Your right to make decisions about your own health care and the conditions under which you want medical treatment to continue or stop is protected by both the US Constitution and by individual state law. Mentally competent adults have the right to refuse or accept medical treatments, even those that will save or prolong their lives. However, people sometimes become unable to make their own medical decisions because of illness or injury. Even when this happens, you still have the right to refuse or accept treatment. One way to keep your rights is by writing down your wishes about your future health care choices in what is called an "advance directive."
An advance directive is a legal document that states your wishes about health care choices or names someone else to make those choices if you become unable to do so. An advance directive can be simple or complex. In other words, it can be general with little direction about care, or it can be very specific, detailing your wishes regarding acceptance or refusal of all types of life-sustaining treatments. The advance directive may also include a statement about organ and tissue donation.
Advance directives can be used only for decisions about medical care; in other words, no one will be able to control your money or other property based on your advance directive. Also, it takes effect only if you become unable to make your own decisions. Others can make health care decisions for you without an advance directive, but a written advance directive offers greater assurance that your wishes will be carried out.
All people receiving medical care in hospitals, enrolling in health plans, and entering into hospice or home care agreements must be given written information on their state's laws concerning their rights to make decisions about medical care. This includes the right to accept or refuse medical or surgical treatment. In addition, you should receive information about your right to make an advance directive.
Types of Advance Directives
The two most common types of advance directives are the living will and the power of attorney for health care, sometimes called the durable power of attorney for health care. All states and the District of Columbia recognize and have laws about advance directives. However, state laws vary, and the exact names of documents, restrictions, and formalities also vary from state to state. You can usually get forms for advance directives from your state bar association or from the American Bar Association.
The basic requirements for advance directives are usually the same, but this may vary from state to state. The minimum age is usually the age that the state defines as an adult. All states require that at least one adult not related by blood, marriage, or adoption witness the signature and date on the advance directive. Some states require two witnesses. A notary public may serve as a witness.
In addition to the basic advance directive, you have two other options:
- An oral advance directive is a verbal statement made by a person who is physically unable to obtain a living will or power of attorney for health care. This statement is written by someone else (for example, your doctor), and properly witnessed. Several states recognize such statements as formal advance directives.
- A mental health directive defines a person's choices about treatment in the event that he or she becomes seriously mentally ill and is unable to make health care decisions.
The Patient Self-Determination Act (PSDA)
The Patient Self-Determination Act (PSDA) encourages all people to make their own decisions now about the type of medical care they wish to receive. It requires all health care agencies (hospitals, long-term care facilities, and home health agencies) receiving Medicare and Medicaid reimbursement to recognize the living will and power of attorney for health care as advance directives. Under the PSDA, health care agencies must ask you if you have advance directives and must give you materials with information about your rights under state law.
The Living Will
A living will is a document that directs the doctor about certain types of medical treatment, such as life-sustaining procedures (those that will keep you alive) or artificial life-support. The living will usually states that life-sustaining measures should be withheld or withdrawn if you are near death and unable to make those decisions and choices.
A living will is usually more limited than a power of attorney for health care. It covers fewer conditions and treatments and is not as strong as a power of attorney for health care because it contains only written instructions. It does not name anyone to interpret the document or to ensure that your wishes will be carried out.
What Is a Life-Sustaining Medical Treatment?
Each state defines life-sustaining medical treatment differently. In general, life-sustaining medical treatment is anything mechanical or artificial that sustains life and would prolong death for someone who is seriously ill and not expected to recover. Life-sustaining medical treatment may include the following:
- Cardiopulmonary resuscitation, or CPR (reviving a person when they stop breathing or their heart stops pumping)
- Artificial respiration (mouth-to-mouth breathing, manual breathing, or using a ventilator to breath for the person)
- Medicines to artificially change blood pressure and heart function
- Artificial nutrition/hydration (such as giving tube feeding or fluids in the vein)
- Dialysis (using a kidney machine)
- Certain surgical procedures (amputation, feeding tube placement, removal of tumor, organ transplant)
Food and water are not usually defined as life-sustaining unless they are provided by a feeding tube or intravenous line. Medicines or procedures necessary to provide comfort or ease pain are not usually considered life-sustaining procedures but, rather, as comfort measures or palliative care.
The Power of Attorney for Health Care
A power of attorney for health care, often called the durable power of attorney for health care, is a document in which you direct someone you choose (a health care proxy or surrogate decision-maker) to make all health-related decisions if you become unable to do so. This person negotiates on your behalf with doctors and other caregivers and is required to make decisions according to your directions. In a health care power of attorney, you can indicate the specific kinds of treatments or procedures you do or do not want. If your wishes in a particular situation are not known, your decision-maker will make decisions based on what they think you would want and what they consider to be in your best interest.
The person named as the decision-maker should be someone you trust to carry out your wishes. It is also a good idea to name an alternate person in case the primary person becomes unable or unwilling to act on your behalf. The law does not allow the decision-maker to be a doctor, nurse, or other person providing health care to you on the date the power of attorney for health care is signed unless that person is a close relative. If you choose to appoint someone to make decisions on your behalf, be sure to discuss your wishes in detail with that person.
Frequently Asked Questions
When Should I Make an Advance Directive? The time to make an advance directive is before you are in a situation in which you would need one. In other words, before you become too sick to make your own choices and decisions about what medical care you want to receive or refuse. Young people as well as older people should consider making an advance directive.
What Happens When I Have an Advance Directive? If you have an advance directive and cannot make your own medical decisions, these decisions will be made for you by your chosen decision-maker according to the types of medical care you said you wanted in your advance directive. However, your advance directive will only be useful if the doctor treating you knows that you have one.
How Will My Doctor Know That I Have an Advance Directive? If you have an advance directive, tell people close to you that you have one and where it is kept. Give copies of your advance directive to your decision-maker, family members, or friends who would be contacted should you become seriously ill. Do not keep your advance directive locked up where no one can find it. It is up to you, your decision-maker, or a family member to give a copy of your advance directive to your doctor. Federal law requires hospitals, nursing homes, and other health care agencies to ask at the time of admission whether or not you have an advance directive. However, if you are unable to answer that question or if the advance directive is not available, it may not be included in your medical record where it can help guide care according to your wishes.
Must My Doctor Respect My Wishes as Written in My Advance Directive? No. If a doctor or health care agency objects to your advance directive based on reasons of conscience, state law permits the doctor or agency to refuse to honor it. Agencies must notify you of such policies at the time of admission to the agency. If a refusal occurs, the doctor and agency should help you transfer your care to a doctor who will honor the directive.
What Happens if I Do Not Have an Advance Directive? If you do not have an advance directive, you may receive medical care that you do not want. In the absence of an advance directive, the doctor will ask your family about your treatment. The spouse (unless legally separated) is asked first, followed by adult children, parents, and adult brothers and sisters, in that order. However, it is not uncommon for family members (especially distant family members) not to know what a loved one would have wanted. In addition, family members may disagree on certain aspects of your care. In some situations, a court may appoint a legal guardian to make health care decisions if you do not have an advance directive. This is why it is important to express your wishes in a written advance directive ahead of time and to discuss your wishes with those close to you.
Does Having an Advance Directive Affect My Care? Having or not having an advance directive will not affect the quality of your care. Certain cure measures may be withheld as stated in your advance directive.
Can I Change My Mind about What Is Written in My Advance Directive? Yes. Once you make an advance directive, most states allow you to change or revoke it at any time, regardless of your physical or mental condition. If possible, changes should be signed, dated, and witnessed. It is also a good idea to inform your decision-maker, family, and doctor if you change or cancel your advance directive. Some states require that you notify your doctor in writing when you make changes to your advance directive.
Is My Advance Directive Valid if I Am at Home? Someone who is dying but who is not a patient in a health care agency may face problems in having an advance directive honored in an emergency. Some states have addressed this issue by allowing 911 emergency medical service (EMS) providers to refrain from resuscitating seriously ill patients who are certified as having a "do not resuscitate" order written by a doctor. Some states require that home-bound patients who want their advance directives honored wear a special bracelet that indicates "do not resuscitate." This is something that you should ask your local doctor and EMS about.
What Is a "Do Not Resuscitate" Order? Do Not Resuscitate, or DNR, is an order written by a doctor telling the health care team taking care of you that CPR is not to be used if your heart or breathing suddenly stops. Advance directives often include instructions not to start CPR, but this may be difficult to honor in emergencies when no one is aware that you have an advance directive. If you do not want to receive CPR, your cancer care team can give you a bracelet to wear that will alert emergency and hospital personnel of your wishes.
What Are "End-of-Life Decisions"? End-of-life decisions are those decisions you can make about how you wish to be cared for and treated when you are dying. End-of-life decisions can include whether to accept or refuse life-sustaining treatments. An advance directive is one way to share your end-of-life decisions with others,
What Is "Euthanasia"? The word euthanasia comes from a Greek phrase meaning a gentle and easy death. Euthanasia is defined as any action or lack of action that causes death with the purpose of ending suffering due to illness. Euthanasia occurs when a patient is very sick and not expected to recover and voluntarily chooses (verbally or in writing) to end his or her life in order to avoid prolonged suffering. The act of euthanasia is illegal in the United States.
Euthanasia should not be confused with assisted suicide. Physician-assisted suicide provides a patient with the means of taking his or her life and instruction in how to do so, such as by taking a lethal drug dose. In the United States, it is legal only in Oregon. Hospice and palliative care do not promote assisted suicide. In general, hospice and palliative care experts recognize requests for assisted suicide as a sign that more intensive palliative care is needed. They intensify their efforts to treat symptoms and work to improve the quality of a patient's remaining life. However, where assisted suicide is legal, palliative care team members will continue to care for the patient and their family when assisted suicide is their choice.
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