Advance Directives

Advance directives center around the principles of your right to die and death with dignity. With an advance directive, you can express how much or how little you want done for you when you are no longer able to make these decisions.

• Advance directives are a way of making your voice heard when you can no longer communicate. They allow you to appoint someone to make your health care decisions for you when you no longer can and to administer or withhold treatment and procedures based on your previously stated wishes. Advance directives are not just for the elderly. All people who desire to direct their medical care in the future should complete an advance directive.
• All 50 states and the District of Columbia have laws regarding advance directives. Authorities also agree that no difference exists between withholding lifesaving treatment and withdrawing life-support treatment. This is especially important in a situation where someone is resuscitated despite his or her wishes because the advance directive could not be found and the person is put on life support. Once the advance directive is shown to health care professionals, life-support measures can be withdrawn according to the advance medical directive.
• An advance directive does not mean "do not treat." This is a common misperception and not correct. Of course, if you want it to mean do not treat, then that is something that your surrogate needs to know.
• Proper execution of an advance directive is a delicate task. A person should discuss this with loved ones and consider personal values and beliefs.
• It is also impossible to think about all the possible medical and social scenarios that may happen in the future during the course of a disease and person's lifetime. Thus, people often change their minds contrary to their living wills while still capable of making their own decisions. Living wills can be modified to reflect any such changes.

Advance directives: An advance directive is a written document or series of forms that must be signed to be binding. The documents indicate an individual's choices about medical treatment.

Two types of advance directives are generally completed: a living will and a medical power of attorney (also referred to as designation of a health care surrogate or health care proxy).

• Living will: This written statement tells health care professionals what type of life-prolonging treatments or procedures to perform if someone has a terminal condition or is in a persistent vegetative state. Living wills should not be confused with a regular will. A living will addresses issues regarding your medical care while you are still living.
• Medical power of attorney (or designation of a health care surrogate): This legal document allows you to select any person to make medical decisions for you if you should become temporarily or even permanently unable to make those decisions for yourself. This person is also referred to as your attorney-in-fact or durable power of attorney for health care. Most people choose a family member, a relative, or a close friend as their surrogate decision maker. It is important that the designated person knows and understands your wishes and preferences and has a written copy of either your living will or medical power of attorney.

Life-prolonging treatments: These are procedures that are not expected to cure your terminal condition. They generally are used to sustain life. Examples of life prolonging treatments include mechanical ventilator (breathing machine), kidney dialysis, and cardiopulmonary resuscitation (CPR).

Terminal condition: A terminal condition is an incurable (without cure) condition that is in its terminal stages.

Persistent vegetative state: This permanent coma or state of being unconscious is caused by injury, disease, or illness. No reasonable expectation of recovery exists.

Do not resuscitate (DNR): This document tells health care professionals and emergency personnel that if your heart stops beating (cardiac arrest) or if you stop breathing (respiratory arrest) that they are not to attempt to revive you by utilizing CPR, chest compressions, intubation, or shocking the heart.

Artificial nutrition and hydration: This procedure is the administration of nutrition and fluids through IV lines and feeding tubes. IV (intravenous) hydration is a common proactice in the hospital by which fluids are delivered into veins. Tube feeding introduces liquid food through a nasal or oral tube into the stomach. Sometimes intravenous (IV) antibiotics are also included in this category. The POLST form (Physician Orders for Life-Sustaining Treatment) addresses the patient's preferences regarding artificial hydration and nutrition. This form can be signed by the patient or their decision maker and the treating physician.

Advance medical directive becomes effective only when a patient is no longer able to make their own decisions due to mental incapacity. This could be temporary or permanent. If temporary, the patient resumes decision making responsibilities once the temporary condition resolves.

Common situations in which a person may be temporarily or permanently unable or incapable of making complex judgment or end of life decisions are

• coma (from any cause);
• stroke (if it results in coma or cognitive deterioration);
• moderate or severe dementia (Alzheimer's or other types);
• persistent vegetative state;
• severe illness requiring placement on breathing machine and inability to communicate;
• severe medical conditions such as advanced liver failure or kidney failure;
• traumatic brain injury resulting in the inability to make complex decisions.

An advance directive is purely optional. All health care facilities such as hospitals that accept federal funding are required by law to ask if you have one and offer you the appropriate information and documents to sign one, if you so choose.

• You should consider an advance directive if any of the following are true:
  • You want to be sure your voice is heard when you can no longer communicate.
  • You want to be sure that your wishes are respected and followed in the event that you are unable to make medical decisions for yourself.
  • You want to be sure that your wishes about the use of life-support machines or other life-prolonging treatment are followed if you suffer from a terminal condition.
  • You want to be sure that, if you fall victim to a cardiac arrest after you have suffered with a long-term, end-stage medical condition, cardiopulmonary resuscitation (CPR) or other heroic measures will be performed or not performed according to your values and preferences.
• No doctor or health care professional can force you to complete an advance directive.
• If you do not complete an advance directive, then you will receive medical care to the fullest extent appropriate for your condition. In these situations, your next of kin automatically becomes your surrogate decision maker.
• It is often easier for family members and next of kin to make end-of-life decisions for a patient when the patient's wishes have been clearly delineated. The emotional pressure, feeling of guilt and grief about making the wrong choice, and uncertainty about the patient's own preferences can be overwhelming for the loved ones. Even if a legally executed living will is not done, it is important for family members and loved ones to specify their wishes in case of terminal medical conditions.
• If you cannot speak for yourself and you do not have an advance directive, then health care professionals will look to the following people, in the order listed, for guidance with your care:
  • Your guardian (if court appointed)
  • Your spouse
  • Your adult child (or the majority of adult children who are reasonably available)
  • Either of your parents
  • Your adult brother or sister (or the majority who are reasonably available)
  • Other adult relatives
  • A close friend who is familiar with your activities, health, or religious or moral beliefs
  • Caregivers
  • A court-appointed or state-assigned conservator in cases where no relative or friend exists to guide medical decision making (conservators may be previously assigned to a patient, otherwise this could be a very lengthy legal process)
  • Primary care physicians or attending physicians are in rare cases asked to comment or decide on a patient's behalf and in patient's best interest if all efforts have been exhausted to find a surrogate decision maker.

• A lawyer may be helpful with the completion of these matters, but one is not required.
• You can designate information regarding organ donation in most advance directive documents.
• You can withdraw, change, or revoke your advance directive at any time you choose.
• The laws regarding advance directives vary from state to state. Legal experts agree, however, that most states will honor an out-of-state advance directive if it meets legal requirements in the state that it was executed.
• Give copies of your advance directive to people who may be called on to act as or identify your surrogate.
  • In the untimely event of a medical emergency, those closest to you will need to know where the papers are in order to provide them to the medical personnel.
  • Without legal paperwork, emergency personnel must do everything possible to attempt to revive someone.
• A living will does not mean the withholding of pain medications or other comfort measures. The living will is a way to express your wishes for medical treatment and, if the situation warrants, die with dignity. Pain medication and comfort measures are provided whenever required to minimize suffering and make the dying as comfortable as possible.

The best place for information on advance directives is to start with your family doctor. Your doctor is able to discuss your medical condition, treatment options, and procedures, as well as outline what would happen in certain situations. Your doctor should also be able to supply you with the necessary paperwork to properly complete an advance directive.

• Other resources available include your local hospital, library, attorney, hospice, or long-term care facility.
• Partnership for Caring: Necessary forms for each state can me obtained online at the organization's web site or by calling 1-800-989-9455.
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