Putting Your Affairs in Order: Advance Directives

An advance directive is a statement in which you describe how you want to be cared for should you become incapable of making your own deci­sions. Specific examples of advance directives are durable powers of at­torney, DNR orders, and living wills.

Assigning Durable Power of Attorney/Choosing a Health Care Agent

Many people want to provide for the possibility that they might become unconscious or mentally incapacitated. They worry about their ability to hire help, give medical consent, sign their checks, pay their bills. Such an eventuality can be provided for by naming someone as your agent, giving him or her the power to make decisions for you. This power is called the durable power of attorney.

These powers differ according to the state; some states do not ac­cept durable powers of attorney. Usually, however, you can give these powers to anyone you trust who is over 18 years old; that person can be a friend and need not be a spouse or relative. In general, a durable power of attorney gives that person the legal authority to sign on your behalf if you are unable to do so. That authority can cover a broad range of functions, including most financial and medical matters. You may want to assign a durable power of attorney if you have a long-term partner whom you wish to have make decisions; when not otherwise designated, most states recognize family members, rather than friends, as decision makers.

The durable power of attorney begins either when you decide it will—even before you become incompetent—or when you become in­competent. Incompetence is defined as it was with the right to informed consent: it is the inability to make informed decisions based on the in­formation available to you. Two physicians decide the point of incom­petence. To assign a durable power of attorney, however, you must be in capacity; that is, you must be able to make informed decisions.

There are two kinds of durable power of attorney: durable power of attorney for health care and durable power of attorney for financial matters. The two are not the same. A person to whom you give durable power of attorney for your finances cannot give medical consent. Be­cause you specify what jobs you want the person with durable power of attorney to have, you can give medical and financial powers to the same person or to different people.

Durable power of attorney for health care/health care agent. The per­son to whom you give a durable power of attorney for health care must be at least 18 years old and willing to serve as your agent. It is recom­mended that you choose someone who knows you and knows your wishes. Health care professionals—physicians and nurses who are in­volved in your care—are not considered appropriate.

The document assigning a durable power of attorney for health care generally contains the following: a statement that you are creating a durable power of attorney for your health care; the name of the person and any alternate person to whom you are giving durable power of at­torney for health care; the conditions under which this document be­comes effective; a statement of what authority you are granting this per­son; and a list of specific wishes. The durable power of attorney generally takes effect when two physicians, including the physician-of-record, cer­tify that you are not capable of understanding or communicating deci­sions about your own health; it will apply as long as this condition con­tinues.

This document can give the person with durable power of attorney the authority to withhold or withdraw any treatments or procedures— including mechanical ventilation (respirators or breathing machines), dialysis (artificial kidneys), antibiotics, operations—that sustain life.

The document assigning durable power of attorney for health care must be dated and signed by you, and by two witnesses who are not in­terested parties. It is wise to have the document notarized by a notary public; some states may require this.

The original of the document assigning a durable power of attorney for health care should be kept by you or by your lawyer or by someone you trust. Copies of the document should be given to the person to whom you assign durable power of attorney, to any alternate person, to your physician, and to members of your family. You may wish to con­sult your physician when drawing up the document. Laws on durable power of attorney for health care change often, so it is wise to review the document annually.

Lawyers, hospital legal offices, and the state can provide examples of such documents that meet state laws.

Durable financial power of attorney. Much of what applies to the durable power of attorney for health care also applies to a durable fi­nancial power of attorney. One difference between the two is in the re­sponsibilities held by the person with the durable power of attorney.

The person with durable financial power of attorney for you can pursue anything to do with business or banking, including signing checks, opening bank accounts, signing promissory notes, selling prop­erty, transferring property, signing proxies, or pursuing lawsuits.

As with the durable power of attorney for health care, the durable financial power of attorney is in effect when you decide it should be, or if two physicians declare you incapable of understanding and commu­nicating. It continues in effect only so long as you remain incompetent.

You may revoke either of the above documents at any time by tear­ing up the document.

DNR Order

A DNR (do not resuscitate) order is an order your physician writes, di­recting that if you are near death, you are not to be revived. Your physi­cian should discuss this order with you or with your surrogate. People with advanced HIV infection may reach a stage in the disease when ei­ther they or their physicians question whether to continue medical treat­ment. Medical treatment has a great deal to offer people with HIV in­fection, including those in advanced stages of the disease, but we would deceive you if we implied that people do not sometimes reach a point where the quality of life becomes questionable. For some people, that point might be dementia; for others, it is emaciation, or repeated or in­capacitating complications of HIV infection; and for some, it is simply the inability to do the things that make life meaningful.

These are the points at which people consider DNR orders. The word resuscitate in DNR specifically means cardiopulmonary resuscita­tion, or CPR. Cardio (heart) pulmonary (lungs) resuscitation (revival) means reviving a person whose heart stops beating (cardiac arrest) or whose lungs stop breathing (pulmonary arrest). All hospitals and most medical facilities have the equipment—including machines for chest compression and heart shock (defibrillation), drugs, and respirators— to respond instantly to cardiac or pulmonary arrest. The DNR order means, then, that if you have reached the point where you question the quality of life and if you suffer cardiac or pulmonary arrest, you order that you not be revived.

The decision to carry out DNR orders is based on your medical con­dition and on the quality of your life. Your medical condition is evalu­ated by your physician and the evaluation is based on the disease, the stage of disease, prior treatment, and the response to that treatment. Your quality of life can be evaluated only by you, based on your own unique values.

The decision about DNR orders should depend on several factors. One is how demanding the medical treatment to be withheld would be. For example, while intravenous fluids and commonly used antibiotics place few demands on either the hospital or the patient, dialysis, respi­rators, total intravenous nutrition, and major operations are consider­ably more demanding. Other factors affecting the decision include the likelihood of response, alternate treatment options, and the potential for relieving symptoms like pain. For example, questions that you might raise in the event of lung failure are, What is the likelihood of survival without the respirator? What is the likelihood of being able to get off the respirator once being put on it? What kind of treatments can be of­fered if you get over this hurdle? Will there be pain either with the res­pirator or without it? Is it likely that the condition causing lung failure is temporary and can be cured?

If you are medically competent (see above) and are 18 years of age or older, you might consider making a decision about DNR orders. It is probably best to deal with this issue at a time when you and your physi­cian can discuss the whole issue to your satisfaction and when you don’t need to make fast decisions in compromised circumstances. Physicians are encouraged to discuss DNR orders with anyone who has a serious medical condition, but many are understandably reluctant to do this. If your physician does not discuss DNR orders with you, you might wish to bring up the subject.

If you are not conscious or have been declared medically incompe­tent by two physicians, then your representative can discuss DNR or­ders with your physician. Who your representative is varies from state to state. Typically, your representative will be, in rank order, your dura­ble power of attorney/health care agent, your guardian, your spouse, your children aged 18 or older, your parent, or your brother or sister. Your representative should make decisions about DNR orders based on your anticipated desires, not on his or her own desires.

Most people have strong opinions about such decisions, and they worry that they will not be able to make rational choices at the time the choices need to be made. Two ways of dealing with such decisions in ad­vance are to assign a durable power of attorney for health care (see above) and to make health care instructions (see below).

Living Wills and Other Health Care Instructions

A living will is a legal document outlining your decisions about treat­ment to sustain your life should you be unconscious or incompetent. Laws about living wills vary from state to state. The living will is some­what different from the durable power of attorney for health care: the person with your durable power of attorney for health care, when faced with the decision of whether to prolong your life, will usually decide to prolong life. The living will or health care instruction provides that per­son with your specific instructions for making this decision. The person with your durable power of attorney for health care can also make de­cisions that may not have been foreseen in your living will.

Living wills, unlike regular wills, apply only to medical treatments. The actual form and scope of a living will is established by state laws. In general, living wills specify which types of treatment you wish to have or wish not to have. Living wills also specify the physical and mental states in which you do or do not want these treatments. These treatments include transfusions, support on a respirator, operations, and resuscita­tion. Some states have no provision for living wills. Other states that do provide for living wills do not allow any restrictions on food and water.

In most cases, a living will applies only after the person becomes in­competent and has a terminal condition. In some states, a living will ap­plies to both terminal conditions and a kind of permanent coma called a vegetative state; in other states, a living will applies only to terminal conditions.

A living will might be written as follows:

In the event that I have an incurable disease and I am certified to be in a terminal condition by two physicians who have personally ex­amined me—including one who shall be my attending physician— and these physicians have determined that my death is imminent and will occur whether or not life-sustaining procedures are used; and where application of such procedures would serve only to artificially prolong the dying process, I direct that these procedures be withheld or withdrawn, and that I be permitted to die naturally with only the administration of medication, food, and water, and any additional procedure necessary to give comfort and alleviate pain. In the ab­sence of my ability to give directions regarding the use of such life­sustaining procedures, it is my intention that this declaration shall be honored by my family and physicians as the final expression of my right to control my medical care and treatment.

To make a living will, obtain a sample document from your lawyer, from your state attorney general’s office, from a hospital legal office, or from a social worker. The content of the living will may be discussed with your physician to assure the use of proper terms and to include likely decisions. The living will must be dated and signed by you and by two witnesses. You must be at least 18 years old and competent. The witnesses must be at least 18 years old, must not be related to you, must not be financially responsible for your care, and may not be your health care provider; witnesses may, however, be connected with the facility providing your care. You or your representative should give your physi­cian a copy of the living will. You should also forward a copy to the med­ical records department at the hospital where you receive care, so that the copy can be included in your permanent record. You may revoke the will at any time, preferably by a written statement, but also by destroy­ing the living will and notifying any persons—including the physician— who retain copies.

Stipulating What Happens to Your Property

Most people stipulate what happens to their property by making a will. No one requires that you do so. If you die without a will (called dying intestate) your property goes automatically first to your spouse and then to your nearest living relatives. Your property will not go to friends or to unmarried partners. To assign property to friends or unmarried part­ners, you must make a will.

Wills apply mostly to property—money, house, car, furniture, clothes. Wills do not necessarily legislate any of your other wishes. Life insurance benefits will go to the beneficiary, even if the will states oth­erwise. In principle, a will may specify what your funeral arrangements are and whether you’d like to be buried or cremated, but in practice, wills are often not read until after the funeral.

Over a certain value, property left in a will is taxable. You can min­imize taxes your beneficiaries will pay by setting up trusts or by giving to them a certain amount of money per year while you are still alive. Nei­ther trusts nor gifts under a certain dollar amount are taxable.

Trusts and annual gifts also ensure that you will have property to leave. Some people, rather than use their property to finance their own medical care, decide to put it into trusts or give it to the people they love. Once they are impoverished, their medical bills will be paid by public assistance programs. Leaving your property in trust or as a gift must be done years before you need extensive medical care: Medicaid/Medicare will check to see if money or property has been given away in recent years. To find out how and when to leave your property, see a lawyer or a financial planner. A will can also be used to specify who has control over your body when you die. This may be important to you if you want a friend or companion, rather than your family, to bury you.

A lawyer is the best source of information regarding what happens to your property. Lawyers also often draw up wills. State laws set the forms for wills, however, and if you know the form, you can draw up your own will.

Providing for Hospice Care

Some people want to decide where they will die. Some choose to die at home; some would rather leave their homes as a place for the living, so choose to die elsewhere. In either case, they may choose hospice care.

A hospice can be either a place or a concept, that is, either a building or a program dedicated to care of the dying. Hospice programs can be run through hospitals, nursing homes, or private organizations. Nursing agen­cies, like the Visiting Nurse Association, often also provide hospice care.

Both private insurance policies and medical assistance provide some level of reimbursement for hospice care, providing the requirements of the hospice are met. To find a hospice or hospice program, ask your doc­tor or nursing agency or hospital social worker. Your doctor can advise you on when to consider hospice services.