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 The Final Say 
 
The following is one in an ongoing series of columns entitled Patient Advocacy in Hospitals by . View all columns in series
In my business practice, I often find myself coaching individuals who insist on having "the final say." They are committed to the appearance and/or actuality of being in charge and often run their own company. Few, if any, apply this commitment to their personal life as it relates to end-of-life planning, even though this would preserve their right to have "the [FINAL] final say!"

Each year, we honor April 16th as National Healthcare Decisions Day. Healthcare decision documents are known by:

  • Durable Medical Power of Attorney - states that a designated person has the legal right to make healthcare decisions for me, should I become incapacitated;
  • Living Will - specifies that extraordinary efforts not be used to prolong my life should I become terminally ill or unable to regain a meaningful quality of life;
  • Power of Attorney - specifies the legal right to make non medical-related decisions for an incapacitated person, are necessary;
  • Advanced Directives - a combination of the above documents;
  • HIPPA Release Form - states that I understand the materials or data I am requesting will be released without protection by Federal Privacy Protection Regulations and includes a "hold harmless" statement.
I always send an email to my colleagues and friends on this day asking the following questions:
  • Do you have an executed Durable Medical Power of Attorney?
  • How many copies do you have and where are they stored?
  • Who else has a copy?
  • Are you confident your appointed healthcare agent will act as you wish rather than as they wish?
  • Have you discussed your end-of-life wishes with this individual?
  • Do you have a Living Will?
  • Have you specifically addressed the issue of pain management as we must assume the pain stimulus is still present? (reference Oxford Textbook of Palliative Medicine, 2nd ed. 1999, pages 982-989)
  • How many copies do you have and where are they stored?
  • Who else has a copy?
  • Does your primary care physician have a copy in your file?
  • Does your primary care physician know how to reach your appointed healthcare agent?
  • Have you discussed your end-of-life wishes with your primary care physician?
  • Have you discussed end-of-life wishes with your family and loved ones?
  • Do you have an executed HIPPA Release Form?
  • How many copies do you have and where are they stored?
  • If you are a DNR ("Do Not Resuscitate"), is your form in order, executed by your doctor and posted in a prominent place in your home? (the refrigerator door is commonly used)
These are not pleasant or easy issues to confront and there are no "right" answers, just "your" answers.

No one wants to believe anything bad could happen to them, the very issue that confronted the spouse and parents of Terri Schiavo, who at age 27, suffered a cardiac arrest, that lead to brain damage due to lack of oxygen. Her case went to the Supreme Court because she lacked these documents. Regardless of what course of action you believe should have occurred, the fact remains that this painful experience could have been totally avoided by her family and the county had she executed these two documents. Most importantly, all would have known that what was done was what she wanted.

Why do I feel so passionate about this subject? Although my husband survived catastrophic medical events during a 7+ month hospital stay, I entered his medical nightmare as "just a spouse," not as a person who had Durable Medical Power of Attorney. Talk about a case of the cobbler's children not having shoes! I was married to an attorney, who refused to deal with legal issues such as a Durable Medical Power of Attorney and a Living Will because "it was too upsetting to think about them."

It has been my experience that you run into two types of healthcare providers-

  • those who appreciate your knowledge and wish to partner with you and
  • those who do not.
The real need for these documents occurs when you deal with the latter as I did in each of the four hospitals in which my husband was treated. Keep in mind that HIPAA privacy laws make it extremely difficult, if not impossible, for you to access patient information as an advocate without a Durable Medical Power of Attorney. When someone we care about is hospitalized, we are under enough stress without having to take on this additional burden.

DO THIS NOW! Don't put it off! If you need copies of these documents, here are three sources:
1. go to http://www.uslivingwillregistry.com/forms.shtm;
2. go to a local hospital and ask the Legal or Patient Advocacy office for state-compliant forms;
3. visit http://www.caringinfo.org/stateaddownload and download free state-specific advanced directives.

A quote by Roy Walsh, psychiatry professor interviewed in The Search For Meaning by Phillip L. Berman, may explain how we continue to feed our denial. "You can see that basically our lives are, to a large extent, spent in avoiding confrontation with ourselves. And then you can begin to make sense of the enormous amount of our culture's daily activities, which attempt to distract us from ourselves, from deep reflection, from deep thinking, from existential confrontation. There's a wonderful phrase by the philosopher Kierkegaard, 'tranquilization by the trivial.' And I think our culture has mastered this better than any culture in history, simply because we have the wealth and means to do so."

Regardless of our cultural conditioning, I believe avoidance of this subject is also a direct result of fear:

  • fear of the unknown;
  • fear of talking about death;
  • fear of the act of death;
  • fear of reactions to our conversations
and on and on. Christian Nestell Bovee states, "We fear things in proportion to our ignorance of them." If true, then merely having these conversations and making these decisions should calm some of our fear. Not only are you doing yourself a service, you are sparing your family the agony of one of life's greatest and most difficult decisions.

You are also ensuring that you have "the [FINAL] final say!"


JARI HOLLAND BUCK is a business consultant, medical layperson, Reiki Master and Shamanic Practitioner who spent 7-1/2 months in four hospitals with her critically ill husband. During 6+ months on life support, every organ in his body failed, yet he survived. Learn more about how to be an advocate in her book, Hospital Stay Handbook: A Guide to Becoming A Patient Advocate for Your Loved Ones, winner of the 2006 Parent to Parent Adding Wisdom Award and finalist in the Fresh Voices of 2006 Health category.

      
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 About The Author
Jari Holland Buck is a business consultant, medical layperson, Reiki Master and Shamanic Practitioner who spent 6-1/2 months in four hospitals with her critically ill husband. During 5+ months on life support, every......moreJari Buck
 
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