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The Confusing Language Around Advance Care Planning

For people living with an advanced illness, some of their most important health decisions will come when they are not capable of participating. In nearly half of these instances, people rely on those closest to them to make decisions on their behalf. When there has been no prior planning, even close family members are no better than strangers at guessing what the patient wants. This reality increases the need for advance care planning, a decision process intended to express the wishes of someone that might not be able to do so them themselves. Unfortunately, the language used in advance care planning is unclear and confusing.

Here are some common terms with which you should be familiar:

Advance Directives (AD’s) are plans that an individual creates to guide future health care decisions.  They might be communicated orally from one person to another or they might be written down. If they are written down, they might be created in strict accordance with the statutes and rules of your state, or they might be articulated less formally. When plans are created in accordance with your state statutes, they provide some clear rights and protections. There are generally two types of state statutory documents: a living will and a power of attorney for health care. A living will provides some binary choices for cases of terminal illness when a person’s death is imminent or when they are in a persistent vegetative state. A Power of Attorney for Health Care provides a legal tool to appoint a person (and alternates) to make health care decisions on your behalf should you become unable to do so yourself. If you want the person you appoint to have full legal authority to represent you, you need to follow the rules and statutes in your state. Most states recognize a power of attorney for health care documents completed correctly in another state. A power of attorney for health care also allows you to provide special instructions or limitations for the person or persons you appoint. There are generally no restrictions on what you can and might say in this section of the power of attorney for health care.

Most experts agree that the best planning document to use is a power of attorney for health care. You should select the person you appoint to make your decisions with care; they should agree to accept this responsibility and to represent your values and interests. Moreover, they should be skilled at making complex medical decisions even in stressful situations, meaning your closest loved one might not be the best choice. When you complete the power of attorney for health care, provide the special instructions that best describe what circumstances under which you would want your values and goals to transition from using medical care to extend your life to using medical care to simply focus on maintaining your comfort.

To complete such a plan, talk to your most trusted health providers. Ask them for help and guidance selecting the most effective document to use in your area.

Do Not Resuscitate (DNRs) are medical orders specific to resuscitation. They are only in force in the setting in which they were ordered, such as in the hospital. DNR orders typically address whether to perform CPR if someone’s heart stops or goes into a dangerous rhythm and whether to intubate them (put them on a breathing machine) if they are unable to breathe on their own.

Almost all hospitalized patients are asked whether they want their “code status” to be “full,” where all CPR attempts will be made, or DNR. Other terms for DNR orders are DNAR (Do Not Attempt Resuscitation) and “Allow Natural Death” (AND). Evidence shows that the terms we use measurably affect people’s choices.

People who don’t want CPR to be attempted are sometimes hesitant to have a DNR order in the hospital, fearing that to do so might result in clinicians taking a “do not treat” approach or otherwise denying appropriate care. This is not the case, but is nevertheless something to discuss with medical providers so that everyone knows what the patient’s wishes are.

Physician-Orders for Life-sustaining treatment (POLST) forms list multiple medical orders regarding CPR that function across clinical settings (e.g. from the hospital to a nursing home). Though many states now have statutes that recognize the use of POLST forms, confusion persists because some states call them POLST, some MOLST (Medical Orders for Life-sustaining treatment), others MOST, and still others POST. Although all adults have a reason to have an AD – as no one can predict terrible accidents – POLST forms are most appropriate for those with advanced illness and less than a year to live. The forms cover wishes for CPR, but also address other decisions like what to do if the person suffers a life-threatening event that compromises their breathing or heart function. Do they want to be taken to the hospital for life-sustaining treatment? Would they want to be put on a breathing machine and go to an intensive care unit? Or would they rather be cared for in their current settings with care focused on comfort?

People are often confused about the difference between a POLST and an AD but they are distinct and work best together. Any adult should consider an AD, especially by the time they reach age 65 or if they develop an advanced illness. When an individual develops advanced illness the POLST paradigm form should be considered for greater clarity regarding preference for specific treatments and to ensure that preferences about CPR and other emergencies are recorded as medical orders to be followed in all settings of care.

While ADs are important in the continuum of care, emphasis on the process of creating them and discussion of advance care planning is crucial. The ultimate goal is both the recognition and honoring of each person’s values and goals at all decision points. This means that we need a systematic planning process that involves loved ones and close friends, the ability to capture and communicate plans over time and settings, and training for health professionals on using and updating those plans when decisions need to be made.

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