Myths, Facts, and FAQs about Advance Care Directives

August 13, 2020

Caribou

Caribou

August 13, 2020

An advance directive allows you to consider and express your values related to end-of-life care. It involves thinking about the decisions that might need to be made and letting family and healthcare providers know.

How much do you know about advance directives? Can you identify which of the following statements are true or false?

Myths and Facts About Advance Care Directives

You must have a living will to stop treatment near the end of life

False!

Treatment that is no longer helping can be stopped without a living will. Physicians will generally consult with your health care proxy or close family when you cannot speak for yourself. The goal is to make the decision you would make if you had the capacity to speak for yourself. However, having an advance directive can make the right decision easier and help avoid family disputes.

The durable power of attorney for health care is the more useful and versatile advance directive, because it applies to all health care decisions and empowers the person you name to make decisions for you in the way you want them made.

You have to use your state’s statutory form for your advance directive to be valid

False!

Most states do not require a particular form, but they do have witnessing requirements or other special signing formalities that should be followed.

Even if your state requires a specific form, doctors have a legal obligation to respect your clearly communicated treatment wishes in any manner or form expressed, as long as the wishes are medically appropriate.

Most official state forms are either worded too generally or include multiple choice options that may not adequately address the complex clinical circumstances you face in the future.

The critical task in advance care planning is to clarify your values, goals, and wishes that you want others to follow if they must make decisions for you, rather than trying to address every possible medical treatment. Workbooks such as The Tool Kit for Health Care Advance Planning can help you.

Advance directives are legally binding, so doctors have to follow them

False!

Advance directives are legally recognized documents and doctors must respect your known wishes, but doctors can always refuse to comply with your wishes if they have an objection of conscience or consider your wishes medically inappropriate. Then, they have an obligation to help transfer you to another health care provider who will comply. Advance directive laws give doctors and others immunity if they follow your valid advance directive.

The only reliable strategy is to discuss your values and wishes with your health care providers ahead of time, to make sure they are clear about what you want, willing to support your wishes, and document your wishes to refer back to when needed.

An advance directive means “Do not treat”

False!

No one should ever presume it simply means “Do not treat.” An advance directive can express both what you want and what you don’t want.

Even if you do not want further curative treatment, you should always be given “palliative care” which is care and treatment to keep you pain free and comfortable by addressing your medical, emotional, social, and spiritual needs.

If I name a health care proxy, I give up the right to make my own decisions

False!

Naming a health care agent proxy does not take away any of your authority. You always have the right, while you are still competent, to override the decision of your proxy or revoke the directive.

If you do not name a proxy or agent, the likelihood of needing a court-appointed guardian grows greater, especially if there is disagreement regarding your treatment among your family or between family and doctors.

Choosing a health care proxy is the most important decision you will make. It should be someone who knows you very well, with whom you have discussed your values, goals, and preferences, and who is capable of handling the decision-making responsibility as your spokesperson and advocate.

I should wait until I am sure about what I want before signing an advance directive

False!

Most of us have some uncertainty about what we would want, and our goals of care change over time. A young adult may not be ready to contemplate the end of life but that individual can think about and appoint a health care agent in case of serious accident or illness.

As one matures and faces new health conditions and family experiences, values, goals and priorities change and need to be communicated to your agent and family, and they may lead to a decision to name a new agent.

When one enters a stage of advanced illness, goals of care change again and as the end of life approaches, greater specificity about what one wants or doesn’t want becomes a greater focus of advance planning.

Just talking to my doctor and family about what I want is not legally effective

False!

Meaningful discussion with your doctor and family is actually the most important step. The question of what is “legally effective” is misleading, because even a legally effective document does not automatically carry out your wishes.

The best strategy is to combine talking and documenting. Use a good health decisions workbook or guide to help you clarify your wishes; talk with your physician, health care agent, and family about your wishes; put those wishes in writing in an advance directive; and make sure everyone has a copy.

Once I give my doctor a signed copy of my directive, my task is done!

False! You have just started.

First, make sure your doctor understands and supports your wishes, and you understand your health state, future, and options.

Second, there is no guarantee that your directive will follow you in your medical record, especially if you are transferred from one facility to another. You or your proxy should always double-check to be sure your providers are aware of your directive and have a copy.

Advance planning is an ongoing, evolving process. Review your wishes whenever any of the Five D’s occur:

  1. you reach a new decade in age

  2. you experience the death of a loved one

  3. you divorce

  4. you are given a diagnosis of a significant medical condition

  5. you suffer a decline in your medical condition or functioning

If I am living at home and my advance directive says I don’t want to be resuscitated, EMS will not resuscitate me if I go into cardiac arrest.

Usually False!

Your advance directive will usually not help in this situation. If someone dials 911, EMS must attempt to resuscitate you and transport you to a hospital, unless you have an out-of-hospital Do-Not-Resuscitate (DNR) Order.

A majority of states have now incorporated instructions about whether or not to attempt resuscitation in a special set of portable medical orders called POLST, MOLST, or by a similar name.

In states with POLST programs, health care providers should initiate discussions of goals of care and care options with patients facing advanced, progressive illness or frailty.

They should then offer to translate those wishes into a set of medical orders (i.e., POLST) addressing key critical care decisions the patient is most likely to face, such as resuscitation, hospitalization, and artificial nutrition and hydration.

Your health care providers are then obligated to make sure these portable orders travel with you across care settings and are regularly reviewed to ensure they conform to your wishes.

Advance directives are only for old people

False!

It is true that more older, rather than younger, people use advance directives, but every adult needs one.

Younger adults actually have more at stake. For example, if stricken by serious disease or accident, medical technology may keep them alive in a vegetative state for decades. Young adults should at least appoint a proxy decision-maker.

Common Questions About Advance Care Directives

Now that we’ve dispelled some of the myths, it’s time to discuss general questions that people have when facing advance directives.

When should I make an advance directive?

The best time to make an advance directive is before you need one! In other words, before you become too sick to make your own decisions about what medical care you want to take or refuse.

Young people as well as older people should think about making an advance directive. Advance directives can be changed or revoked at any time. They should be reviewed and updated if you are diagnosed with a serious illness. 

It is very important that your loved ones know that you have written an advance directive and what medical care you want in certain situations. It is not possible to plan for every medical event that could happen in your life, but you can use an advance directive as a chance to discuss difficult subjects like illness and dying. 

Through open talks with your loved ones, you can explain what is important to you and what kind of treatments you do and do not want done. This is a good thing to do at any age. It can save your loved ones from a lot of guilt, uncertainty, and conflict in the event that decisions about your health need to be made and you cannot make them. Your loved ones can help make sure that your wishes are followed, but first they must know and understand what you want.

What happens when I have an advance directive?

If you have an advance directive and cannot make your own medical decisions, these decisions will be made for you. They will be based on the types of medical care you have outlined in your advance directive and/or made by the person you chose as your agent or proxy (substitute decision-maker). It is important to make sure that your family, health care providers, and others who might be contacted know that you have an advance directive and what is in it. They also need to have a copy of the directive so that it can be used in your medical treatment.

Talk to all of your family about your advance directive. Be sure they know what you have told your proxy and your back-up proxy about your wishes if you have a health care power of attorney. There may be problems if everyone in your family does not know about or does not support the choices you have outlined in your advance directive.

Arguments, family conflicts, and emotional objections can sometimes lead doctors and hospitals to the “safest” route of care – aggressive treatment that can prolong death for a long time. This may not be the way you would want it to be.

How will my doctor know that I have an advance directive?

If you have any type of advance directive, tell people close to you that you have one and where it is kept. Give copies of your advance directive to your proxy or agent, family members, and friends who would be contacted if you become seriously ill. Do not keep your advance directive locked up where no one can find it or get to it. It is up to you, your proxy, or a family member to give a copy of your advance directive to your doctor and hospital when it is needed.

Federal law requires that hospitals, nursing homes, and other health care agencies ask at the time of admission whether or not you have an advance directive. If you are unable to answer the question or if your advance directive is not available, it may not be included in your medical record. If this happens, your advance directive may not be used to guide your care.

Does the doctor have to follow my advance directive? 

There are some times that a health care provider may reject a medical decision made by you or your proxy based on your advance directive. For instance: 

  • When the decision goes against the individual health care provider’s conscience

  • When the decision is against the health care institution’s policy

  • If the decision violates accepted health care standards 

In such cases, the health care provider or facility must tell you right away. You may be transferred to another facility that will honor your decision. 

Will my advance directive be used if I am taken to an emergency room?

Your advance directive is valid in an emergency room only if the health care providers know about it. In serious emergency situations, it may not be possible for health care workers to know that you have an advance directive before emergency medical care is given.

If a family member or friend calls Emergency Medical Services (911) at a time you cannot speak for yourself, your advance directive may not be honored. This is another reason why your family needs to know your wishes before such a situation happens.

What happens if I do not have an advance directive?

It is estimated that about 1 in 4 adults in the United States have advance directives. If you do not have an advance directive, you may get medical care that you do not want and/or the doctor may ask your family about your treatment.

Some state laws require that the spouse (unless legally separated) is asked first, followed by adult children, parents, and adult brothers and sisters. Some states do not have laws that require health care providers to check with family members, and it is not uncommon for family members (especially distant ones) to not know what you would want. Family members may also disagree on certain aspects of your care, which may cause delays or not getting the care you want. 

It is unlikely that a close friend or same-sex partner will be consulted without an advance directive naming that person as your proxy. In some cases, a court may appoint a legal guardian to make health care decisions if you do not have an advance directive. This is why it is important to express your wishes in a written advance directive ahead of time and to discuss your wishes with your doctor, proxy, and those close to you.

Do I need a lawyer to write my advance directive? 

A lawyer can be helpful, but you do not need one to write your advance directive. Some states have required forms, and all states have certain requirements. Sample forms and directives that meet your state’s requirements may be available. For more information on getting a state form for advanced directives, you can always contact a Healthcare Advisor

Can I have an advance directive in more than one state? 

Most states have their own rules about what is recognized as a valid advance directive. Some states recognize an out-of-state directive if it meets the legal requirements of the state in which you want to use it. If you want to use an advance directive in a state other than that in which you signed it, or if you want to have an advance directive in more than one state, it is a good idea to check with a lawyer in order to avoid potential problems. 

Does having an advance directive affect my life insurance? 

No. No one, including health insurance companies, can require you to have or prevent you from having an advance directive. Having an advance directive will not affect any terms of your life insurance. 

Does having an advance directive affect my health care? 

Having an advance directive does not mean you have given up your right to make any decisions about your care as long as you are able to do so. Having or not having an advance directive will not affect the quality of your care while you can make your own decisions. Treatment and comfort measures will continue to be offered.

The advance directive only takes effect when you cannot speak for yourself. At that point, certain cure measures may be withheld if that is what you requested. Any person who is mentally able can change or revoke his or her advance directive at any time. 

Can I have both a living will and a power of attorney for health care? 

Yes. You can have a living will and a durable power of attorney for health care at the same time. In most cases, you can also provide extra instructions in another type of advance directive for situations not covered by the living will. It is a good idea to make sure that the person you name as your proxy in the power of attorney for health care has copies of your living will and/or any other advance directive and understands what you want.

It is important to be sure that these documents are consistent with each other, too, so that there will be no confusion about your wishes if you become unable to make them known yourself. Some states also allow you to have a single, combined advance directive/living will document. Check your state’s requirements to find out what is legally accepted in your state. 

Can I change my mind about what is written in my advance directive? 

Yes. Once you make an advance directive, you may change or revoke it (take it back) at any time while you are competent to do so. It is recommended that you review your advance directive at least every 10 years and update it if needed.

Be sure to do update it if: 

  • You have major health change or are diagnosed with a serious illness 

  • You go through a divorce

  • You experience the death of a loved one

  • You have a decline in an existing health condition, especially if it makes it harder for you to live on your own If possible, changes should be signed, dated, and witnessed. 

You should tell your proxy or agent, loved ones, and doctor if you change or cancel your advance directive. You should also destroy all copies of the old advance directive so there is no confusion on the part of your proxy or your family. Some states require that you notify your doctor in writing when you make changes to your advance directive. 

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