Nothing is certain in life except death and taxes. We make sure that our taxes are finished and mailed by April 15th each year to avoid penalty but many of us put off dealing with a decision equally if not more important. Death is inevitable so discussing and drafting an advanced directive should be as important as filing those tax returns and the advanced directive for healthcare only needs to be done once. We all know that the time to make decisions about what we want to happen to us if we cannot speak for ourselves needs to be made while we are of sound mind and body. However, not many of us wants to face the reality that we all will eventually die. This decision needs to be made not by people who are ill or aged. The human body begins to age and advance toward death the day that we are born. The best time to make the decisions about what we want to happen in case of illness or debilitating accident is when you are healthy and well.
It is always a surprise to me to be admitting someone to the hospital who has been battling some type of cancer for months or years and hear them tell me that they have no advance directive. They leave the issue to the doctor and the doctor is leaving the issue to the patient. No one wants to talk about death so often times the member of the health team who is inevitably left with the issue is the nurse who is then placed directly in the middle of a family filled with grief, denial, guilt, and fear.
I am of the opinion that the family practitioner is the one who should be introducing the issue to the patient at some point during a yearly physical when the patient is healthy and has time to make thoughtful decisions about how they want to be cared for and what will happen to them if they become unable to make decisions for themselves. I chose to discuss this topic to inform and educate people about how to go about putting together an advance directive and the importance of discussing those wishes with your loved ones.
There was a bill introduced to Congress in 2007 that did not pass but was sent to committee and is still sitting there. The bill intended to mandate that as part of Medicare reimbursement that patients would need to have advanced directives in place. The passage of this type of bill would force healthcare to address this issue with patients resulting in savings of Medicare payments to provide medical care to patients who cannot speak for themselves but are receiving medical treatment that they would never have wanted if the patient had been able to speak. The bill can be found at Govtrack.org http://www.govtrack.us/congress/bill.xpd?bill=s110-466 .
Additionally, the Oncology Times featured an article about this very issue. It is a part of the Health Reform plan and is an attempt to avoid starting treatment or prolonging life when the patient did not desire it. People often forget that if you have no health care directive, your physician has to consider you an full code and continue to treat you until you die regardless of your prognosis. http://journals.lww.com/oncology-times/Fulltext/2010/02100/Health_Reform_May_Push_End_of_Life_Discussion.1.aspx
An advance directive does not have to be complicated and does not require the advise of an attorney. All that is needed, depending on your state, is a few forms and a notary. There are some wonderful internet resources to help guide the layperson put together an advance directive. The following resources were chosen to provide the most detailed information to assist and educate the layperson in compiling an advanced directive. The web sites offer suggestions about how to make your wishes known to your family so that everyone involved understands what medical treatment that you want or do not want.
The Caring Info web site contains hyperlinks for each state so that you can find a form which is in compliance with each state’s particular regulations. There is an excellent article about how to choose a healthcare agent and how to make your wishes clear to them if you become incapacitated. http://www.caringinfo.org/stateaddownload
American Bar Association website at http://www.abanet.org/aging/toolkit/home.html provides a toolkit for working through the process of deciding what you want, how to talk with family and a guide to assist you in deciding what you consider to be quality of life.
US Living Will Registry http://liv-will1.uslivingwillregistry.com/forms.html
This site contains forms for all 50 states, assistance and advice about how to put it all together and then stores them in a central database instead of a safe deposit box or in a drawer somewhere.
The American Hospital Association has a site called Put it in Writing it contains key resources and also includes a wallet ID card to alert health care workers that you have a Health Care Directive and lists family contacts in case of emergency. The site focuses on educating people and raising awareness around this important issue. http://www.putitinwriting.org/putitinwriting_app/index.jsp
Georgetown University-Kennedy Institute of Ethics-Library and Information Services sponsors a database. The National Reference Center for Bioethics Literature http://bioethics.georgetown.edu/nrc/resources/AdvanceDirectives.htm contains informational links and available resources for everyone for the layperson to the healthcare provider.
If there are complicated issues or the above web sites do not address all of your questions, there are attorneys who specialize in living wills and advance directives who can assist. Don’t leave this important task undone. In a time of grief, allow the family that you love to reminisce and to grieve and then begin to heal. Save them the stress of trying to figure out what you would want. Decide for yourself talk to your family and then file your papers. Unlike the IRS, the penalty will go to your family if you file late.

You may wish to add our national non-profit organization to your list of advance directive resources. “Five Wishes” is the closest thing there is in America to a national advance directive. Five Wishes meets the legal requirements of 42 states; there are currently 14 million copies in national circulation, available in 26 languages. What distinguishes Five Wishes from all other advance directives is that it’s easy to understand and use and does not contain the medical and legal jargon found in all others. Perhaps best, Five Wishes helps structure the conversation around comfort, dignity and personal relationships vs. feeding tubes and ventilators. Good luck with your great blog! — Paul Malley, President, Aging with Dignity