When is the Best Time to Talk About End of Life Issues?

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.

Health Care Informatics

When I enrolled as a Health Care Informatics student, I was terrified at what I had gotten myself into. I had visions of math and statistics. Since I didn’t know what health care informatics was all about; it was scary. Math and statistics are scary to me since I have difficulty understanding them and since I didn’t understand what Health Care Informatics was: this course was scary too and must surely be filled with lots of math and statistics. That is the connection that my brain makes with the unknown.
I was pleasantly surprised to learn during this first week of class that Health Care Informatics is simply the storage and organization of health information and the sharing of that information. I became downright excited when I found out that I was going to get to Twitter and blog and call it homework! In only one short week I have become quite enthralled with Twitter and I am tweeting with the big boys!

There is so much more to Health Care Informatics than my simplistic description above.  The most important example is the Electronic Health Record. The EHR is a wonderful tool since it compiles all of a patient’s health information in one system that can be viewed by the patient’s health care providers. Some positives are that the health care team has instant access to all of the patient’s medical history, tests, treatments, surgeries, medications and this allows the health care team to provide faster, more accurate and efficient care for the patient. The question is: Who owns and who should have access to this information? The information is about the patient and is personal so my first thought is that it should belong to the patient. But, the hospital pays for the program so does the hospital own the information?

HIPPA dictates that the information contained in the EHR belongs to the patient and the patient has the right to access the information and to determine who sees the information. The physician is being paid to use the information and the hospital may own the software and hardware but not the actual information contained within the system. The insurance company could potentially use the information to try to dictate care that the physician provides in an attempt to cut costs or they could even deny coverage based on past medical history. So, the obvious solution would cause some to simply say, “Don’t allow the insurance companies access to the records”. However, this is not a realistic statement since we all know that the insurance companies will simply refuse to pay the patient claims unless the patient signs a form giving them access to the EHR. Should there be government regulations? I say the more governmental interference that you have the worse the situation will become.

There seems to be no question in my mind that the patient is the owner and controller of their personal health record.  The involvement of the government and the insurance companies scares me almost as much as math and statistics.

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