What are Advance Directives?
At some point in their lives, usually because of illness, many people will lose the ability to make medical decisions or communicate what they want from their healthcare. The legal documents that allow you to spell out your healthcare decisions ahead of time - so you continue to get the care you want and avoid treatments you do not want - are called advance directives (also known as advance care plans).
If you lose the ability to make decisions, someone will have to make decisions for you. The person you choose to make those decisions for you is known as a surrogate. Your surrogate should try to honor any wishes you discussed with them while you were still capable of making decisions. Their job is to make the decisions you would make for yourself if you were still able to do so. That’s why creating an advance directive by thinking about your priorities, discussing them with a surrogate, and writing them on a legal document is so important.
Advance directives go into effect only when you lose the ability to make decisions. (Only healthcare professionals can determine if you do or don’t have the ability to make decisions.)
Types of advance directives
There are two common types of advance directives that express your wishes about the health care you desire:
- Living wills
- Durable power of attorney for healthcare
Different states may have different names for durable power of attorney for healthcare, such as healthcare proxy or healthcare declaration.
A specific and common example of an advance directive is a “do not resuscitate” order (or DNR), which guides care only if your heart stops beating (cardiac arrest) or you are no longer breathing. Someone who chooses a DNR order may or may not choose to go without other life-sustaining treatments, including hospital or intensive care. It is best to discuss preferences regarding resuscitation in the context of your overall goals of care.
Whenever possible, your healthcare providers should respect the informed choices that you have expressed while you were still capable of making decisions. Following these advance directives demonstrates respect for you as an individual. It is a legal and ethical obligation. Advance directives can be stopped or changed orally or in writing by you at any time, as long as you maintain the capacity to make decisions.
There are 3 key steps to making an advance directive:
- Think about what treatment you would or would not want if you were critically ill or no longer able to communicate your wishes. One way to do this is to think about people you know who have been in that situation. They may be family members, friends, acquaintances, or famous people. What did you think of their treatment? Would you want that for yourself?
- Discuss your wishes with your surrogate, relatives and other people close to you and your healthcare providers while you are still able. It is never too early to have these conversations.
- Document your wishes. Your advance directives should be written down carefully so that your wishes are specific, clear, and available later if needed. They should be reevaluated and revised whenever your medical condition changes.You should provide advance directives in writing whenever possible, because written directives clearly reflect your intention to direct future healthcare and cannot be easily challenged in court.
Advance directives help patients and their families. It has been found that advance care planning helps to allow people to have improved satisfaction with their quality of care, die in their preferred place, receive less intensive treatments at the end of life, and reduce hospitalizations at the end of life. It also results in lower stress, depression and anxiety in the surviving relatives of a person who has died.
Throughout the United States, there are laws or legal opinions that authorize living wills. Generally, these laws allow you to direct healthcare providers to withhold or withdraw treatment that is keeping you alive if you become terminally ill and are no longer able to make decisions. Some examples of life-sustaining treatment include CPR (cardiopulmonary resuscitation) if your heart stops, mechanical ventilation for breathing, or artificial feeding. In a few states, an individual may also appoint surrogate decision makers through a living will. Legal immunity is given to caregivers who comply with an appropriately drafted living will.
Durable Power of Attorney for Healthcare
The durable power of attorney for healthcare is more flexible and comprehensive than a living will. It allows you to choose a surrogate decision maker (such as a friend or relative) to make your medical decisions if you lose the ability to make them yourself. You should discuss with your surrogate ahead of time the types of treatment(s) you would or would not want in specific situations so that your surrogate has some guidelines if the need arises. It is impossible to imagine all possible situations but discussing what matters most to you to have or avoid will help your surrogate make a decision based on your wishes.
Traditionally, family members, close friends, or religious community members act as surrogates for people who are not able to make their own healthcare decisions. This is probably because they know the person best, but it’s important to remember that the best surrogate is a person with whom you have discussed your preferences and who will be able and willing to act in your best interests. Not all relatives will be able to do those two things; sometimes friends or less close relatives are better choices.
Family members are also normally consulted by the healthcare provider. However, when there is no surrogate named by a legal advance directive, the healthcare provider may sometimes decide that decisions by family members are questionable because of conflicting personalities, values, or interests. In addition, some family members may be estranged or unwilling to make decisions, or they may disagree among themselves. In other cases, older adults have no surviving relatives. These are some of the reasons why it’s so important to make an advance directive and choose a surrogate before you become ill.
When you have no advance directive and there are no relatives or friends to represent you, it may be that your physician (or other healthcare provider) may ask a court to appoint a guardian to act as a surrogate (see: Guardianship)
Physician Orders for Life-Sustaining Treatment (POLST)
Physician Orders for Life-Sustaining Treatment (POLST) is a recently developed program that is designed to improve the quality of care people receive at the end of life. Although it can be used by anyone, it is best suited for people who have chronic, serious or advanced illness, are frail, or are of advanced age. The POLST effectively communicates certain medical orders based on your advance care planning wishes using a brightly colored form. It can be transferred from one care setting to another, and healthcare providers have promised to honor it. For example, when your POLST form is shown, your advance care plans will be honored by the Emergency Medical Service team (ambulance or fire personnel), staff in the emergency room, the hospital team, and nursing home staff.
Since the POLST contains a set of valid legal orders, it requires a discussion with your physician and their signature to be fully activated. When you complete the POLST, it is best to keep it at home in a visible spot, like your refrigerator, so it can be easily found by an emergency responder. Visit the National POLST Program website to find more information and to locate community or state-based POLST programs.
Problems with Advance Directives
Advance directives have limitations. For example, an older adult may not fully understand treatment options or recognize the consequences of certain choices in the future. Sometimes, people change their minds after expressing advance directives and forget to inform others. Many times, advance directives are too vague to guide clinical decisions. For example, general statements rejecting "heroic treatments" are vague and do not indicate whether you want a particular treatment for a specific situation (such as antibiotics for pneumonia after a severe stroke). In this situation, a surrogate who understands your preferences can help make the best decision for you.
On the other hand, very specific directives for future care may not be useful when situations change in unexpected ways. New medical therapies may also have become available since an advance directive was written. You, your surrogate, your family, and your healthcare provider can do a great deal to avoid these problems by discussing advance directives with each other.
Importance of communication
Good communication can solve many problems that can happen when completing advance directives. You, your healthcare provider, and your surrogate decision-maker should regularly share information about your advance directives.
- Situations that commonly develop with your specific illness or condition.
- Various treatments and treatment options.
- Your wishes, including who you choose as a surrogate decision-maker.
- The amount of responsibility that you want the surrogate to have and how you will let your surrogate know if you change your mind about something. It is also important for you to have periodic discussions about these issues with family members and friends. This will help prevent conflict and avoidable stress for them if you become very ill.
Last Updated August 2020