- Facts to Know
- Questions to Ask
- Key Q&A
- My health care professional told me I need a procedure that is "routine," and said, "Don't worry, nothing ever goes wrong." I'm just not so sure. What should I do?
- The consent form the hospital asked me to sign said my surgery could cause "death" and/or "loss of limb," etc. Should I sign it?
- I'm still in the prime of my life and quite healthy. Why do I need to worry about advance directives?
- I filled out advance directives—now what?
- Organizations and Support
What Is It?
Basic legal health care tools, such as medical powers of attorney, living wills and other forms of advance directives, ensure that your wishes concerning your medical care will be carried out, even if you become seriously ill or unable to make decisions.
How would I like to be cared for if I were to become seriously or suddenly disabled and unable to express my wishes? Most of us assume we need to think about this only when we're elderly, though some of us helping elderly parents have begun thinking about it already. The stakes may be even higherfor younger people; if tragedy were to strike, 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 family members as default decision makers or surrogates? Problems can arise when family members don't 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 make for 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 if 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.
Even though lawyers and health care professionals are good resources for this kind of information, they are not required 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.
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 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:
- a description of the recommended treatment or procedure as well as alternative treatments or procedures
- a description of the risks and benefits of the recommended and alternative treatments or procedures, especially risk of death or serious disability
- the probability of the success of the treatment—as well as the definition of "success"
- their experience caring for similar conditions or offering similar treatments, particularly if your condition or the proposed treatment is uncommon
- the likely results should you decide to refuse any treatment
- the major problems anticipated in recuperation, including how long it will be until you can resume your normal activities
- any side effects that may be particularly damaging to you personally
- 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.) There are additional consent forms for surgery and invasive tests and procedures. The details of consent forms vary from hospital to hospital, but some general advice holds true in most cases:
- Read whatever you sign carefully
- 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.
- Remember that, even if you have signed a form, you have the right to withdraw consent orally at any time if you do not want a particular test or treatment.
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 if you become unable to speak for yourself. Two legal documents—a medical power of attorney and a living will —are the main 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 health care 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 if you want 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 add a DNR to your medical record while you are in the hospital, keep in mind that it is only valid in the hospital.
If you create advance directives, here are a few things to remember:
- Discuss all advance directives in detail with your loved ones, your health care professional and your lawyer. Make sure they understand your wishes.
- Communicating well and making your wishes clearly known to the people who will be caring for you during a serious illness are more important than anything the law provides for your protection.
- While it is a good idea to use the legal forms approved in your state because health care providers will be familiar with them, you do not have to use a state-specific form to exercise your rights as long as your wishes are clear.
- 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:
- Keep the original signed copies of these documents in a safe but accessible place—not in a safe deposit box at the bank.
- Give photocopies to your family, close friends, clergy, health care professionals and anyone else who might become involved in your health care.
- 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.
- The federal Patient Self-Determination Act 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, so that you both feel comfortable that decisions will be consistent with your beliefs and morals.
Steps in Granting Medical Power of Attorney
- Choose a health care agent. To complete a medical power of attorney, you must first choose an agent, who can be a family member or close friend. The person you name as your agent cannot be a health care professional involved in your care, unless that person is a close relative. 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.
- 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.
- Have your documents notarized, if your state requires. 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):
- 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.
- 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.
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 nonprofit organization Aging with Dignity, go one step further to also specify your personal, emotional and spiritual wishes. Check the Aging with Dignity Web site at Agingwithdignity.org, for more details.
To complete a living will, you can start with a standard form, which, again, varies based on different state statutes. A health care facility, a lawyer, a physician and some Internet sites such as National Hospice and Palliative Care Organization (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.
When putting together your living will, you should 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 to sign it for you) in the presence of two witnesses who are 18 or older. States have different requirements about who can serve as a witness. Other key points to remember:
- 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.
- 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.
- You can revoke your living will at any time by destroying or defacing it, by signing and dating a written revocation or directing someone you trust to sign and date a revocation for you, or by 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.
- 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 when your living will would go into effect, in many states, your living will won't be valid.
Do Not Resuscitate Orders
When your heart stops beating, health care professionals begin cardiopulmonary resuscitation (CPR), consisting of artificial respiration and chest compressions. They also may administer medications and electric shocks, insert an endotracheal tube and perform other maneuvers in an attempt to restart your heart and restore your breathing. However, brain damage from lack of oxygen may already have occurred, and other serious medical problems may have become worse. Therefore, some ill or elderly patients may decide they prefer to be cared for without aggressive efforts at resuscitation if 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 or attempt to restore breathing and circulation. A DNR order is a decision only about CPR and procedures such as defibrillation and endotracheal intubation 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. It is particularly important for you and/or your medical decision maker to have this conversation with your physician before you undergo surgery, because your physician will not necessarily know whether or not you want a DNR order to apply during and immediately after surgery. 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. 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 may be made for you by the person whom you have 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 becomes effective.
Facts to Know
- There are two main types of advance directives: medical power of attorney and a living will (and, in some states, special rules for the patient's "Do Not Resuscitate" consent).
- 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 a legal document in which you name a person to make medical decisions for you any time you are unable to make your own medical decisions.
- Keep in mind that you do not have to use a state-specific form to exercise your right to refuse treatment as long as your wishes are clear.
- Unless your state has requirements about instructions for particular types of care (for example, artificially administered nutrition and hydration), it's best not to add instructions to a medical power of attorney because in doing so you may unintentionally restrict your agent's power to act in accordance with your wishes.
- In a living will—also known as a declaration or an instruction directive—you state your wishes about life-sustaining medical treatments if you become unable to communicate. It is a written document in which you exercise your right to accept or refuse treatment.
- Some living wills, in particular the "Five Wishes" living will distributed by the nonprofit organization Aging with Dignity, go one step further to also specify your personal, emotional and spiritual wishes for end-of-life care.
- You can add or modify language in a living will to reflect your wishes more accurately.
- Use your values, goals, morals and religious beliefs as guideposts for deciding what you would want any medical treatment to accomplish.
- If you are pregnant when your living will would go into effect, your living will won't be valid in most states.
- A "Do Not Resuscitate" (DNR) order tells health care professionals not to perform cardiopulmonary resuscitation (CPR) and related procedures should your heart stop. Though these orders are most often used by people who are terminally ill or permanently unconscious, people with decision-making capacity can legally consent to a DNR even if they are not terminally ill or permanently unconscious when CPR would have been administered. You can change your mind at any time by telling a member of your health care team.
Questions to Ask
The following are Questions to Ask yourself in thinking about if and how you want to use health care planning tools such as advance directives and a living will.
- If I become terminally ill or permanently unconscious for some reason, or am aware but permanently lose decision-making capacity, as with Alzheimer's disease, do I want treatments to prolong my life, no matter what the quality of my life is then?
- If life-sustaining treatment cannot restore me to consciousness or restore my ability to communicate with family members and friends, would I rather stop treatment?
- To what degree should I weigh the cost to my family in my decision-making process about prolonging my life in certain irreversible situations, such as terminall illness or permanent unconsciousness?
- What will happen if I am conscious but mentally incompetent?
- What is important to me about the manner in which I die? Is it important for me to die at home?
- What role do I want my health care professional or health care team to play in decisions about my medical care if I become seriously ill or disabled?
- Whom do I want to serve as my health care agent should I become seriously ill or disabled? Can I trust that this person will carry out my wishes even if they run counter to the person's own?
My health care professional told me I need a procedure that is "routine," and said, "Don't worry, nothing ever goes wrong." I'm just not so sure. What should I do?
The first thing you need to do is get more information. Using the list under the section titled "Informed Consent,"ask your health care professional as many questions as you need to be comfortable with your care. Do not undergo any treatments or procedures you don't understand or for which you don't know the risks.
The consent form the hospital asked me to sign said my surgery could cause "death" and/or "loss of limb," etc. Should I sign it?
There are risks involved in any type of surgery. While the risk may be slim, some people have, in fact, died during very routine procedures. That's why the hospital has built these statements into their consent form. Your health care professional should have discussed with you in detail the risks and probabilities of success of your treatment. If you don't feel comfortable with this particular type of surgery, based on that discussion, talk to him or her in detail about alternative treatments and their risks and probabilities of success. Be sure to find out what might happen if you choose not to get any treatment, and weigh your choices carefully.
I'm still in the prime of my life and quite healthy. Why do I need to worry about advance directives?
Unfortunately, tragedies happen every day to healthy people in the prime of their lives. Have you considered what would happen if a car accident, for example, left you permanently unconscious? The emotional and financial burdens on your family could be enormous. In some cases, family members would feel powerless to "pull the plug" even though that's what you may have preferred over being unconscious for, perhaps, decades. It's much easier to make these decisions if you have spelled out your wishes in advance.
I filled out advance directives—now what?
It's one thing to have completed advance directives, but if no one knows they exist, they'll do you no good. Tell your close family and friends of their existence and where you plan to keep them—in a safe place but not in a safe deposit box because it wouldn't be accessible by anyone but you. Also, give a copy to your health care professional and ask that it be put in your medical records. Others you might consider sharing your advance directives with are your lawyer and your clergy. Remember that if for some reason you execute new advance directives, you should give copies of the new ones to everyone to whom you gave old copies, and destroy the old ones.
Organizations and Support
For information and support on Legal Health Tools, please see the recommended organizations and books listed below.
California Women's Law Center
Address: 6300 Wilshire Blvd., Suite 980
Los Angeles, CA 90048
National Patient Advocate Foundation
Address: 725 15th Street, NW, Tenth Floor
Washington, DC 20005
Health Care for Lesbians and Gay Men: Confronting Homophobia and Heterosexism
by K. Jean Peterson
How to Write Your Own Living Will: With Forms
by Edward A. Haman
Planning for Uncertainty: A Guide to Living Wills and Other Advance Directives for Health Care
by Dr. David John Doukas MD and Dr. William Reichel MD
Power of Attorney Handbook
by Edward A. Haman
Surveys show that about one-third of transgender people have been refused treatment or suffered verbal or physical abuse from a medical provider