Living Wills Can Be Deadly

Living Wills can be deadly if misinterpreted by medical personnel! Protect yourself!

Do you have a Living Will? Do you know what it says? If you have one, you probably think that you are saving your loved ones the burden of making a tough decision during tough times. That was certainly my intention when I signed mine. But have you considered that the Living Will could, in fact, be a danger to you and possibly cost you your life? This was not an issue I had ever considered, because I trusted the medical profession to understand the documents. I was very wrong to do that. I learned this week that the medical profession is very ignorant where Living Wills are concerned.

Some basic law is necessary to understand what a “Living Will” is designed to do. South Carolina has the “Death with Dignity Act”, which can be found in Title 44, Chapter 77, of the South Carolina Code of Laws.  This law allows a person, even while they are young and healthy, to draw up a document that tells doctors, at some abstract time in the future, that the person does not want to be kept alive by artificial means.   It is meant to apply to situations like bad car wrecks that leave a person brain dead and on a feeding tube; or to a stroke that renders a person in what is termed a permanent vegetative state. It means you don’t want a feeding tube to keep you alive. This is clearly stated in the state mandated form. A “DNR” or “Do Not Resusciate” Order is entirely different. And this distinction is where the danger lies.

As the name implies, the DNR designation communicates to medical personnel (whoever that might be, a nurse on duty or a paramedic or a doctor) not to even attempt to restart the patient’s heart or breathing once they have stopped. There are valid reasons to have a DNR. The DNR  is chosen by patients who are nearing death and have expressed that they do not wish to be kept alive by heroic means. You might see it with a terminal cancer patient, who might be revived, but only for a brief time and only to face a life of extreme pain. I once had a 98 year old blind, incontinent client who had DNR orders plastered all over his house. He was ready to go. I respect that.

You would NOT generally see a DNR designation on an otherwise healthy person. The problem is that people in the medical field do not seem to know the difference between living wills and DNRs! A living will is not the equivalent of a DNR order. Not by a long shot.

This point was driven home to me in a big way this week when my mother suffered a stroke. My mother is a strong woman and a lifelong advocate for personal responsibility and making one’s own decisions. She carefully and deliberately read over her living will and signed it in 1997. She made it clear that if the contingencies listed in the living will occurred, that she would not want to have a feeding tube and be kept alive in a persistent vegetative state. However, that being said, she never signed a DNR.

You can imagine my surprise when I found my mother, who despite having had what was described by the neurologist as a minor brain bleed, was conscious and able to feed herself and who had limited speech, to have a DNR bracelet on her arm and a DNR sticker on the door of her ICU cubicle at the hospital. After a brief discussion with the ICU nurse, who did not seem to know the difference in a living will and a DNR, I convinced her that a living will is not the same thing as a DNR. The bracelet was removed and the sticker was taken off the door. Being a lawyer, I kept the DNR bracelet.

As the horror of what would have happened if she had “coded” or needed resuscitation before I arrived sank in, I realized how dangerous that living will really is. It in no way means that my mother didn’t want to be treated for her condition any more than mine means I don’t want CPR if I have drowned. The fact that the ICU personnel were ignorant to this fact is astonishing. You would think that if any unit was going to know the difference in a living will and a DNR, it would be the ICU. But they were ignorant. Woefully ignorant. And I wonder how many people have died because of this ignorance.

I asked a few more questions. My father, who is 81 years old and who is very distraught, didn’t know what the purple band with the letters DNR on it meant. Nobody told him or my brother, who is a college professor, what the DNR meant or that they did not intend to try to revive my mother if she needed that. The seriousness of the DNR was not explained to anyone. Astonishing. Only when the lawyer arrived was the situation revealed and handled appropriately. What about the families that don’t have a daughter or son who is a lawyer?

One thing is crucial. Hospital staff and families need to understand when the living will actually comes into play. There is a difference between when a living will is effective and when a living will is enacted or comes into play. A patient’s living will becomes effective when the patient has completed the living will correctly. That part is usually done at the lawyer’s office. The living will is only enacted  or come into play when the certain specified triggers, that are clearly outlined in the document, have occurred. In my mother’s case, none of the triggers had occurred, and yet she had been designated as DNR.

The most common trigger terms used in living wills are terminal condition and persistent vegetative state. Get down to the definitions. A terminal condition is any health condition that does not respond to sound medical treatment and will result in the patient’s death, and a persistent vegetative state is a condition in which the patient is not aware of his/her surroundings and has lost the ability to think. Patients in a persistent vegetative state have lost their ability to speak or respond to commands and therefore cannot communicate their wishes for health-care treatment.  South Carolina requires that two physicians document that the patient has a terminal condition or is in a persistent vegetative state. It is important that doctors and families remember that stabilization is the first priority in an emergency situation, therefore providing enough time to assess the patient and diagnose the condition. You certainly don’t just slap a DNR bracelet on a patient because she has executed a living will.

As I write this column, my mother is being moved from the ICU to a regular room and her prognosis is very good. She was able to say “I love you too, darling,” when I left her room. People in persistent vegetative states cannot do that. Wouldn’t it have been a tremendous tragedy if her time on earth had been cut short because the hospital staff was ignorant?

So the take away message is that living wills are good things to consider and to have if you want one.  They can certainly spare your family an ordeal. But they are NOT the same thing as a DNR order. And based on my experience, you better make darn sure that your family and your doctors know the difference.   If you don’t, your living will could get you killed.



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