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Advance Health Care Directives 101

Overview

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"Advance Directives" and "Advance Health Care Directives" are the terms used to describe a group of legal documents which assure that your wishes about what medical treatments you do and do not want are carried out even if you become unable to communicate for yourself. 

It may be distressing to even think about writing an Advance Directive. However, without these documents:

  • You may be kept alive endlessly, at your expense, and against what you would have chosen for yourself. 
  • Someone may be appointed to speak for you who is not necessarily the person you would choose. As a general matter, even a person chosen to speak for you, including a person appointed by the court to act as a guardian, cannot end unwanted treatment unless you previously signed an Advance Directive.

Advance Directives are available for free for every state and can be written and executed without the help of a lawyer or other professional. They can easily be revoked or amended at any time. 

Types of Advance Directives

  • Healthcare Power of Attorney: A legal document in which you choose another person to make medical decisions on your behalf at any time you are unable to communicate yourself. You do not have to be terminally ill for the person to speak for you - just unable to communicate. (These documents are also called: Durable Power of Attorney for Healthcare, Healthcare Proxy, and Healthcare Agent. The person you appoint is referred to as your "agent" or "proxy".) For information about Healthcare Powers of Attorney, including who to choose as Proxy, click here.
  • Living Will: A legal document which only applies if you are both terminally ill and unable to speak for yourself.  A living will describes what you want to happen or not happen in the specific situations which are listed in the document. (Also known as: Directive To Physicians, and Healthcare Directive.) For information about Living Wills, click here.
  • Do Not Resuscitate Order (generally referred to as a "DNR"): A legal document which states you do not want to be revived if your heart or lungs stop working. A DNR does not apply if you merely have difficulty breathing. It also does not prevent any other medical treatments. Some states require a DNR order to be reauthorized periodically. For information about DNRs, click here.
  • Advance Directive for Mental Health: A legal document that provides for someone to make decisions for you if you become mentally incompetent and unable to make decisions yourself.  For information about Advance Directives for Mental Health, click here.

Things to think about with respect to advance health care directives

  • Think about what medical care you do or do not want if you become unable to speak for yourself and and there is little or no hope of recovery. 
    • One alternative is to think through what you want to happen in various specific situations such as being placed on a respirator if there is no hope of recovery. Your doctor can help clarify medical questions about alternatives people with your particular medical condition may face. 
    • If you would prefer not to focus on the specifics, just think about what you want in general. For instance, "If there is no hope for my recovery, discontinue all extraordinary measures and machines. (Do) (Do not) continue to feed me."
    • For help thinking through the various matters to consider, see the form letter put together at Stanford University by clicking here. offsite link
  • If you only execute one advance directive, make it a Healthcare Power of Attorney. Even if you execute a Living Will, it is advisable to also have a HealthCare Power of Attorney. A Healthcare Power Of Attorney is the most important document for several reasons: 
    • First, major decisions in health care are seldom black and white. A Healthcare Power of Attorney provides flexibility. 
    • Second, a Healthcare Power of Attorney gives the person you appoint the right to enforce your wishes. This is important because studies show that doctors and hospitals often ignore a patient's wishes which are expressed in a Living Will. It is easier to ignore a piece of paper than a legally empowered person who is intent on having your wishes carried out. 
  • When you execute a Healthcare Power of Attorney:
    • Choose the person who will act as your Proxy with care.  
      • The person will have to deal with your doctor, the hospital and possibly your family. 
      • Sometimes the person will have to be aggressive in enforcing your wishes. Include contact information such as a mobile phone number.
      • To learn more about who to appoint as Proxy, click here.
    • Appoint an alternate in case your first choice cannot serve or cannot be reached for any reason.  The alternate should have the same qualities you look for in the primary Proxy.
    • Discuss what you do and do not want with your Proxy and Alternate Proxy. The discussion can just be about your general values and wishes. An understanding of your values will help them determine what you would want in areas that have not been specifically discussed. If you have specific wishes, let your Proxy and Alternate know that as well. For example, you do or do not want to be placed on a respirator if there is little likelihood you will ever live without one.
  • When you are ready to execute an Advance Directive:
    • Make sure that your documents follow the law of the state(s) in which you reside. Free state specific forms are available.
    • If you travel between states: Keep in mind that Advance Directives are state specific. While a document properly executed according to the laws of your own state should be recognized in another state, there is no guarantee. Be sure your advance directives are legal in each state in which you live and/or are likely to be treated. 
      • If necessary, execute duplicate Advance Directives - one for each relevant state. Be sure they do not have any provisions which conflict with each other. Have each document notarized even if it is not required in your state just in case you end up being treated in a state that requires notarization. 
    • If you execute both a Healthcare Proxy and a Living Will: Avoid conflicts by including provisions in each document which specifies which controls in the event of a conflict.
    • Discuss your wishes with your family. 
      • If the family fights your wishes, a time and money consuming court battle could follow.  Experience has shown that the more aware family members are of your desires, the more likely they are to be followed.
      • For information about how to talk with family about your wishes if you become incapacitated and cannot speak for yourself, click here.
      • If you execute a DNR directive, let your caregivers know not to call 911 if you stop breathing outside a hospital.
  • Once you have executed an Advance Directive:
    • Let your proxy and family know that Survivorship A to Z provides information about how to enforce your advance directives in case a doctor or medical facility do not go along with your wishes. If your Proxy reviews the information now, he or she will be able to act quickly and with less emotion if the need arises. 
    • Give a copy of your Advance Directives to each of your doctors.
    • Ask your doctor or other health care professional whether she or he agrees with your wishes or at least agrees to abide by them no matter what his or her personal beliefs. It also helps if the doctor is affiliated with a hospital that will accommodate wishes such as yours. 
      • It is better to bring up the issue earlier in the relationship with a doctor rather than later. While it is possible to switch doctors at any time, it can be difficult emotionally and can be disruptive to care. In addition, the closer a person is to end of life, it is reasonable to think that other doctors will be less likely to agree to sign on. 
      • Likewise, choosing the right hospital early can avoid a fight about enforcing your wishes or a transfer to another hospital that is more compatible to your wishes.
    • If you go into a hospital:
      • Consider also executing the advance directive forms used by the hospital. In the event of an emergency, hospital personnel will know precisely what to do if hospital forms are used. If you use your own form, hospital staff is likely to seek advice from the hospital's legal team which could delay action.
      • In any event, once in your room, check with a nurse on your floor to be sure the Advance Directives are included in your chart. If you executed a Do Not Resuscitate Order, be sure it is prominently noted throughout your chart so none of the people helping you can miss it. (Some people even put a sign that says "DNR" over their bed "just in case.")
      • Confirm with your attending doctor that he or she and the hospital will comply with your wishes. If he or she won't, consider switching doctors. (It is advisable to have your next doctor lined up before firing your current doctor). If the hospital will not agree to your wishes, consider asking that the hospital agree that you will be moved to a more agreeable facility if an event you care about happen.
    • Revisit your advance directives at least once a year.
      • You can easily amend or revoke any advance directive. All you need to do to revoke a directive is to rip it up. Alternatively, cross out the wording, write on each page: the word "revoked", the day's date and sign it.
      • If your advance directive is more than a few years old, the question can easily arise whether you changed your mind about the subject. Set a note on your calendar to remind yourself to revisit your advance directives. There is no need to create a new document unless your wishes have changed. You can indicate the wishes are current by adding the then current date and signing your name. 
      • Revisit your directives sooner if there is a significant decline in your health condition or there is a change in the relationship with your Proxy or Alternate Proxy.
    • If you are Catholic: the church has affirmed your right to make your own health care decisions.
  • In case you have a concern that discussing or executing advance directives will speed the end of life: A study published in 2011 found no significant differences in survival for participants at low and medium risk of death who reported having had an Advance Directive and those who had not, and for those who had an Advance Directive in the medical record vs those who did not.

What to do with your Advance Directives 

Advance Directives are only meaningful if the appropriate people know about them.

  • Give a copy to your primary doctor and each doctor who will oversee your care in what could be a life-threatening situation. This includes doctors who will perform an out patient procedure which involves anesthesia.
  • Give a copy to each person you believe will help enforce your directives.
  • If you have an online personal health record, file a copy with your record.
  • Carry a card in your wallet to let people know you have Advance Directives and where to find them.

Store the originals of your Advance Directives in a safe place which is easy to access.

  • Let the people who are charged with enforcing your Advance Directives know where the originals are.
  • To learn about where to store (and not store) your other important documents, click here.

POLST

POLST stands for Physician Orders for Life-Sustaining Treatment Paradigm. POLST is a program for people with an advanced terminal illness. POLST is in addition to the above mentioned advance directives - not instead of any of them. POLST starts with a discussion between the patient and treating doctor about the patient's end-of-life wishes. The result of the conversations are written into a POLST form which becomes a medical action order. The idea is to be sure that a patient's wishes are followed. To learn more about POLST, including whether POLST is available in your state, go to www.polst.org offsite link

Frequently Asked Questions

NOTE:  When considering documents to cover the "what ifs" also consider executing an Advance Directive for Mental Health which covers what happens if you become mentally incompetent and a Durable Power Of Attorney, which covers your finances. Also be sure you have a valid Will. Everyone needs a Will. To learn about Wills, including low cost or free wills, click here. To learn about how to make a will challenge proof, click here


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