Health Care Decisions
164 | A Legal guide for Lesbian and Gay Couples related topic AIDS referral organizations. The AIDS epidemic has been responsible for the incapacity and deaths of thousands of people. AIDS has made people aware of their mortality and their need to be responsible to themselves and their loved ones. Chapter 11 provides information on organizations that provide legal assistance or referrals for people with HIV or AIDS. Terminal Illnesses and Hospices All over the country, hospice programs help terminally ill people maintain control over how they live and, ultimately, die. There are over 2,000 hospices in the United States Cancer patients make up the highest proportion of hospice patients. In addition, thousands of AIDS patients use hospices each year. Typically, the terminally ill person stays at home, where care is provided by family, close friends, and medical professionals through the home hospice program. Some hospices provide housing for terminally ill patients just before death. Special counseling is given to the terminally ill person and those close to him. Hospice programs help ensure that a terminally ill person gets the type of medical care he wants. For example, if a patient is opposed to being connected to respirators or other life support systems, a hospice can provide alternatives, or just provide pain relief. Information about hospices throughout the country can be obtained from the National Hospice and Palliative Care Help Line, 800-658-8898. Health Care Decisions The increasing use of life-sustaining medical technology has raised fears that our lives may be artificially prolonged against our wishes. But the right to die with dignity, in one’s own time, has been addressed and confirmed by the U.S. Supreme Court, the federal government, and the legislatures in every state. chapter 6 | medical and Financial Matters: delegating authority | 165 The United States Supreme Court has ruled that every individual has the constitutional right to make medical decisions without interference. The Court also has held that medical personnel must follow “clear and convincing evidence” of a person’s wishes—even if the patient’s family opposes those wishes. The same right to choose or refuse medical treatment protects against the situation where doctors might wish to provide a patient with less care than the partner would like. For example, a doctor may be unwilling to try experimental treatments or maintain long-term treatments on a patient who the doctor feels has slim chances of recovering. And an insurer or HMO might not want to provide even minimal treatment to a patient who seems likely to die soon. Below we explain the legal documents you can use to establish control over your health care if you become incapacitated. While these matters can seem dry or technical, the underlying reality is anything but. You are making choices that are profound and deeply personal, and may be wrenching at the time you make them. While it’s vital to prepare these documents, it’s equally vital to proceed carefully. Take time to understand your own desires and your options. And take time to discuss your decisions with whomever you appoint to act for you. Documents Protecting Choice About Medical Care Every state has laws authorizing individuals to create medical care documents that provide the “clear and convincing evidence” of that person’s wishes concerning life-prolonging medical care. Validly prepared and executed, these documents are binding on medical personnel and institutions. There are two basic types of documents. You should prepare both: • specific written directions—called a “living will,” declaration, or health care directive—that describe the medical care you want (and don’t want) if you can no longer express your wishes; • written authorization—usually called a durable power of attorney for health care, or sometimes a health care proxy or patient advocate designation—that names a person you choose to supervise 166 | A Legal guide for Lesbian and Gay Couples implementation of your expressed wishes and to make other medical decisions for you, and describes the circumstances under which the person may act, such as if you are mentally incapacitated. Some states combine the two types of documents into a single form. For instance, California’s single form is called an “Advance Health Care Directive.” Most medical care documents are drafted to provide that the person creating them must be incapacitated and unable to make medical care decisions before the documents become effective. In legalese, this is called a “springing” document or power, because it only springs into effect if and when it’s needed. Caution Determination of incapacity. Traditionally in our culture, mental incapacity must be determined by a doctor. So a durable power of attorney for health care generally states that a doctor must sign a written statement of a person’s incapacity in order for the document to become effective. As anyone who has visited a doctor’s office in the last few years has learned, a federal law (the “Health Insurance Portability and Accountability Act,” commonly referred to as HIPAA) now imposes patient privacy rights on health care providers. HIPAA rules also govern the release of a patient’s medical information, including a doctor’s statement that a patient has become incapacitated. What this means, practically, is that every durable power of attorney for health care must contain a provision specifically authorizing doctors to make a determination of incapacity, and, if necessary, releasing any of the medical records needed or used in making that determination. The forms in this book include that provision. You can impose further limits on when your health care documents become effective by restricting them, say, to when you are in a coma or have a terminal condition. But these limits may be overly restrictive. If you cannot or do not want to make your own medical decisions, even if you’re not in a coma or in a terminal condition, you will want the person you’ve named to be able to make decisions for you. chapter 6 | medical and Financial Matters: delegating authority | 167 Differences Among Types of Medical Care Documents The difference between the two types of documents described in the previous section—a declaration and a durable power of attorney for health care—is simple. The declaration or living will is a statement you make directly to medical personnel that spells out the medical care you do or do not wish to receive if you become incapacitated. It functions as a contract with your treating doctors, who must either honor your wishes or transfer you to other doctors or a facility that will. In a durable power of attorney, you appoint someone else (called your “attorney-in-fact” or “agent”) to see that your doctors and health care providers give you the kind of medical care you want. You usually also give your attorney-in-fact the authority to make medical care decisions on your behalf when you can’t make them yourself. In some states, you can give your agent broader authority to make decisions on your behalf, such as when to hire and fire doctors. When Your State Form Is Not Enough When it comes to medical care forms, there are many differences in the documents and formats used by different states. Some state laws require that a specific form must be used for a directive to be valid. Because the Supreme Court has ruled that every individual has a constitutional right to direct his or her own medical care, however, the most important thing for you to keep in mind is that your directions should be clear and in writing. If you feel strongly about a particular kind of care—even if your state law or the form you get does not address it—it is a good idea to include your specific thoughts in your written document. If you are using a state form that does not adequately address your concerns, write them in on the form with the additional request that your wishes be respected and followed. 168 | A Legal guide for Lesbian and Gay Couples Caution It’s best to use your state’s forms. Each state has its own specific rules and requirements for making medical care forms. With a durable power of attorney for health care, you must use your state’s forms. With a living will, you may have a constitutional right to create your own form, but there’s no good reason to start from scratch. Begin with your state’s form, which is fine for most people. If you want to be more specific than your state form provides for, you can insert additional provisions into that form. Where to Get Medical Care Documents You can obtain medical care documents free or for a nominal fee from a number of sources, including: • local senior centers • local hospitals (ask to speak to the patient representative; by law, any hospital that receives federal funds must provide patients with appropriate medical care forms) • your regular physician, • your state’s medical association, and • Quicken WillMaker Plus software from Nolo. Californians can also use Living Wills & Powers of Attorney for California, by Shae Irving (Nolo). What to Include in a Medical Care Form The problem many people have in filling out their state medical directive forms is that they are not sure how to fill in the blanks—and are not sure what much of the terminology means. Generally, in your directive, you can: • specify whether or not you want your life prolonged with medical treatment and procedures, and • identify specific medical treatments and procedures that you want provided or withheld. chapter 6 | medical and Financial Matters: delegating authority | 169 In an Emergency: DNR Orders In addition to your living will and durable power of attorney for health care, you may want to prepare a “do not resuscitate” order, or DNR order. A DNR order is used for the specific purpose of alerting medical personnel to the fact that you do not want to receive cardiopulmonary resuscitation (CPR) in the event of a medical emergency. You may want to consider a DNR order if: • you have a terminal illness • you are at increased risk for cardiac or respiratory arrest and feel you wouldn’t want CPR if you became ill, or • you have strong feelings against the use of CPR under any circumstances. In most states, any adult may secure a DNR order. But a few states allow you to create an order only if you have been diagnosed as having a terminal illness. If you want a DNR order, or you want more information about DNR orders, talk with a doctor. A doctor’s signature is required to make the DNR valid— and in most states, the doctor will obtain and complete the necessary paperwork. If the doctor does not have the information you need, call the health department in your state and ask to speak with someone in the division of emergency medical services. If you sign a DNR order, discuss your decision with your partner or other caretakers. They should know where your form is located—and who to call if you require emergency treatment. Even if you are wearing identification, such as a bracelet or necklace, keep your DNR order in an obvious place. Consider keeping it by your bedside, on the front of your refrigerator, in your wallet, or in your suitcase if you are traveling. If your DNR order is not apparent and immediately available, or if it has been altered in any way, medical personnel who attend you will most likely perform CPR and other life-prolonging techniques. 170 | A Legal guide for Lesbian and Gay Couples However straightforward this may seem initially, preparing a medical care form can be difficult. First, you need to understand some basics about what kind of care you can select or prohibit. Then comes the often more wrenching task of facing up to what some choices may involve. For instance, do you want to allow, prohibit, or require that water or food be artificially administered to you through tubes if you are near death? If you prohibit this, you may die from dehydration or starvation. All of the choices you make have consequences that are difficult to predict. Below, we discuss the basic types of life-prolonging medical treatment. To make an informed decision about which procedures you do and do not want, we suggest discussing your medical directive with your physician, who can explain the medical procedures more fully and discuss the options with you. You will also find out whether your doctor has any medical or moral objections to following your wishes. If the doctor will not agree to follow your wishes, you can choose to change doctors. The following medical procedures and treatments are usually considered to be “life prolonging.” Blood and blood products. Partial or full blood transfusions may be recommended to combat diseases that impair the blood system, to foster healing after a blood loss, or to replenish blood lost through surgery, disease, or injury. Cardiopulmonary resuscitation. CPR is used when a person’s heart or breathing has stopped. CPR includes applying physical pressure, using mouth-to-mouth resuscitation, using electrical shocks, administering intravenous drugs to normalize body systems, and attaching you to a respirator. Diagnostic tests. Diagnostic tests are commonly used to evaluate urine, blood, and other body fluids and to check on all bodily functions. Diagnostic tests can include X-rays and more sophisticated tests of brainwaves and/or other internal body systems. Dialysis. A dialysis machine is used to clean and add essential substances to the blood—through tubes placed in blood vessels or into the abdomen—when kidneys do not function properly. Drugs. The most common and most controversial drugs given to seriously ill or comatose patients are antibiotics—administered by mouth, chapter 6 | medical and Financial Matters: delegating authority | 171 through a feeding tube, or by injection. Antibiotics are used to arrest infectious diseases. Drugs may also be used to eliminate or alleviate pain. Because high doses of pain control drugs can impair respiration, such drugs sometimes hasten death in a seriously ill patient. Respirator. A mechanical respirator or ventilator assists or takes over breathing for a patient by pumping air in and out of the lungs. These machines dispense a regulated amount of air into the lungs at a set rate— and periodically purge the lungs. Patients are connected to respirators by a tube that goes through the mouth and throat into the lung or is surgically attached to the lung. Surgery. Surgical procedures are often performed, even on people who are terminally ill or comatose, to stem the spread of life-threatening infections or to keep vital organs functioning. In addition to life-prolonging procedures, you may want to include in your directive your wishes about comfort care and artificially administered food and water. Comfort care. The laws of many states exclude pain-relieving procedures from definitions of life-prolonging treatments that may be withheld through a health care directive. If that was all there was to it, most people would agree with this and welcome the relief. But the medical community disagrees over whether providing drugs to make a person comfortable or alleviate pain will also have the effect of prolonging the person’s life. Some people are so adamant about not having their lives prolonged when they are comatose or likely to die that they direct that all comfort care and pain relief be withheld even if a doctor thinks those procedures are beneficial. Other people are willing to have their lives prolonged so that discomfort or pain will be treated. Artificially administered food and water. If you are close to death from a terminal condition or in a permanent coma and cannot communicate your preferences, it is possible that you will also not be able to voluntarily take in water or food through your mouth. The medical solution is to provide you with food and water—as a mix of nutrients and fluids— through tubes inserted in a vein, into your stomach through your nose, or into your stomach through a surgical incision. 172 | A Legal guide for Lesbian and Gay Couples Intravenous feeding, where fluids are introduced through a vein in an arm or a leg, is a short-term procedure. Tube feeding through the nose (nasogastric tube), through the stomach (gastrostomy tube), intestines (jejunostomy tube), or largest vein, the vena cava (total parenteral nutrition), can be carried on indefinitely. Similar to the controversy over comfort care, medical experts are split over whether artificial food and water prolongs life or is medically necessary. Other options to be considered. You may want to include one or more of the following: • naming the primary physician you want responsible for your care, if you have an established relationship with a doctor you trust • specifying whether you wish to donate organs, tissues, or other body parts after death, or • authorizing your attorney in fact to decide where you should live, if you are incapacitated and can no longer live at home. You can also add more specific directions of where you would like to be moved to, or other housing desires. Even when you have specified your wishes regarding life-prolonging medical treatment and comfort care in a living will, certain decisions may still be difficult. They may include: • when, exactly, to administer or withhold certain medical treatments • whether to provide, withhold, or continue antibiotic or pain medication, and • whether to pursue complex, painful, and expensive surgeries that may serve to prolong life but cannot reverse the medical condition. Moreover, despite your living will, some medical personnel may prove reluctant to comply with your wishes. Or they may want interpretation as to how to apply your wishes to a specific situation. For all these possible reasons, you want to appoint someone with legal authority to enforce your wishes and decide any newly arising medical issues for you. That person, appointed in your durable power of attorney for health care, is generally called your “attorney-in-fact.” To help the appointed person carry out your decisions, the power of attorney may include specific authorizations: chapter 6 | medical and Financial Matters: delegating authority | 173 • to give, withhold, or withdraw consent to medical or surgical procedures • to consent to care for the end of life, including pain relief • to hire and fire medical personnel • to visit you in the hospital or other facility even when other visiting is restricted • to have access to medical records and other personal information, and • to get any court authorization required to obtain or withhold medical treatment if a hospital or doctor does not honor the document. Choosing Your Attorney-in-Fact The most important factor in choosing your attorney-in-fact is to select a person you totally trust. Most readers will choose their partner, but are not required to do so, even if you are legally married or partnered. If your partner or spouse can’t serve because of health reasons or because of reluctance or inability to be a strong advocate, be sure you pick a person who truly understands you and your life, and whom, of course, you can rely on totally. You should also appoint an alternate attorney-in-fact, in case your original choice cannot serve or continue to serve. Make it clear that the second person is only a backup. It is not a wise choice to appoint two people to do the job together; that is likely to complicate the process. Caution Do not appoint your doctor or any medical personnel as attorneyin-fact. Although your doctor is an important person for your attorney-in-fact to consult concerning all health care decisions, you should not appoint your doctor to act as attorney-in-fact. The same holds for all medical personnel. The laws in most states forbid treating physicians and medical personnel from acting in this role—to avoid the appearance that they may have their own interests at heart and may not be able to act purely according to your wishes. 174 | A Legal guide for Lesbian and Gay Couples Important Terms Principal: The person who creates and signs the power of attorney document, authorizing someone else to act for him or her. If you make a durable power of attorney for health care or finances, you are the principal. Attorney-in-Fact: The person who is authorized to act for the principal. In many states, the attorney-in-fact is also referred to as an agent of the principal. Alternate Attorney-in-Fact: The person who takes over as attorneyin-fact if your first choice cannot or will not serve. Also called successor attorney-in-fact. Durable Power of Attorney: A power of attorney that will remain in effect even if the principal becomes incapacitated, or will take effect only if the principal becomes incapacitated. Incapacitated: Unable to handle one’s own financial matters or health care decisions. Also called disabled or incompetent in some states. Usually, a physician makes the determination. Springing Durable Power of Attorney: A durable power of attorney that takes effect only if a physician determines that the principal cannot handle his or her own financial affairs. In some states, this document may be called a conditional power of attorney. The form included in this book gives you the option of making your power of attorney springing. Preparing Your Health Care Documents You do not need to consult a lawyer to prepare a living will, durable power of attorney for health care, or other medical care form. While you may have to make difficult decisions about what types of care you want or do not want, these are not legal issues. It is wise to discuss what you want in depth with your attorney-in-fact. In grim reality, making a medical decision for a loved one can be confusing, painful, and difficult. You want chapter 6 | medical and Financial Matters: delegating authority | 175 your attorney-in-fact to understand as much as possible what you want so that you both can be certain the decisions made are the right ones. What to Do With Your Completed Documents Once you have completed the documents directing your medical care, there are several steps you should take. Signing, witnessing, and notarizing. Follow your state’s requirements for making your documents valid. Every state requires that you sign your documents—or direct another person to sign them for you—as a way of verifying that you understand them and that they contain your true wishes. Most state laws also require that you sign your documents in the presence of witnesses. The purpose of this additional formality is so that there is at least one other person who can attest that you were of sound mind and of legal age when you made the documents. Some states also require that you and/or the witnesses appear before a notary public and swear that the circumstances of your signing, as described in the documents, are true. In some states, you have the option of having a notary sign your document instead of having it witnessed. Notarized health care documents are more likely to be honored in other states than documents that are merely signed and witnessed. Making and distributing copies. Ideally, you should make your wishes for your future health care widely known. Keep a copy of your medical documents, and give other copies to: • any physician with whom you now consult regularly • any attorney-in-fact or health care proxy you have named, including any backup • the hospital or other care facility in which you are most likely to receive treatment, and • any other people or institutions you think it’s wise to inform of your medical intentions, such as a hospice program.