop Guide Prepared November 1995 Sponsoring Organizations Listed Inside Prepared Nationally By: American Association of Retired Persons American Bar Association/Commission on Legal Problems of the Elderly American Hospital Association American Medical Association The Catholic Health Association Legal Counsel for the Elderly, Inc. Voluntary Hospitals of America, Inc. Revised and Sponsored in Pennsylvania By: American Association of Retired Persons-Pennsylvania Chapter Delaware Val ley Hospital Counci I Hospice of Central Pennsylvania The Hospital Association of Pennsylvania Hospital Council of Western Pennsylvania Pennsylvania Academy of Family Physicians Pennsylvania Association of Home Health Agencies Pennsylvania Association of Nonprofit Homes for the Aging Pennsylvania Bar Association Pennsylvania Council of Churches Pennsylvania Department of Aging Pennsylvania Health Care Association Pennsy Ivan ia Medical Society Cover Photo Courtesy Of: Holy Spirit Hospital, Camp Hill, Pa. How to Use This Workshop Guide Organizations can use this workshop guide to inform the general public about the use of advance directives and your organization’s policy. Tab 1 of the guide offers general advice on how to plan and organize your educational program. It contains a possible time line, sample agenda, checklist of supplies, and model marketing copy. Identify Appropriate Speakers Speakers should represent the variety of disciplines involved in health care decision making. Suggested speakers include a health care organization representative, a physician, and an attorney. This workshop guide offers suggestions on: selection criteria for speakers; model speaker letter with guidance on workshop preparation; and talking points for each speaker (Tabs 2,3, and 4). Identify Participant Handouts Tab 5 of this manual is a state-specific, comprehensive Q&A booklet that you can distribute to individuals attending your educational program. The booklet answers a number of questions individuals may have concerning advance directives. It also includes a sample health care power of attorney form and a sample living will form for discussion purposes. Other handouts might include: your organization’s policy on advance directives; a values history (a sample copy is included in Tab 9, Appendix A for your consideration); or one of the resources listed in Tab 8. Develop the Agenda While a sample agenda is included in Tab 1 of this workshop guide, organizations are encouraged to develop any agenda that addresses local needs. We recommend a highly interactive session that uses discussion, Q&A, and lectures to convey the information. The optimal length of the educational session will depend on the number of participants; however, two hours is a suggested time frame. Logistics Consider how to encourage interaction and clear communication. A flipchart or other visual aids may help when unfamiliar medical or legal terms are used. A writing surface for each participant is recommended. Evaluating the Program Section 6 of this guide contains a model participant evaluation form. All participants should be asked to complete a program evaluation. You should review the evaluations to assess the speakers and the effectiveness of the program. Section 7 contains a summary sheet for you to complete and mail to help the sponsoring state associations assess the effectiveness of this new program. Please send a summary sheet for each program your organization presents to your state association. A list of the sponsoring state associations is on page 1 of Tab 1. Table of Contents Tab 1 Planning Tools Tab 2 Health Care Organization Representative Talking Points Tab 3 Physician Talking Points Tab 4 Attorney Talking Points Tab 5 Planning for Incapacity: A Self-Help Guide (Participant’s Handbook) Tab 6 Program Evaluation by Attendees Tab 7 Program Evaluation by Seminar-Sponsoring Organizations Tab 8 Resource List Tab 9 Appendices Sponsoring Pennsylvania Associations American Association of Retired Persons 225 Market Street, Suite 502 Harrisburg, PA 17101 (7 17) 238-2277 Pennsylvania Medical Society P.O. Box 8820 Harrisburg, PA 17105-8820 (717) 558-7750 Hospice of Central Pennsylvania 98 S. Enola Drive, Box 266 Enola, PA 17025 (717) 732-1000 The Hospital Association of Pennsylvania 4750 Lindle Road, P.O. Box 8600 Harrisburg, PA 17105-8600 (7 17) 564-9200 Pennsylvania Academy of Family Physicians 5600 Derry Street Harrisburg, PA 1711 1 (717) 564-5365 Delaware Valley Hospital Council 121 South Broad Street The North American Building Philadelphia, PA 19107 (2 15) 735-9695 Pennsylvania Association of Home Health Agencies 20 Erford Road, Suite 115 Lemoyne, PA 17043 (7 17) 975-9448 Hospital Council of Western Pennsylvania 500 Commonwealth Drive Warrendale, PA 15086 (4 12) 776-6400 Pennsylvania Association of Non-Profit Homes for the Aging Executive Park West, Suite 409 4720 Old Gettysburg Road Mechanicsburg, PA 17055 (7 17) 763-5724 Pennsylvania Bar Association P.O. Box 186 Harrisburg, PA 17108 (717) 238-6715 Pennsylvania Council of Churches 900 South Arlington Avenue Harrisburg, PA 17109 (7 17) 545-476 1 Pennsylvania Department of Aging 400 Market Street-State Office Building Harrisburg, PA 17 101-2301 (7 17) 783-7247 Pennsylvania Health Care Association 2401 Park Drive Harrisburg, PA 171 10 (7 17) 65 7-4902 1 Planning Time Line 3 Months Ahead* Identify target audience Identify and meet with potential Co-sponsoring/hostorganizations Check master calendar Set meeting date/add to master calendar Reserve meeting space Identify speakers Invite speakers Meet with internal departments (marketing, pub1ic relations, communications)/co-sponsoring organizations to establish promotion plan 2 Months Ahead* Send speaker confirmation letters Establish registration protocols 4 Weeks Ahead* Confirm room space and room arrangement Reserve audiovisual equipment Order refreshments Meet with speakers to discuss program Compile and copy handouts (those included in this guide and organization-specific materials) Prepare signage Start placement of public service announcements 3 Weeks Ahead* Send press releases and fact sheet Send out meeting announcements 2 Weeks Ahead* Start sending meeting confirmations, preliminary education information, and maps to participants 2 Days Ahead* Gather supplies Confirm refreshments Make copies of program evaluation forms Day of Workshop* Check room arrangements, registration area, and refreshments Post signs Host successful workshop Week after Workshop* Send thank you letters Send summary sheet in Tab 7 to your state association (within one week after your workshop) *Adapt schedule to your needs. 2 Workshop Planning Checklist Identify target audience Identify and meet with potential Co-sponsoring/hostorganizations (see resource section) Check master calendar Set workshop date/add to master calendar Reserve meeting space Identify speakers Invite speakers Meet with internal departments/co-sponsoring organizations to establish promotion plan Confirm speakers Establish registration protocols Confirm meeting space availability and room arrangements Reserve audiovisual equipment Order refreshments Meet with speakers to discuss program Compile and copy handouts (including program evaluation forms) Prepare signage Send public service announcements Send workshop announcements Send preliminary information and maps to participants Gather supplies Confirm refreshments Check room arrangements, registration area, and refreshments Post signs Host successful program Send thank you letters Send press release on outcome Send summary sheet in Tab 7 to your state association (within one week of program) 3 Supplies Checklist Registration sign-in sheet Name tags Audiovisual equipment (overhead, flip chart, public address system) Marking pens Extra handouts (handouts may include copies of a values history form [Tab 9, Appendix A], organ donation information [Tab 9, Appendix B], “Planning for Incapacity: A Self Help Guide,” [Tab 51 and any other information you want to distribute) Receipt book (if a fee is being charged) Extra pens or pencils Program evaluation forms 4 Potential Audiences There are many different places within the community to find audiences that would be interested in the workshop information. Consider the following: 0 0 0 0 0 0 0 0 0 0 0 0 Service organizations Businesses/corporations Senior groups/centers Religious institutions Community centers Caregivers Adult children Long-term care facilities Senior living facilities Homeownerheighborhood associations Health care organization employees/volunteers General population 5 FOR IMMEDIATE RELEASE: CONTACT: (YOURNAME) (YOUR TELEPHONE NUMBER) (YOUR FAX NUMBER OPTIONAL) (YOUR ORGANIZATION’S NAME) TO PRESENT EDUCATIONAL SESSION EXPLAINING ADVANCE DIRECTIVES As part of its ongoing commitment to provide quality health care, (your organization’sname) is offering a public education program on advance directives. “The program is open to everyone because we want to get the word out that advance directives affect all adults, and not just the elderly,” said (your spokesperson’s name and title) for (your organization’s name). As medical technology has improved, the ability to prolong life in patients incapable of expressing their wishes has created ethical dilemmas for family members, friends, physicians, and other health care providers. The legal and moral issues in such situations often are unclear and may not represent the patient’s own wishes. “Legally, medically, and ethically, the best person to make decisions about what kind of medical care a patient should receive or refuse is the patient,” said (last name of your spokesperson). “Advance directives allow people to make these decisions when they are fully capable and able to communicate them to other family members, as well as to their physician.” An advance directive is a legal document through which individuals can express their wishes concerning the medical treatments they want or do not want. One type of advance directive is the living will; another is the health care power of attorney. Increased interest in advance directives is the result of the federal Patient Self-Determination Act, which took effect December 1, 1991. Created as a result of several landmark court cases, including those involving Karen Ann Quinlan in New Jersey and Nancy Cruzan in Missouri, the act, among other things, requires that any health care organization participating in the Medicare and Medicaid programs inform patients* of their right to direct their medical care. First, the organization must ask all adult patients* whether they have prepared advance directives. If they have, patients* are responsible for giving this information to the organization’s personnel. Second, the organization must provide patients* with written information about their rights to make health care decisions. This includes information about advance medical directives as well as a copy of the organization’s policies regarding advance directives. Speakers for the workshop will include (name, title, and afiliation for each speaker). (Your organization ’s name) is presenting the advance directives educational session (day of week), (month, date), at (time of day). The (length of time the program will run) advance directives program is offered at no charge and will be held at/in (location of program). (Insert any applicable sponsor information here.) (Insert any information pertaining to reservations here fyour seminar space is limited. Include a telephone number to be used in making reservations.) (Insert appropriate parking information here.) For more information, contact the hour department) at (your organization ’s name), (area code and telephone number). * Patients can be in any of the following health care settings: a hospital, a home health agency, a nursing home, a hospice. Hospitals are not required to ask outpatients and emergency patients about their advance directives. #### 6 (YOUR ORGANIZATION’S NAME) ADVANCE DIRECTIVES FACT SHEET Why are advance directives important? Preparation of advance directives lets people maintain control over health care decisions affecting them by planning ahead. These choices remain in effect even if an individual becomes incapacitated. Why is so much attention suddenly being paid to advance directives? The federal Patient Self-Determination Act became law on December 1, 1991. It requires any health care organization participating in the Medicare program to inform all adult patients about their right to direct their medical care. What are advance directives? If competent adults want to maintain control over the health care treatment decisions that may be needed if they become incapacitated, several legal options are available. Documents known as advance directives can be prepared in advance of any incapacitating illness or condition they might suffer. One type of advance directive is a “living will,” also referred to as a “medical directive” or “declaration.” A living will is simply a written instruction spelling out any treatments that an individual wants, or does not want, in the event that he or she is incapacitated and permanently unconscious or terminally ill. A health care power of attorney (HCPA) is another important document that allows an individual to legally appoint someone to serve as hidher authorized “agent,” (or “attorney-in-fact” or “proxy” or “surrogate decision maker”). This document also may be referred to as a “health care proxy,” “health care surrogate,” or “power of attorney for health care.” A HCPA applies to any medical condition specified and allows the designated agent to apply some interpretation or implementation to situations that may occur. Must a patient have an advance directive? No. The Patient Self-Determination Act (PSDA) is an information and education statute only. Health care providers must not discriminate on whether or not you have an advance directive. Why bother? Medical technology has progressed so dramatically that life can now be prolonged. Sometimes this medical ability creates ethical and moral dilemmas. Families, friends, and physicians can be tom, trying to determine what an incapacitated patient would have wanted in such a situation. Can advance directives be changed? Advance directives can be changed at any time; however, it is important to notifL your family members, the person you have selected as your surrogate decision-maker, as well as your physician if this is done. Is it necessary to see an attorney to prepare advance directives? No. Many hospitals, physicians, and organizations now have forms that can be used to execute advance directives. This information about advance directives has been prepared by (your organization ’s name). 7 Copy for Newspapers, Newsletters, Community Announcements, and Flyers Ad copy for advance directives #1 Ad Copy Head: You should decide the kind of medical care you’d get if you were incapacitated and terminally ill or permanently unconscious. Body A: Without an advance directive, you may not be able to. Body B: (Your organization ’s name) is offering a public education program about advance directives on (day of week), (month, date) at (time) inlat (location of session). Body C: For more information/To make a reservation, call (your telephone number). Body D: Organization’s logo. #2 Ad Copy Head: Ask your family and friends this question. Body A: If you were incapacitated and permanently unconscious or terminally ill, would they be able to make the right medical decisions on your behalf? Body B: Make it easy for everybody. (Your organization ’s name) is offering a public education seminar about advance directives on (day of week), (month, date), at (time) inlat (location of session). Body C: For more information/To make a reservation, call (your telephone number). Body D: Organization’s logo. 8 Attorney Sample Confirmation Letter Dear (attorney’s name). Thank you for agreeing to act as a presenter at our advance directives workshop on (dayldate) at (time) at (location). As a public service, (name of organization) is committed to providing multi-disciplinary expertise on health care decision making and use of advance directives. Workshop overview-The workshop will provide individuals with general information on two types of advance directives-the power of attorney for health care and the living will. You will be joined by a physician and a health care facility representative in the presentation. Your role-We ask you to present the legal issues concerning advance directives. A program agenda is enclosed. Your lecture presentation should be approximately 20 minutes, with questions and answers for an additional 10 minutes. Yourpresentation-Our goal is to have a highly interactive session. I encourage you to think about providing hypothetical examples for people to react to and to solicit questions. Please let me know by (date) of any visual aids you may need. Preparation-Enclosed you will find a copy of the booklet and sample advance directives forms that we will distribute to attendees. Please review them and incorporate the booklet into your presentation so that people can follow along easily. I also have enclosed a list of recommended talking points, which have been approved by the Pennsylvania Bar Association and the American Bar Association, and our organization’s policy on advance directives for your review. I look forward to working with you. I plan a brief preliminary meeting with all the speakers approximately one-half hour before the start of the session to review the agenda and give all of you an opportunity to meet and discuss the issues. Please send me a biographical sketch that we can use for your introduction. We appreciate your contribution to this important public service. Sincerely, ( program coordinator) Enclosures: agenda “Planning for Incapacity” booklet talking points organization’s policy Your Co-presenters will be: 9 Physician Sample Confirmation Letter Dear (physician’s name) : Thank you for agreeing to act as a presenter at our advance directives workshop on (dayldate) at (time) at (location). As a public service, (name of organization) is committed to providing multi-disciplinary expertise on health care decision making and use of advance directives. Workshop overview-The workshop will provide individuals with general information on two types of advance directives-the power of attorney for health care and the living will. You will be joined by an attorney and a health care facility representative in the presentation. Your role-We ask that you present the medical issues concerning advance directives. A program agenda is enclosed. Your lecture presentation should be approximately 20 minutes, with questions and answers for an additional 10 minutes. Yourpresentation-Our goal is to have a highly interactive session. I encourage you to think about providing hypothetical examples for people to react to and to solicit questions. Please let me know by (date) of any visual aids you may need. Preparation-Enclosed you will find a copy of the booklet and sample advance directives forms that we will distribute to attendees. Please review them and incorporate the booklet into your presentation so that people can follow along easily. I also have enclosed a list of recommended talking points, which have been approved by the Pennsylvania Medical Society, the Pennsylvania Academy of Family Physicians, and the American Medical Association, and our organization’s policy on advance directives for your review. I look forward to working with you. I plan a brief preliminary meeting with all the speakers approximately one-half hour before the start of the session to review the agenda and give all of you an opportunity to meet and discuss the issues. Please send me a biographical sketch that we can use for your introduction. We appreciate your contribution to this important public service. Sincerely, (program coordinator) Enclosures: agenda “Planning for Incapacity” booklet talking points organization’s policy Your Co-presenterswill be: 10 Advance Directives Workshop Sample Agenda Note: This is a model. Individual organizations may design any agenda that addresses local needs. We recommend a highly interactive session that uses discussion, Q&A, and lectures to convey the information. Presentation of General Information with Q&A-2 hours 5 minutes Registration-As 10minutes Welcome-Description of the need for advance directives and background on the Patient Self-Determination Act. Describe the agenda and introduce the panel. Encourage questions. 20 minutes Health care organization representative presentation 5 minutes Q&A on presentation 20 minutes Physician presentation 10 minutes Q&A on presentation 20 minutes Attorney presentation 10 minutes Q&A on presentation 15 minutes General Q&A for all speakers-Consider having the speakers use hypothetical examples to stimulate questions. people enter, distribute materials including speaker background. Complete evaluation. 11 TALKING POINTS FOR HEALTH CARE ORGANIZATIONREPRESENTATIVE The following are suggested issues for a representative from a hospital, nursing home, hospice, or home health agency to discuss at the session. This presentation should be tailored to the practices and policies of each institution. The organizational representative may be a member of executive management with responsibilityfor implementation of the PSDA; a representative of social work, patient representation, or pastoral care; an ethics committee member or ethics consultant; or another appropriate individual. I. Patient Self-Determination Act A. If you become a patient* of our organization, federal law now requires that we inform you of your rights to make health care decisions, ask you whether you have an advance directive, and give you information about advance directives. [*Patients can be in any of the following health care settings: a hospital, a nursing home, a home health agency, or a hospice. Hospitals are not required to ask outpatients or emergency patients about advance directives.J On admission to treatment, (describe your organization 'spolicy). If it is an emergency or you are unable to communicate, the organization will attempt to get this information from a relative or friend who has come with you; the organization also will give them information on advance directives and organizational policies related to advance directives. When you are able to communicate, the organization (indicate who is responsible-social worker, nurse, etc.) will talk with you directly about these issues. If you are being transferred from one type of health care organization to another (Le., from a hospital to a nursing home, home health agency, or hospice, or vice versa), the law requires that each organization ask you about and give you information about advance directiveseven if you have already given this information to the other organization and even if this information is included in your transfer records. Regardless of whether you have been a patient* of the organization before, you must present a copy of your advance directive upon each admission to treatment. B. You are responsible for making sure that the organization gets a copy of your advance directive. Bring a copy with you if you can. Make sure that your family physician has a copy of your advance directive. Make sure that a close relative or friend has a copy in case you are unable to bring one with you. 1 If you have an attorney, you may want to provide your attorney with a copy of your advance directive. You may also want to give a copy to your spiritual leader. C. The organization will make sure that your records indicate that you have an advance directive. An advance directive only is used when you cannot speak for yourself. Even with an advance directive, you have the right to consent to or refuse treatment and to get information on treatment alternatives. There are no right or wrong instructions on an advance directive. The organization is interested in following your wishes. If you have given thought to the type of life-sustaining treatment you would want, but have not written a formal advance directive, talk with your attending physician and ask that your preferences be indicated in your record. You should note, however, that notes made in the medical record are not legally binding, but they do provide evidence of your wishes. The best thing to do is to prepare an advance directive, which is legally binding in Pennsylvania. You can change your advance directive at any time, but you must inform your physician, your nurse, or one of the organization’s social workers. They will make sure that the change is indicated in your record. D. The Patient Self-Determination Act does not require that you have an advance directive. Although health care organizations are not required to assist you in preparing an advance directive while you are a patient, (discuss your organization ’s practices with regard tofacilitating preparation of advance directives by patients *). 11. What you can do to help make sure that your physician complies with your advance directive. before you become ill or injured. Make sure that the physician knows what you mean by the terminology in your directive. For example: A. Discuss your advance directive with your physician-preferably Heroic measures or extraordinary treatment-does this refer to suffering for the patient or the type oftechnology involved? Withdrawal vs. withholding of treatment-if you would want a “trial of treatment” to see if a therapy would work, make sure that your physician will feel comfortable withdrawing treatment if it is not contributing to recovery. What are your values related to your lifestyle and your goals for treatment? What types of life-sustaining treatments do you consider overly burdensome? 2 Treatment40 you consider artificial nutrition and hydration to be “treatment” that can be withdrawn or withheld? (The common law in Pennsylvania recognizes artificial nutrition and hydration as treatments that can be withdrawn, but Pennsylvania law also requires that an individual’s living will specify that person’s wishes in this area.) B. Discuss your advance directive with, at a minimum, your family, your surrogate decision maker, and your physician. If they object to implementation of your advance directive, it can become complicated to comply with it. You also may wish to discuss your advance directive with your clergyman and/or attorney. C. If you have designated a proxy or surrogate decision maker: make sure the designee is aware of and comfortable with the role. make sure the designee understands your wishes and values. make sure the designee has a copy of your advance directive. make sure that others, such as family members and close friends, know who your proxy or surrogate decision maker is. III. Organizational resources to help you and your family. [Explain what type of resources (educational videotapes and publications, pastoral care and chaplaincy services, social workers, ethics committee, etc.) your organization has available to assist patients, their families, physicians, and caregivers in grappling with these types of issues.] 3 TALKING POINTS FOR PHYSICIANS Thefollowing are suggested issuesfor a physician to discuss at the advance directives session. The physician should have a reasonable amount of clinical experience with decisions to withhold or withdraw life-sustaining medical care. A. Reasons for having an advance directive. Important medical decisions often must be made after patients have lost their ability to make medical decisions. Physicians are in a much better position to direct the treatment of their incapacitated and either permanently unconscious or terminally ill patients when there is an advance directive to guide them. B. Kinds of situations in which treatment decisions may have to be made while the patient is incapacitated. Discuss permanently unconscious states and other circumstances in which patients may temporarily or permanently lose their ability to make medical decisions. Explain distinctions among brain death, coma, and persistent vegetative states. C. Kinds of medical procedures or treatments that might or might not be provided. Explain cardiopulmonary resuscitation, ventilatory care, artificial nutrition and hydration, surgery, antibiotics, comfort care, etc. Patients need to understand that treatments may not always offer much benefit and that they may have significant risks or other disadvantages. Sometimes a treatment can provide supportive care without reversing a superimposed problem, but without affecting the underlying problem. People may want a trial of treatment, with the treatment to be continued if it is providing a meaningful benefit. Audience should be assured that comfort care will be provided. The difficult question is how to proceed when comfort care includes surgery, antibiotics, or some other treatments that the patient might not otherwise desire. Assure audience that withdrawal of artifical nutrition and hydration does not cause a painful death. D. Clinical advantages and disadvantages of the different ways to express preferences. To a certain extent, proxies, or surrogate decision makers, are in a better position to make treatment decisions since they will be deciding at the time the decision needs to be made. They can take into account all of the particulars of the patient’s condition. Since patients have to decide in advance, they only can guess how they would feel about having treatment provided or withdrawn. With proxies, the physician can have an extended and detailed discussion. If a patient has a living will that does not designate a proxy, the physician has to interpret the patient’s direction, and there always is going to be some ambiguity in the instructions. 1 On the other hand, proxies often do not have an accurate sense of the patient’s true preferences and may be deciding on the basis of their own preferences. When living wills are used, the patient can carefully consider the kinds of decisions that might have to be made and give specific instructions. People can express their preferences very concretely by indicating whether or not they want certain treatments if they become incapacitated and terminally ill or permanently unconscious. They also can describe their goals of treatment (e.g., to have their ability to communicate with family members restored). If a treatment would help fulfill a goal of treatment, then it would be provided. People can discuss how important certain values (e.g., how important it is to avoid pain or to take advantage of any possibility of recovery). Combining a proxy appointment and a living will may provide the most effective approach to planning ahead. E. Meeting with your physician. If the patient has a primary care physician, it is important for the patient to meet with the physician to discuss the advance directive. The physician will have a much better understanding of the patient’s preferences if discussions are held. If a proxy is being appointed, then it is important for the patient, the physician, and the proxy to meet together. Joint meetings will help ensure that everyone has the same understanding of the patient’s wishes. F. Discussions with family members. Patients who discuss their preferences with family members or friends may find the discussions helpful in deciding what treatments they want and how to express their preferences. In addition, the family members and friends will be in a better position to ensure that the patient’s wishes are carried out. G . Updating advance directives. People’s preferences may change over time, so it is important to reevaluate advance directives on a regular basis, generally yearly. In addition, when the patient’s medical condition changes, advance directives should be revisited in case the patient’s preferences have changed. H. Absence of an advance directive. Discuss what their physician will do if no advance directive is prepared. Explain that family members and/or close friends will be consulted and that the patient’s oral statements will be used to determine their preferences, especially if their physicians have documented them in the medical record. I. Emergency situations. Explain that, in emergency situations, physicians or paramedics may not be aware of the advance directive and therefore may provide undesired care. Some health care providers may feel uncomfortable trying to interpret an advance directive in an emergency setting, and therefore err on the side of overtreatment. Discuss the lack of an ethical distinction between withholding and withdrawing care and assure the audience that undesired treatment can be withdrawn even though it has been started. 2 In Pennsylvania, emergency medical services personnel will, in most cases, ignore the existence of an advance health care declaration (living will). This is the appropriate response under Pennsylvania law, because normally the living will is not operative at the time emergency services are provided. Under Pennsylvania law, a living will declaration becomes operative only after the following events have occurred: (1) a copy has been furnished to the attending physician, and ( 2 ) the declarant is determined by the attending physician to be incompetent, and (3) the declarant is determined by the attending physician to be in terminal condition or in a state of permanent unconsciousness. In most cases, these requirements will not have been met at the time that emergency services are being rendered, and so EMS personnel will properly ignore the non-operative living will and render lifesustaining treatments. Even if the patient’s living will is operative, emergency services personnel will almost invariably follow accepted treatment protocols and provide treatment, unless they are presented with an original declaration (living will) and receive directions from the medical command physician regarding treatment, or unless the medical command physician has received prior notification by the attending physician that a valid, operative living will exists and directs the emergency personnel based on the living will. When met with any conflicting information regarding a patient’s desires for treatment, EMS personnel are authorized to follow their standard treatment protocols. J. Pregnantwomen. Pennsylvania law requires that despite the existence of a living will, unless certain conditions are met, life-sustaining treatment, including nutrition and hydration, must be provided to a pregnant woman who is incompetent and has a terminal condition or who is permanently unconscious. Life-sustaining treatment maybe withheld or withdrawn only in conformity with the provisions of the living will, if both the attending physician and an obstetrician who has examined the patient certify that the lifesustaining treatment (1) would not sustain the woman so as to permit the development and live birth of the unborn child, or (2) would be physically harmful to the pregnant woman, or (3) would cause pain to the pregnant woman that cannot be alleviated by medication. Physicians are not required to perform pregnancy tests before implementing the provision of an operative living will unless the physician has reason to believe that the woman may be pregnant. K. Conscience objections to following a patient’s living will. Pennsylvania health care providers are not required to follow the instructions contained in a patient’s living will, if to do so would violate the provider’s ethical and moral precepts. If a health care provider cannot in good conscience comply with a living will declaration, the provider must so inform the patient, or the surrogate, family, guardian, or other representative of an incompetent patient. The provider must then make every reasonable effort to transfer the patient to another physician or facility that will comply with the declaration. If transfer is not possible, the provision of life-sustaining treatment in contradiction to the directions in the living will does not subject the health care provider to criminal or civil liability. It also should be noted that employees of health care providers may not be required to participate in the withholding or withdrawal of life-sustaining treatment if they object to such involvement. 3 TALKING POINTS FOR ATTORNEYS Thefollowing are suggested issuesfor attorneys to discuss at the advance directives session. The attorney should have signijcant experience in counseling or educating individuals about planning for health care decisions. The resource list in this guide ident$es some resources for finding attorney speakers, if h e b is needed. Tipsfor Speaker: Refer to relevant parts of handouts given to the audience as you discuss these issues. I. Introduction: How Law Applies to Health Care Decisions The law provides only a framework and a few tools to aid decision making. Courts and legislatures have really struggled with this issue only since the well-known 1976 New Jersey case of Karen Ann Quinlan. The law does not give neat and simple prescriptions for decision making. The actual experience of decision making is very personal. Ideally, it involves thoughtful discussion and collaboration among all the individuals directly involved. Health care decision making is not just an issue for older persons. 11. The Right to Control Health Care Decisions A. Startingpoint. With few exceptions, our system of law has historically and consistently affirmed the right of the competent individual to control decisions about what happens to his or her body. This includes the right to refuse any suggested medical intervention. The right has several sources: the common law right of self-determination and tort of battery; the principle of informed consent; and constitutional concepts of liberty, privacy, and freedom of religion. B. How we normally exercise this right. By talking to your doctor and other health care providers. You have a right to: Know all the relevant facts about your medical condition. Know all the pros and cons of different treatment options. Talk to other doctors and get their opinions, too. Say “yes” to treatment or care that you want and “no” to treatment or care that you do not want. Your doctor is the expert in medicine, but you are the expert in defining and applying your personal values and preferences. III. What Happens to This Right If You Are Too Sick and Incapacitated to Decide? In an emergency, the law presumes consent. In all other instances, decision making authority must shift to someone else. There are three general options. None are necessarily exclusive of the others. A. Using an advance directive (AD). (Guide audience through state law.) The first option allows you to maintain some control over decisions by planning ahead. There is a lot of confusion over terminology and over distinctions made between types of ADS. The most well known term is still “living will.” However, a living will is only one type of AD, and for most people, it is not the best AD by itself. A living will (referred to in the Pennsylvania law as a “declaration”) is simply a written instruction spelling out any treatments you want or don’t want in the event you are incapacitated and you are terminally ill or permanently unconscious. A living will simply says, “Whoever is deciding, please follow these instructions.” A health carepower of attorney (HCPA) is a document that legally appoints someone of your choice to be your authorized attorney-in-fact or substitute decision maker. The Pennsylvania power of attorney statute is unclear as to how much authority you can give to your attorney-infact, but many lawyers believe that you can effectively delegate as much authority as you desire to your attorney-in-fact, at least if you combine your HCPA with a living will that meets the requirements of the Pennsylvania Advance Directive for Health Care (Living Will) Act. Still, the Pennsylvania power of attorney statute provides an indefinite and inadequate foundation for the use of this valuable legal tool. A bill is presently (mid-1995) before the Pennsylvania legislature that would update the Pennsylvania statute and clarify many issues regarding the use of the HCPA in Pennsylvania, but this bill is not expected to be enacted in the near future. In most states, and in Pennsylvania as well (in the opinion of many Pennsylvania lawyers), a properly drafted HCPA can do everything a living will can do, and more. Compare: living will vs. health carepower of attorney. It makes the most sense to combine the living will and the HCPA in one document, and in most states you can do this. Despite the inadequacies of the Pennsylvania HCPA statute, many Pennsylvania lawyers recommend combining these two legal tools into one document as well. If you do have separate documents, it is important to make certain that they are fully coordinated so that conflicts between their provisions are avoided. On its own, a statutory living will is a very limited document because: 1. A statutory living will applies only if you are incapacitated and either terminally ill or in a permanent coma. 2 . A living will addresses only life-sustaining medical treatment. However, you have an underlying right to spell out your wishes about any condition or treatment, and your wishes have legal and practical significance even if you do not fit within the requirements of a statutory living will. 3. A living will provides no mechanism for interpretation or implementation unless a surrogate decision maker is appointed. This is the role that an agent plays under a HCPA. 2 Oral instructions. Telling your doctor and others what you want does provide evidence of your wishes to help guide decisions if you later become incapacitated, especially if your doctor writes your wishes down in your medical record. (In a few states, oral instructions can have the same legal standing as a written advance directive if properly witnessed.) However, written ADSare more likely to be followed. B. Family consent Most people assume that if you are not able to make health care decisions on your own, then the right to consent to or refuse health care treatment automatically passes to your spouse or other relative. Indeed, about half of the states have health surrogate statutes that authorize someone else, typically family members in order of kinship, to make some or all health care decisions if you have not planned ahead by executing a comprehensive advance directive. Pennsylvania’s legislature has never enacted such a law. In Pennsylvania, the automatic authority of family members to make health care decisions for patients who lack decision making authority is not at all clear. Pennsylvania statutory law is completely silent on this issue. Legislative proposals have been advanced that would update Pennsylvania’s law on the use of health care powers of attorney and authorize decision making by family consent for those persons who are incompetent and have no applicable advance directives, but it does not appear that these legislative proposals will be enacted in the near future. A recent Pennsylvania Appeals Court case (Zn Re: Fiori) has held that a close family member may consent to the termination of life-sustaining treatment for an individual, where the relative believes that the individual would want treatment stopped, where no other family members disagree, and where two qualified doctors have certified that the patient is in a persistent vegetative state without reasonable possibility of recovery. Thus, there is now for the first time some legal authority in Pennsylvania to permit family members to consent to termination oftreatment in very limited circumstances. Even in the absence of such statutes and legal authority, most doctors and health facilities routinely rely on family consent as long as there are close family members present and no controversial decisions to be made. Because of the possibility that decisions will not be made in the way you would want them, nor by the persons you would want to make them, it is better to have an AD. This may also spare family members the agony of having to guess what you really would want. C. Guardianship The third legal option for decision making where you are incapacitated is court-supervised guardianship. This is an option of last resort: it should not be initiated merely because you have no advance directive. As noted by the Pennsylvania Superior Court in the Fiori case, the court system is an inappropriate forum for making termination of life support decisions. The court stated: “It is within the ‘private realm of the family where such important personal decisions should be made.”’ 3 IV. Advance Directive Forms-What You Need to Know A. Advice on forms The PSDA has triggered a profusion of advance directive forms-both official and unofficial. Forms should not become the main focus of attention. Forms are supposed to aid, not take the place of communication. Therefore, the form ought to be a starting point, not an end point. There is no ideal form for everyone. Any form you use should be personalized to reflect your values, after thoughtful discussion with providers, family, and advisors. Discussion should not cease after the form is executed. B. Completing an advance directive (We will discuss one type of living will form here today, but there are alternative forms. See the resource list. Guide audience through the form and execution requirements.) Additional comments may be appropriate regarding: types of life-sustaining treatment one may want or not want; nutrition and hydration; cardiopulmonary resuscitation, do not resuscitate (DNR) orders, other procedures; primary and alternate surrogates; and personal and family medical history that may make certain conditions or treatments more likely. C. Changing or terminating an advance directive Individuals always retain the right to change or revoke an AD while they have the capacity to do so. Revocation can be accomplished orally or in writing by just about any means that indicates an intent to revoke. In Pennsylvania, individuals can revoke a living will in any manner at any time, but they must be of “sound mind” to execute one. If changes in the document are desired, it is always best to execute a new document, because the same formalities of signing and witnessing are required for changes. V. What to Consider Before Doing an Advance Directive? A. ClarifL values and preferences. Talk with your physician, family members, and friends. Consider doing a “values history.” (Included in your handouts.) B. Selection of a surrogate (term applies to living will) or agentlattorney-in-fact (terms apply to HCPA). The choice of a surrogate is the most important part of this process. Your surrogate will have great power over your health and personal care if you become incapacitated. There is normally no formal oversight or monitoring of your surrogate. 4 Therefore, Speak to the person you wish to appoint beforehand to explain your intentions. Know who can and cannot be a surrogate. Pennsylvania’s living will law contains no specific limitations as to who may act as a surrogate. However, some authorities suggest that it is inappropriate and unwise for health care providers to serve in this capacity unless related by blood or marriage to the declarant. If a health care provider serves as surrogate, it may assume an obligation to investigate and document the patient’s medical preferences and value system, and then to apply that value system to the decision making situations that arise. These are time-consuming and difficult responsibilities for a provider to undertake. In addition, a health care provider unavoidably wields enormous influence over most aspects of an incompetent patient’s life. When combined with the power held by a surrogate, the authority of the provider over the patient’s life becomes nearly absolute. Health care providers may feel uncomfortable with this level of influence and welcome the opportunity for discussion and oversight that are offered by the existence of an independent surrogate or other health care agent. Name successor surrogates. Preferably, do not name Co-surrogates. You may wish to expressly disqualify someone as surrogate. If there is no one whom you really trust to be your surrogate, you may be better off using only the living will. Or you could choose to limit the authority of your surrogate in any way you wish, such as giving the surrogate authority over some but not all treatment decisions or by requiring concurrence between surrogate and provider. VI. What If My Doctor Refuses to Follow My Advance Directive? A. Find out ahead of time your doctor’s views about ADS. If you disagree, you may wish to find a new doctor. B. PSDA right to be informed. Health care facilities/agencies, Le., hospitals, nursing homes, home health agencies, and hospices, must inform you of their policies about ADS in writing at the time of admission. Under Pennsylvania law, providers may restrict or refuse to honor ADS under a conscience objection. Individual providers, i.e., doctors, do not have the same obligation to inform you ahead of time, so it is up to you to find out. C. Right to transfer. If you are in a condition to which the AD applies and the provider will not honor your directive, Pennsylvania law requires providers to try to transfer you to a provider who is willing to honor your advance directive. (Most states require a reasonable effort to transfer the patient.) 5 D. Out-of-state advance directives. States often differ with respect to AD formalities, such as witness qualifications, forms, or other requirements. Many existing statutes are silent or vague about recognizing out-of-state directives. Pennsylvania’s living will statute makes no mention of the legal effect to be given out-of-state advance directives. However, if the out-of-state directive conforms with Pennsylvania requirements regarding, for example, witnesses or mention of nutrition and hydration if they are to be declined, it should be honored in Pennsylvania. Realistically, providers normally will try to follow your wishes, regardless of the form you use or where you executed it. Therefore, only those individuals who spend significant time in more than one state need seriously consider executing an AD for each state. (It may be advisable to find out whether one document meets the formal requirements of both states.) As a practical matter, you may want different proxies if the same proxy is not easily available in both locations. VII. Is a Lawyer Needed to Do an Advance Directive? No, a lawyer is not needed. A lawyer is a very helpful resource, but not the only resource, nor always the best resource for all persons. 6 Reproduction Restriction The copyright for Planning for Incapacity: A Self-Help Guide to Advance Directives is held by Legal Counsel for the Elderly, Inc. Reproduction of any or all of the guide is prohibited except under the following circumstances. Members of any of the sponsoring organizations may reproduce the guide (Section 5 of the Advance Directives Program Guide) in sufficient numbers to distribute to those who attend the Advance Directives Workshops conducted as part of the Advance Directives Program. Interested in Distributing Planning fur Incapaciq? to all incoming patients? as part of your community education effort? as a service to your staff? It costs only slightly more than you will pay to copy the workshop materials. Legal Counsel for the Elderly (LCE) will print bulk orders of its Planning for Incapacity Guide and include your organization’s name and logo. The LCE manual provides a practical, inexpensive way to meet your legal obligation to provide not only up-to-date information on your patients’ rights under state law but also your organization’s policies. Q: Who should receive information on advance directives? A: If you receive Medicare or Medicaid payments for your patients, you must: provide all adult patients with a statement of their rights under state law to control their health care; inform patients of your organization’s advance directive policy; educate staff about advance directives; educate the community about advance directives; Q. Is the information in the guide current? A. Yes. The law requires that you give your patients current information on state law. With LCE’s Planning for Incapacity, you are assured that the information is up-to-date. LCE continually monitors changes in federal and state law and updates the guides as state law and practice change. Q. Can this guide be individualized for my facility? A. Yes. LCE will print your facility’s name, address, and phone number on the guide if you order 500 or more. LCE also can include your facility’s policies and procedures in the guide. Q. What is the cost? A. $2.00 per guide for orders of 500 or more plus a total shipping cost of $25 per 500 ordered. Contact: Sally Balch Hurme, Esq., at Legal Counsel for the Elderly/AARP, (202) 434-21 52. PLANNING FOR INCAPACITY: A Self-Help Guide Advance Directive Forms for Pennsylvania Legal Counsel for the Elderly, Inc. Sponsored by the American Association of Retired Persons 601 E Street, N.W. Washington, DC 20049 1992. Legal Counsel for the Elderly, Inc. All rights reserved. ACKNOWLEDGEMENTS This manual is the result of a collaborative effort. Particular thanks go to the following staff of Legal Counsel for the Elderly for writing and producing these guides for thirty states: DaCosta R. Mason who wrote each guide; Ayn Crawley who provided guidance and developed the Practical Tips and Talking to Your Doctor sections; Kim Gyle who researched the law in each state; Sally Hurme who coordinated the production of each of the different guides; Donna Barker who developed a readable format and design, despite all of the revisions she had to endure; Michael Schuster and Wayne Moore who provided support in the development of this publication; and Lou Burdman, Esq., Legal Hotline for Older Americans, Pittsburgh, Pennsylvania, for reviewing this guide. Special thanks also go to the following individuals representing their organizations who reviewed this guide: Joanne Elden Beale, Catholic Health Association; Marjorie Carey, Greg Hodur, Gail Lovinger, American Hospital Association; David Orentlicher, American Medical Association; Charles Sabatino, American Bar Association; Deborah Stewart, Voluntary Hospitals of America. Thanks also to the members of The Hospital Association of Pennsylvania’s Advance Directives Task Force and especially to the following persons and organizations for their extensive work in adapting this guide to be Pennsylvania specific: 0 0 0 0 0 0 0 0 0 0 0 0 0 Patricia L. Bricker, The Hospital Association of Pennsylvania; Jeffrey A. Marshall, Esq., and Jennifer Zimmerman, Pennsylvania Bar Association; Shirley Sharp, American Association of Retired Persons, Pennsylvania Chapter; Janet Wall, Pennsylvania Health Care Assocation; Pat Wood, Pennsylvania Academy of Family Physicians; Dan Greenawalt, Pennsylvania Department of Aging; The Rev. Paul Gehris, Pennsylvania Council of Churches; Pat Jurczak, Hospital Council of Western Pennsylvania; Suzanne Torres, Delaware Valley Hospital Council; Karen Paris, Hospice of Central Pennsylvania; Margaret Gray, Managed Care Association of Pennsylvania; Terry Stark, Pennsylvania Association of Home Health Agencies; and Jeff Greenawalt, Pennsylvania Medical Society. TABLE OF CONTENTS When Are Advance Directives Needed? ..................................................................... 1 Which Advance Directive Should I Choose? .............................................................. 3 Section I Health Care Power of Attorney ........................................................................................ 7 Section II Living Will ...................................................................................................................... 13 Section 111 Practical Tips ................................................................................................................. 21 Section IV Talking to Your Doctor ................................................................................................... 23 Glossary ....................................................................................................................... 29 Appendix A Sample clauses to insert into your health care power of attorney ................................. 31 Appendix B Sample clauses to insert into your living will ................................................................. 33 Sample Wallet Cards ................................................................................................... 35 Resources .................................................................................................................... 37 When Are Advance Directives Needed? You are in a nursing home with Alzheimer's disease which causes you to be confused and disoriented. You fall, fracture your hip, and now you require a hip replacement. Since you are unable to make the decision, who will consent to the treatment? You are struck by a speeding motorcycle while crossing the street. While you are unconscious at the hospital, your doctor determines that you require a blood transfusion. For religious reasons, you have objected to transfusions in the past. Now that you cannot voice your objection, how can you be sure that your wishes will be protected? After being treated for a heart condition, you suffer a stroke. As a result, you have severe brain damage, are now in a permanent coma, and are not expected to live more than a few months. You are fed through a tube. Should the feeding tube be removed? Who will make the decision? How should the decision be made? In most health care situations, you have the right to make decisions about your medical treatment. Based on the information you receive, as well as your values and beliefs, you must weigh the risks and benefits of the proposed treatment, the likelihood of success, and any alternative course of treatment. Ultimately, you decide which treatments you want and which ones to refuse. However, there may be a time when your illness, injury, or disability prevents you from being able to make your own decisions. Even if you are unable to make the decision, a decision will still be made. The issue becomes how much control you wish to exert over those decisions. Recent advances in technology have increased the ability of the medical profession to extend life where formerly an individual might have died. Many people are increasingly concerned about the quality of the life that they will experience as the result of these advances in medical technology. This is particularly the case where an individual is mentally or physically incapacitated and unable to make decisions about medical care. Courts have almost always followed the expressed wishes of competent adults. A competent adult can communicate preferences about future medical treatment through legal documents called advance directives. By using advance directives, you can control your health care decisions, even if you become incapacitated in the future. You prepare the advance directives while you are capable of making your own decisions. Generally, they take the form of instructions to your doctor, or appointment of someone to make decisions for you. They can cover specific treatments such as life-sustaining procedures, or be very general and cover any medical decisions. An advance directive can allow you to participate in decisions such as: choosing health care providers (doctors, nurses, home health aides, etc.); deciding who can have access to your medical records; choosing the type of medical treatment you will receive; consenting to or refusing certain types of medical treatment; and choosing the person who will make decisions for you when you are unable to do so. 1 Which Advance Directive Should I Choose? Should I have an advance directive? Yes. Advances in medical technology in the last decade have changed the general view about health care. We now have cures for diseases that led to death a decade ago. Medicine also has seen the development of procedures and treatments that are solely for the purpose of prolonging one’s life. For many people, the thought of their life being prolonged when no cure is possible is unacceptable. Others feel that these procedures provide additional possibilities for survival. In either case, difficult choices must be made. Clearly, if you have the capacity to decide, you have the right to make choices. However, if you are unable to make your own medical treatment decisions, someone else will decide for you. Advance directives allow you to control your health care decisions even when you become incapacitated. To limit certain types of treatment, you need an advance directive. To be sure that you will receive certain types of treatment (subject to medical necessity), you need an advance directive. If you want to choose who will decide for you when you are unable to decide for yourself, you need an advance directive. The type of advance directive you choose depends on what you want to accomplish. The two most common advance directives are the health care power of attorney and the living will. What is a health care power of attorney? A health care power of attorney (HCPA) is a legally enforceable document in which you (the principal) authorize another person (the agent or attorney-in-fact) to make health care decisions when you cannot do so. The document must be prepared and signed while you are competent, and is not affected by your later disability or incapacity. You may state in the document both the types of treatment that you do not want as well as any treatment that you want to be sure that you receive. The document can give your attorney-in-fact authority to make specific health care decisions or the authority to make any and all health care decisions you could make, if you were able. However, as long as you can make your own decisions, you, and not your attorney-infact, have the authority to make your own treatment decisions. In Pennsylvania, the use of powers of attorney for health care are covered in general statutes on the use of power of attorney for financial and other purposes. The statute provides no details regarding the use of powers of attorney in the health care context, no procedural safeguards against inappropriate use of a health care power, and no guidelines for the attorney-in-fact or health care facility. There are few specific requirements other than that the delegation of decision making authority to the attorney-in-fact must be in writing. If the attorney-in-fact is to make termination of life-sustaining treatment decisions for the principal, it is important that the formal requirements of the living will statute be met in the power of attorney. Many questions, such as the criteria the agent should use in making a decision; the breadth of the powers that can be delegated; the formalities of execution; the right of the attorney-in-fact to obtain medical records, disclose medical information, execute releases from liability, and pay for the cost of care; the immunity for providers; and the input that is required from a marginally competent principal, are not addressed by the statute. Legislation that deals with these issues and would make the power of attorney a more effective advance directive tool for Pennsylvanians is under consideration. It makes sense to use only one document so that your doctor can find all of the relevant information in one place, and your health care attorney-in-fact will be fully aware of your specific instructions. For these reasons, many lawyers recommend that you place your living will instructions in your health care power of attorney. Even if you don’t have someone you want to name as your attorney-in-fact, you need a living will to give your instructions about the use of life-sustaining treatment should you ever be incapacitated and terminally ill or permanently unconscious. If you don’t want to name an attorney-in-fact, you should have a living will prepared instead of a combined document. If I move to another state, will my advance directive be valid? The advance directive should be valid. It is evidence of your wishes no matter where you are. However the legal requirements for advance directives vary from state to state. A few states specifically recognize advance directives that were validly executed in another state. In most states the law about recognizing directives signed in other states is unclear. If you want to be absolutely safe when you move to another state, it is a good idea to complete a ne