Legal Health Tools
How would I like to be cared for if I were to become seriously or suddenly disabled and unable to express my wishes? Do I need a living will? These are questions most of us assume we need to think about only when we're elderly, though some of us with elderly parents have begun thinking about them now in order to help our parents.
The fact is that while it is natural to link these types of questions with old age, the stakes are actually higher for younger people, in that, if tragedy were to strike, by today's laws, a young person could be kept alive for decades in a condition he or she might not want.
For example, did you know that if you do not have an advance directive and you lose your capacity to make medical decisions for yourself or express your wishes, some state laws will give decision-making power over your well-being to default decision-makers or 'surrogates,' which can be family members or a close friend? Problems can arise when family members may not know what you want in a given situation or disagree about a course of action.
In another scenario, a hospital physician or specialist who does not know you could become your decision-maker, or a court proceeding may be necessary to resolve a disagreement, the result being that decisions about your medical care may not reflect your wishes or may be made by people you would not choose. Making your wishes known and appointing someone ahead of time is a far better strategy.
This article is designed to acquaint you with: 1.) the basic legal health care tools available to you to ensure that your wishes are carried out in the event you become seriously ill or disabled (Advance Directives, including Medical Powers of Attorney and Living Wills) and 2.) the legal form you need to ensure that you receive full information about any treatment that you may be given (Informed Consent). Some of these may require assistance or guidance from a professional while others are simply documents that you must understand and sign. There may be other legal limitations and variations on all of these depending on where you live.
One way to get started is to consult an attorney. If you need help finding a qualified attorney, contact your state bar association, which can provide referrals to attorneys knowledgeable in this area. Another source of referrals may be your health care professionals or national organizations dedicated to end-of-life issues. (See Resource list at this Web site.)
Even though lawyers and health care professionals are good resources for this kind of information, they are not required in order for you to execute advance directives. Both federal and state laws govern the use of advance directives; be sure to refer to your state's statutes to ensure your documents fulfill the statutory requirements.
Informed Consent
As a patient, you have a right to a thorough explanation of medical treatments-an explanation that spells out the benefits, risks, and alternatives of any procedure. What's more, you have the right to delay, refuse, or withdraw permission for a particular therapy at any time. This is called informed consent. Each state has its own special rules governing particular types of treatment, such as human experimentation, mammography results, AIDS testing, sexual assault, blood transfusions and so on.
To make informed health care choices, you must make sure that your health care professionals provide the following information:
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a description of the recommended treatment or procedure as well as alternative treatments or procedures
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a description of the risks and benefits of the recommended and alternative treatments or procedures, especially risk of death or serious disability
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the probability of the success of the treatment-as well as the definition of "success"
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their experience caring for similar conditions or offering similar treatments, particularly if your condition or the proposed treatment is uncommon
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the likely results should you decide to refuse any treatment
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the major problems anticipated in recuperation, including how long it will be until you can resume your normal activities
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any side effects that may be particularly damaging to you personally
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any other information patients in your situation generally receive, such as cost and how much your health plan will cover
Every hospital asks patients to sign a consent form, which gives the institution the right to treat them. (Signing a consent form does not mean that you are relinquishing your legal rights, such as the right to sue.) The details of consent forms vary from hospital to hospital, but some general advice holds true in most cases:
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Read whatever you sign carefully
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Don't be afraid to ask questions if you don't understand anything included in the form or if it doesn't clarify everything you want to know about your treatment.
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Avoid signing an open consent form, which allows the hospital to do whatever it wants.
Advance Directives
If you become seriously ill and are unable to make decisions about your own health care-or unable to make those decisions known-who will make those decisions for you? Will your loved ones, or anyone for that matter, know what your wishes are?
Using a legal planning tool known as an "advance directive," you can do something now to make sure your loved ones are not burdened with making such decisions for you, while at the same time ensuring you are provided the level of medical care that you want in accordance with your own moral and religious beliefs.
An advance directive is an oral or written instruction about your future medical care to which your loved ones and health care professionals can refer in the event you become unable to speak for yourself. Two legal documents-a medical power of attorney and a living will-are types of advance directives. (These documents will not be used as long as you are able to express your own decisions, in which case your consent must be obtained for medical treatment.) Many bioethicists and healthcare lawyers feel that the medical power of attorney is a simpler and more effective way to convey your wishes than a living will.
A Do Not Resuscitate consent may be given to your health care professional in order for a Do Not Resuscitate order to be issued. Do Not Resuscitate orders deal only with cardiopulmonary resuscitation (CPR) and related care such as defibrillation (shocking the heart), not other life-saving measures. In some states, there are also special rules about consenting in advance to a 'Do Not Resuscitate (DNR)' order, while in others, preferences about cardiopulmonary resuscitation can be included in the medical power of attorney or living will.
If you create advance directives, it's also important to remember:
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You should discuss all advance directives in detail with your loved ones, your health care professional, and your lawyer. Make sure they understand your wishes.
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Every health care provider is supposed to document in your medical record whether or not you have signed an advance directive. But in the end, it's up to you to ensure people know about your advance directives and that everyone who might need a copy of the directives has one. Other important things to do:
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Keep the original signed copies of these documents in a safe but accessible place-not in a safe deposit box.
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Give photocopies to your family, close friends, clergy, health care professionals and anyone else who might become involved in your health care.
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If you change these documents, make sure that you give copies of the new versions to everyone who received the old ones. It makes sense to keep handy with this document a list of everyone to whom you've given a copy, in case you're concerned that you might forget.
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The federal Patient Self-Determination Act also requires health care facilities to inform patients of their right to sign advance directives. As a result, hospitals and other facilities have developed printed information regarding advance directives and how the facility implements these patient rights. The law also requires facilities to inform patients in writing if they have institutional religious objections to honoring patient preferences. It's important that patients read this material so they're aware of these limitations in advance, and can decide to go elsewhere for treatment.
Medical Power of Attorney
A medical power of attorney-also called a durable power of attorney for health care, health care proxy or appointment of health care agent-is one type of advance directive and is a legal document. With it you name a person to make medical decisions for you any time you are unable to make your own medical decisions. Unless you formally appoint someone to decide for you, many health care providers and institutions will make critical decisions for you that might not be based on your wishes. In some situations, a court may have to appoint a guardian unless you have an advance directive.
Many bioethicists and health care lawyers believe that a medical power of attorney is the simplest, most effective type of advance directive. A medical power of attorney names your representative but generally does not need to set forth specific guidelines or personal instructions, thereby allowing your agent to respond flexibly as your medical situation changes and as situations arise that you did not foresee. In other words, if you add instructions to this document, you might unintentionally restrict your agent's power to act consistent with your wishes.
You should thoroughly discuss with the person you name as your agent your wishes under a variety of scenarios, and feel comfortable that this person will make decisions consistent with your beliefs and morals.
Steps in Granting Medical Power of Attorney
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Choose a health care agent. To complete a medical power of attorney, you must first chose an agent, who can be a family member or close friend. In many states, the person you name as your agent cannot be a health care professional involved in your care. You can also choose an alternate to step in if the first person is unable, unwilling or unavailable to act for you were the need to arise.
A lawyer will have the proper forms for your state, or you can print a state-specific form by visiting the National Hospice and Palliative Care Organization Web site, located at www.caringinfo.org. Or you can order state-specific forms and instructions by sending $5 to:
Legal Counsel for the Elderly
American Association of Retired Persons
P.O. Box 96474
Washington, DC 20090-6474
Be sure to note that you are ordering state-specific guidebook about advance directives and mention the state in which you live.
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Sign your documents. The law in most states requires you to sign your document (or direct someone else to sign it for you) in the presence of two witnesses who are 18 or older. Different states have different requirements about who can serve as a witness. Some states require the witness not be related to you, not be entitled to any part of your estate, and/or not be directly financially responsible for your health care.
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Have your documents notarized, if your state requires. In addition, some states require you to sign the form in front of a notary public. If you are in a hospital or skilled nursing facility, some states require you to sign the form in the presence of a health care professional; check with the hospital or facility regarding the person who is required to be present.
There are some cases in which your medical power of attorney may be revoked (again, these rules vary by state):
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If your spouse is your agent and your marriage ends, the document will no longer be valid. You'll need to complete a new medical power of attorney, naming anyone you want, including your former agent (your former spouse), as your agent.
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You can revoke your medical power of attorney at any time by destroying or defacing it, or signing and dating a written revocation, or orally revoking it in front of a witness, who must sign and date a written confirmation of such. Destroying all copies of the old one and creating a new one is the best way to revoke your medical power of attorney; make sure you give a copy of the new one to your health care professional and anyone else who received the old one.
Living Wills
In a living will-also known as a declaration or an instruction directive-you state your wishes about life-sustaining medical treatments if you are unable to communicate. This document is especially important if you don't have someone to appoint as your health care agent. It is a written document in which you exercise your right to accept or refuse treatment. Most states require that two physicians record on your medical record that you are terminally ill, or permanently unconscious with no reasonable expectation of regaining significant cognitive function-before this document will go into effect in directing health care professionals to provide only the types of treatment you designate.
Some living will forms, in particular the 'Five Wishes' living will distributed by the non-profit organization Aging with Dignity, go one step further to also specify, in addition to your wishes for your medical care, your personal, emotional and spiritual wishes. Check the Aging with Dignity Web site, located at Agingwithdignity.org, for more details.
To complete a living will, you can start with a standard form, which, again, varies by state based on different state statutes. A health care facility, a lawyer, a physician and some Internet sites such as the National Hospice and Palliative Care Organization, located at www.caringinfo.org, can provide you with a form specific to your state. Discuss the content of the form with your family, health care professional, and the person you've given medical power of attorney. You can add or modify language to reflect your wishes more accurately.
The American Medical Association (AMA) suggests that you first identify your values about issues such as independence, disability, living environment, health care costs and religious beliefs about health care and dying-and use them to guide your decisions about what you want your medical treatment to accomplish. (See Questions To Ask section.)
It's important to learn about the kinds of life-sustaining treatment you might receive. Examples of some of the basic treatments the standard living will covers include artificial nutrition, artificial hydration and respirators. (Some states have special rules about artificial nutrition and hydration.) It's also important to identify the types of conditions in which you might not want your life artificially prolonged, for example, if you have Alzheimer's disease.
Remember you can add further instructions about treatments not mentioned on your particular form, as well as write a statement to the effect that your agent should decide how to interpret or apply your living will.
The law usually requires you to sign your document (or direct someone else to sign it for you) in the presence of two witnesses who are 18 or older. Different states have different requirements about who can serve as a witness. Other key points to remember:
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Some states require the witness not be related to you, not be entitled to any part of your estate, and/or not be directly financially responsible for your health care. In addition, some states require you to sign the form in front of a notary public.
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If you are in a hospital or skilled nursing facility, some states require you to sign the form in the presence of a health care professional; check with the hospital or facility regarding the person they require to be present.
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You can revoke your living will at any time by destroying or defacing it, or signing and dating a written revocation or orally revoking it in front of a witness who must sign and date it. Destroying all copies of the old one and creating a new one is the best way to revoke your living will; make sure you give a copy of the new one to your physician and anyone else who received the old one.
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To make changes to your living will after it has been signed, you may have to complete a new document.
Special Considerations For Pregnant Women
If you are pregnant at a time in which your living will would go into effect, different laws may apply in your state. Some states do not honor a pregnant patient's living will; others only honor it if it contains and you initial a special statement that you would like it honored even if you are pregnant. Even then, if your fetus is viable, the state may not honor your living will. Since some of these restrictive provisions may be unconstitutional, it is a good idea to include in the living will your preferences in the event of pregnancy.
Do Not Resuscitate Orders
When your heart stops beating, health care professionals perform cardiopulmonary resuscitation (CPR) in an attempt to restart it and restore your breathing. CPR doesn't always work; in seriously or terminally ill individuals, CPR may only partially work, leaving the patient brain-damaged or in a worse medical state than before the heart stopped. In some cases, CPR offers more burdens than benefits, and may be against the patient's wishes; these patients may decide they prefer to be cared for without aggressive efforts at resuscitation when their heart stops.
A Do Not Resuscitate (DNR) order tells health care professionals such as doctors, nurses and emergency medical personnel not to perform CPR. A DNR order is a decision only about CPR (typically including procedures such as defibrillation as well as artificial respiration and chest compression) and does not relate to any other treatment. Patients in hospitals, nursing homes and at home can have DNR orders, and DNR orders are recognized by health care professionals, clergy, lawyers and others as medically and ethically appropriate under certain circumstances.
Before making any decisions about a DNR order, you should speak to your health care professional about your overall health and the benefits and burdens CPR would provide for you. You can have a DNR order entered into your hospital or nursing home chart by simply asking your physician; or you can consent to a DNR order as part of a living will or medical power of attorney, or certain states may have a special DNR consent form.
If you consent to a DNR order and then change your mind, you can remove the consent by telling your health care professionals, nurses, or others.
If you become unable to decide about CPR and you never made your wishes known in advance, a decision about CPR will be made for you by the person who you've selected to make health care decisions on your behalf in your medical power of attorney. In most states, two physicians must come to the determination that you cannot decide, and give you an opportunity to object before any advance directive, not just a living will, is effective.
Resources
Aging with Dignity
PO Box 1661
Tallahassee, FL 32302-1661
Phone: 1-888-5-WISHES
Fax: 850-681-2481
http://www.agingwithdignity.org
Individual copies of "Five Wishes," an easy to use living will that addresses not only end-of-life medical wishes but also personal, emotional, and spiritual needs. Individual copies cost $5.00 each.
American Medical Association (AMA)
515 North State Street
Chicago, IL 60610
Phone: 312-464-5000
http://www.ama-assn.org
The AMA promotes professionalism in medicine and sets standards for medical education, practice, and ethics. The AMA's work includes the development and promotion of standards in medical practice, research, and education; strong advocacy agenda on behalf of patients and physicians; and the commitment to providing timely information on matters important to the health of America.
Commission on Law and Aging
American Bar Association
740 Fifteenth Street, NW
Washington, DC 20005-1019
Phone: 202-662-8690
Fax: 202-662-8698
Email: abaelderly@abanet.org
The ABA Commission on Legal Problems of the Elderly (CLPE) is dedicated to examining the law-related concerns of older persons. Established by the American Bar Association in 1978, the Commission has explored legal issues surrounding long-term care, surrogate decision-making, individual rights, guardianship, housing, social security, elder abuse, and other public benefit programs.
Legal Counsel for the Elderly (LCE)
American Association of Retired Persons
601 E Street, NW
Washington, DC 20049
Phone: 202-434-2120
Fax: 202-434-6464
http://www.aarp.org
LCE has state-specific guidebooks about advance directives. You can obtain up-to-date state-by-state information about advance directives, along with statutory forms, if they exist in your state. If you want to order a booklet, send $5.00 per booklet (for shipping and handling) to the above address.
National Hospice and Palliative Care Organization
1700 Diagonal Road, Suite 625
Alexandria, Virginia 22314
Phone: 1- 800-658-8898
Fax: 703-837-1233
http://www.caringinfo.org
http://www.nhpco.org
The National Hospice and Palliative Care Organization (NHPCO) is the largest nonprofit membership organization representing hospice and palliative care programs and professionals in the United States. The organization is committed to improving end of life care and expanding access to hospice care with the goal of profoundly enhancing quality of life for people dying in America and their loved ones. It offers free templates for a variety of advance directive documents via phone, mail or at its Web site.
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Create Date: 12/2/02
Date Last Updated: 12/16/05
Review Date: 2/2/05
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