Consumer Guide To Advance Directives


How to plan for healthcare decisions in case you become seriously ill and are unable to speak for yourself


One of your basic rights is the right to make decisions about your healthcare

One of your basic rights as a competent adult patient is the right to make decisions about your healthcare. After your doctor informs you about your condition and available treatment options, you have the right to accept or refuse care.

This right is especially important today. Modern medicine can often prolong the lives of people who are terminally ill or severely incapacitated with no hope of recovery. In such cases, some patients would decide to have life-support procedures withheld or withdrawn so they are allowed to die. They might want to avoid prolonged suffering or existence in an incapacitated condition, or treatment that would make the dying process seem less dignified.

Others would choose to have every available form of treatment in order to be kept alive as long as possible.

What would happen, though, if you became severely ill and lost your ability to make decisions about your healthcare?

When you are unable to make decisions?

When patients are unable to understand information about proposed treatment and to make reasoned decisions, they are considered to be incapacitated.

If you become incapacitated, your doctor will talk with your family members or others, or refer to written instructions you have prepared, to try to find out what treatment you would want or would be in your best interest.

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Planning ahead

If you want to make sure your preferences are followed if you become incapacitated, it is important for you to plan ahead. By planning for yourself you can also ease the burden of decision-making that could fall upon members of your family.

Even if you never have to rely on others to make decisions for you, you can benefit from thinking ahead about end-of-life care. Healthcare decisions, especially those concerning withdrawal of treatment, are difficult and may require much thought and discussion. By beginning to think about possible situations and options before a crisis, you will have time to gather information and make decisions thoughtfully.

Begin planning by learning about healthcare decisions you may face, and by clarifying your own thoughts and feelings. You may find it helpful to talk with friends, family members, clergy, and healthcare providers as well.

Then make decisions about the kind of care you would want if incapacitated. Under what circumstances would you or would you not want your life prolonged? Are there certain procedures you would want to receive or refuse? Who would you want to make decisions for you? What should they consider in making choices?

After you have made decisions concerning treatment, there are several ways you can express your preferences so they are known in case you are ever unable to state them. The most important thing you can do is talk to people who may be called upon to make decisions for you. You can also state your wishes in writing by creating advance directives such as the Living Will, Durable Power of Attorney for Healthcare, and Organ Donor Card.

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Talking to people close to you

The most important thing you can do is talk to people who may be called upon to make decisions for you.

Physicians usually rely on family members to consent to medical care for patients who cannot make decisions for themselves, so it is extremely important for you to talk with relatives about your preferences. Besides making it possible for your family to honor your wishes, this kind of communication may help family members avoid conflict.

The "Substitute Consent" law defines which family members and others may act as substitute decision-makers for an incapacitated patient. The act says that physicians must seek consent to care from people in the following classes, in the order of priority listed:

  1. the appointed guardian of the patient, if any;
  2. the person to whom the patient has granted a Durable Power of Attorney for Healthcare;
  3. the patient's spouse;
  4. the patient's children who are at least eighteen years old;
  5. parents of the patient; and
  6. adult brothers and sisters of the patient.

If the doctor cannot locate any qualified person who is willing to make a decision about care, a guardianship proceeding may be initiated. The law gives guardians certain powers regarding healthcare decision-making. A guardian may assert the patient's right to refuse life-sustaining treatment if certain conditions are met, including agreement of family members.

When there are two or more individuals in the same class, the decision to consent or refuse consent to care must be unanimous. If you anticipate disagreement among family members, you might want to designate one person to act as the decision-maker with a Durable Power of Attorney for Healthcare, described below.

In addition to talking with family members, you should be sure to tell your doctor about your preferences. It is a good idea to discuss these issues when you choose your doctor, to be sure that your approaches are compatible.

Even if you prepare written instructions regarding care you wish to receive, make it a point to tell your family and doctor about your feelings. The most carefully prepared document may not anticipate every question that comes up, or may not be available during a crisis. Decision-makers may need to rely on their personal under standing of your wishes.

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The Living Will

In addition to talking to others, you can express your wishes in writing. One of the documents you can create is the Living Will.

The Living Will is a directive to doctors and families declaring a person's decision to refuse life-sustaining medical treatment in the event of terminal illness or injury or becoming permanently unconscious. Although the directive allows your doctor to withhold or withdraw life-sustaining treatment, comfort care will continue to be provided. The Living Will does not authorize "mercy killing" or any procedure that would actually speed up the natural process of dying. A sample Living Will is available.

In 1992, the Natural Death Act was amended and broadened in a number of ways. Previously the definition of "terminal condition" was quite narrow. Under the revised statute death no longer has be "imminent." Life-sustaining treatment can be withheld or withdrawn where persons have incurable and irreversible conditions that will cause death in a reasonable period of time. Artificial nutrition and hydration are recognized to be life-sustaining treatments that can be withdrawn or withheld.

The model living will form now reflects changes in the Natural Death Act and addresses withdrawing or withholding of life-sustaining treatment in the event of persistent vegetative state or irreversible coma. The law also says that individuals can add to or delete provisions in the standard Living Will. You are encouraged to complete a new Living Will form if you have done one prior to 1992.

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Durable Power of Attorney for Healthcare

Compared to the Living Will, a Durable Power of Attorney for Healthcare may allow you to more fully express your wishes concerning care.

The Durable Power of Attorney for Healthcare is another means for stating wishes concerning care.

Many people use a Durable Power of Attorney for Healthcare instead of, or in addition to, a Living Will. Compared to the Living Will, a Durable Power of Attorney may allow you to more fully express your wishes concerning care. It is also more broadly applicable since it can apply to nearly any type or level of healthcare during periods of incapacitation.

The Durable Power of Attorney for Healthcare is a document you can create to designate another person to make healthcare decisions on your behalf if you become incapacitated. (A sample Durable Power of Attorney for Healthcare is available).

The Durable Power of Attorney for Healthcare delegates important responsibilities to another person, so you should be sure the person you designate has a good understanding of your wishes and is willing and able to take action on your behalf.

In addition to designating a substitute decision-maker, you can use a Durable Power of Attorney for Healthcare to state your personal goals concerning care, specific procedures that should be refused, and criteria the decision-maker should consider in making choices.

Since the "substitute consent" law described earlier gives substitute decision-making authority to certain relatives of a patient, you may have no need for a Durable Power of Attorney for Healthcare. You may feel confident that the people designated as decision-makers by the law know your wishes well and would make decisions you would want. A Durable Power of Attorney for Healthcare may be especially appropriate, however, for a person who has no living relatives, who anticipates disagreement among relatives, who wishes to have decisions made by someone other than the relatives specified by law, or to assure that wishes about particular treatments are made explicit.

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Organ Donor Card

If you wish to donate organs at the time of your death, you should sign an organ donor document. If you have a signed donor document at the time of your death, the attending doctor, after consulting with your family, will call the appropriate agency to find out if there is a need for the organs you have specified. A recovery team will then remove those organs, if medically acceptable, and arrange to use them for transplantation or research.

Many organs and tissues can be recovered, including eyes, kidneys, hearts, heart valves, livers, bones, pancreas, lungs, and skin. Solid organs such as kidneys and hearts can be recovered from individuals up to age 70. Tissues such as skin and bone may be recovered from individuals ages 12­65. There are no age limits for eye/corneal donations.

Any individual of sound mind who is eighteen years of age or older may become an organ donor. Those under eighteen must have consent of their parents or guardians.

If you decide to be a donor, be sure to discuss your decision with your family, doctor, and friends. Even if you have a legal donor document, objections by next of kin can cause delay, making donation impossible.

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How to prepare advance directives and add them to your medical record

A Living Will form (Directive to Physicians) is available. If you want to prepare a Living Will, you must sign the document in the presence of two qualified witnesses. The following persons may not serve as witnesses: anyone related to you by blood or marriage, anyone entitled to part of your estate by will or otherwise, or anyone with a claim against your estate.

You do not need to see a lawyer to prepare a Living Will, although you may want advice, especially if you choose to make amendments to the standard document.

Durable Power of Attorney documents are quite flexible, and it is important that yours accurately reflects your individual needs and wishes. A sample Durable Power of Attorney for Healthcare is available, to give you an example that you may want to look at to get ideas for your own document. You may want to consult with an attorney to ensure that your document clearly states your wishes and is consistent with applicable legal requirements.

Your Durable Power of Attorney for Healthcare should be witnessed by two adults and, in some cases, notarized.

Keep the originals in your personal files. Make sure family members are aware of them and have copies. Any patient going to a nursing home should have copies of documents given to the nursing home. If you are traveling, it's a good idea to carry copies of advance directives with you.

If you ever change your mind and wish to cancel your Living Will or Durable Power of Attorney for Healthcare, you can do so either verbally or in writing. Tell your doctor, clinic, or hospital medical records department staff in person that you wish to cancel the directive, or sign and date a written statement indicating your wish to cancel your directive and send or take it to the medical records department of your area medical center. Be sure to also destroy your wallet card.

Finally, remember that the law relating to healthcare decision - making is subject to change. New legislation and court decisions may change rights we now have, and may affect documents you have created, so be alert to changes in the law.

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Checklist for planning ahead

___ Gather information and make decisions about the kind of care you would want if you were seriously ill and incapacitated. Find out about healthcare options and laws concerning advance directives and substitute decision-making.

___ Prepare documents expressing your wishes. Options include the Living Will, Durable Power of Attorney for Healthcare, and Organ Donor Card. You may wish to get advice from an attorney.

___ Discuss your wishes in detail with the person(s) you name as your agent in the Durable Power of Attorney for Healthcare, with family members, and with your physician.

___ If you complete an Organ Donor Card and indicate that you want to donate your body for research or study, make arrangements with your local medical school.

___ Give copies of your advance directives to your family or others who may be called upon to make decisions on your behalf. If you are a patient in a nursing home, be sure the nursing home has copies of your advance directives.

___ Carry your advance directive identification card in your billfold at all times.

___ Be alert to changes in state laws concerning healthcare decision-making that may affect the plans you have made.

___ Review your advance directives every five years or so. Amend them if necessary, or reaffirm that they still represent your wishes.

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