Many people today are worried about medical care they would be given if they should become
terminally ill and unable to communicate their wishes. They don’t want to spend months or years dependent on life-support machines, and they don’t want to cause unnecessary emotional or financial distress for their loved ones.
That’s why a growing number of people are taking an active role in their care before they become seriously ill. They are stating their health care preferences in writing, while they are still healthy and able to make such decisions, through legal documents called advance directives.
Before deciding what choices about your care at the end of life are best, you should talk over the issues involved with your family physician. Find out the laws and forms that apply in your state. Decide whether an advance directive is right for you. Here are some basic facts about advance directives to get you started on this process.h3
Formal advance directives are documents written in advance of serious illness that state your choices for health care, or name someone to make those choices if you become unable to make decisions. Through advanced directives, such as living wills and durable powers of attorney for health care, you can make legally valid decisions about your future medical treatment.
Questions about medical care at the end of life are of great concern today, partly because of highly publicized cases involving comatose patients whose families wanted to withdraw treatment. Many people want to avoid extending personal and family suffering by artificial prolongation of life if they are in a vegetative state or when there is no hope of recovery. The best way for you to retain control in such a situation is to record your preferences for medical care in advance and share your decisions with your physician, loved ones and clergyman.
Laws differ somewhat from state to state, but in general a patient’s expressed wishes will be honored. No law or court has invalidated the concept of advance directives, and an increasing number of statutes and court decisions support it.
A living will is a document in which you can stipulate the kind of life-prolonging medical care you want if you become terminally ill, permanently unconscious, or in a vegetative state and unable to make your own decisions. Many states have their own living will forms, each with somewhat different requirements. It is also possible to complete and sign a standard form from a stationary store, draw up your own form or simply write a statement of your preferences for treatment, as long as you follow the state’s witnessing requirements. A living will should be signed, dated, and witnessed by two people, preferably individuals who know you well but are not related to you and are not potential heirs or your health care providers. A number of states require a notary or permit a notary in lieu of two witnesses. The living will should be discussed and shared with your physician to make it a part of your permanent medical record. Verify that the living will is indeed in your medical record including your hospital chart. Although you do not need a lawyer to draw up a living will, you may wish to discuss it with a lawyer and leave a copy with the family lawyer.
A durable power of attorney for health care is another kind of advance directive: a signed, dated and witnessed documenQ: What is a durable power of attorney for health care? A: A durable power of attorney for health care is another kind of advance directive: a signed, dated and witnessed document naming another person to make medical decisions for you if you are unable to make them for yourself and any time, not just at the end of life. You can include instructions about any treatments you wish to avoid, such as surgery or artificial nutrition and hydration. The majority of states has specific laws allowing a health care power of attorney, and provide suggested forms. You can draw up a durable power of attorney for health care with or without the advice of a lawyer; however most states do not allow the appointed agent to act as a witness.
Historically, living wills were developed first and health care powers of attorney were designed to be more flexible and apply to more situations. Today the distinction between the two types of documents is becoming blurred. It is possible to have both a living will and a durable power of attorney for health care. Some states combine them in a single document that both describes one’s treatment preferences in a variety of situations and names a proxy.
Although it isn’t possible to specify for every possible procedure under every possible circumstance, it is possible to decide what kind of treatment you would want in most situations. There are certain common conditions (terminal, irreversible brain damage and dementing illnesses) and treatment commonly used in end-of-life situations (CPR, ventilators, artificial nutrition and hydration, dialysis and antibiotics) that can be discussed in advance.
Preferences can be clarified by thinking about and discussing with your family, friends and others your views about death, being totally dependent on the care of others, the role of family finances, the conditions that would make life intolerable to you and how artificial life support would affect the dying process. If you have questions about the kinds of procedures that are often used when illness is severe and recovery unlikely, ask your physician. It is never too early to start this decision making process, and you should not postpone it until you face serious illness. Patients need to play an active role in determining their own health care decisions.
All states legally recognize some form of advance medical directive. Even if a particular instruction in an advance directive might not be enforceable under some circumstances, it is better to express your wishes and intent in some kind of written document than not to express them at all.
You may change or revoke these documents at any time. Any alterations and any written revocation should be signed and dated, and copies should be given to your family, physician, and other appropriate people. (For substantial changes, a new living will should be written and witnessed.) Even without an official written change, your orally expressed direction to your physician generally has priority over any statement made in a living will or power of attorney as long as you are able to decide for yourself and can communicate your wishes. If you wish to revoke an advance directive at any time, you should notify your primary physician, family, clergyman, and others who might need to know. If you consulted an attorney in drawing up your document, you should notify him or her.
The majority of states have reciprocity provisions. Even in those states that do not specifically address the issue, there is a common law and constitutional right to accept or refuse treatment that may be broader than the rights identified under the state law. Because an advance directive is an expression of your intent regarding your medical care, it will influence that care no matter where you are hospitalized. However, if you spend a great deal of time in more than one state you may wish to consider executing an advance directive in those states.
If there is no advance directive by the patient, the decision is left to the patient’s family, physician, and hospital, and ultimately a judge. Usually the family, physician and hospital can reach an agreement without resorting to the courts, often with the help of a hospital ethics committee. However, many times the individual who has the authority to make the decision is not the person the patient would have chosen. There may be more restrictions on a surrogate than an appointed agent.
Many hospitals have ethics committees or ethics consultation services, one of whose functions is to help in decision making about the end of life. Physicians, nurses, social workers, lawyers, clergy, patient representatives, and some time professional bioethics discuss issues, advise on hospital policy, and review cases if there is a conflict or lack of clarity. Although they will often counsel a patient’s family and make a recommendation, the final decision is still up to the patient, the family and the physician.
Information Provided by:
Caring Connections
National Hospice and Palliative Care Organization
1700 Diagonal Road, Suite 625
Alexandria, VA 22314
1.800.658-8898