Friday, June 21, 2013

More on Advance Directives

Earlier this month I blogged about advance directives and how they came to be accepted here in the U.S. In response to that blog, Sarah Glenn shared a story about her father. 

She wrote: "My father made sure we all knew his wishes once he knew he wasn't going to live much longer. It spared us from several hard decisions. Not everyone has this 'luxury' of time, though."

Sarah is right when she says we don't all have the luxury of time on our side. Sometimes events catch us unaware of the long-term implications. 

To prove that point, let me tell you about my nephew. Neil was a healthy 42-year-old bachelor who loved sports and the great outdoors. Last November, after spending three days in bed with flu-like symptoms, he suddenly collapsed on his bedroom floor. When the paramedics arrived, they found him in cardiac arrest. He was resuscitated, but never regained consciousness. After two days on life support in the ICU, he died. The diagnosis: septic shock due to a massive infection. 

Neil never filled out advance directives, nor did he assign anyone as his Power of Attorney for Health Care, even though he was a surgical tech at a large hospital and knew the value of such forms . When he became ill, his mom figured that, as next of kin, she'd have some say in his hospital care. But because of the HIPAA privacy act and the lack of advance directives, she was told she had no legal right to consult with his doctors, nor could she request an autopsy after Neil died. To this day, my sister-in-law wonders what caused the infection that killed her son. 

Neil's death taught the entire family a hard lesson: you're never too young or too healthy to consider filling our advance directives. 

So what are the various types of advance directives? 
The first is called a Durable Power of Attorney for Health Care. A DPAHC is a legal document recognized by all fifty states. It names a person who will make health care decisions for you if you become mentally incapacitated due to illness and are unable to express your wishes in any manner whatsoever. A DPAHC should be made before you become ill, at a time when you can discuss your wishes with the person you name as your agent. If a life-threatening event occurs, do you want to be placed on a ventilator? Do want a feeding tube inserted? Do you want to be kept alive artificially? These decisions are yours to make and your agent's to carry out in your name. 

A Living Will lists information provided by you concerning your decisions regarding medical treatment. It provides that information to your family, your DPAHC agent, your doctor, and any other healthcare providers you come in contact with in a hospital or nursing home setting. 

A Living Will is a formal document, but unlike a DPAHC, it is not legally binding in all states. If you have both a DPAHC and a Living Will, you can be pretty sure your wishes will be followed. If you only have a Living Will, your wishes can be dismissed by family members who feel differently than you do about certain medical procedures. Examples of this occur all the time, especially when it comes to feeding tube placement and use of ventilators to artificially prolong life. Doctors can also ignore Living Wills and order medical and/or surgical interventions that you would refuse if you were able to make your own decisions.

If your state is like mine (Illinois), you can download a DPAHC from your state website. The wording of the document can change slightly from state to state, so it is best if you check locally before downloading a generic version of a DPAHC. Donor registration forms can also be downloaded from your state website.

A third form you will want to consider is a simple DNR, or Do Not Resuscitate, advance directive. On this form you can chose if you want to have CPR performed if you suffer a full cardiopulmonary arrest, meaning both your heart and your breathing stops. CPR in this case includes chest compressions and endotracheal intubation (insertion of a breathing tube) with patient placement on a mechanical ventilator.

A newer and better kind of DNR form is known as a POLST -- Physician Orders for Life-Sustaining Treatment. Using this form you can chose to accept or refuse CPR; accept or refuse artificial nutrition through tubes mechanically placed down the nose or surgically placed into the stomach; ask for comfort measures only, including oxygen and pain medication; accept or refuse IVs, antibiotics, and breathing machines other than ventilators (BiPAP and CPAP); accept or refuse intubation and placement on a ventilator.

Both the simple DNR form and the POLST form need to be signed by a doctor after consultation with the patient. This can be done during a normal office visit or in a hospital setting.

Despite advances in CPR, a 2010 study reported in Cardiology Today found that people who suffer a cardiac arrest have an arrest-to-hospital-admission survival rate of only 23.8%, and an arrest-to-hospital-discharge survival rate of only 7.6%. The study covered 142,740 patients who suffered cardiac arrest between 1950 and 2008. 

Currently, only 8% of patients who suffer cardiac arrest survive to hospital discharge; the other 92% spend their remaining days in hospital ICUs. Of those who survive, most suffer neurological damage; only 3% to 7% return to their previous level of functioning.

Broken down into understandable numbers, this means that for every 1000 people experiencing cardiac arrest, only 80 survive to hospital discharge. At best, only 5 of those 80 people return to their previous level of neurological function. 

That's something to think about before you tell your doctor, "If my heart stops, I want everything possible done to prolong my life." 
It's especially true if you're a senior citizen. People over 65 have a lower rate of survival after cardiac arrest than those younger than 65. 

Despite all the statistics, a recent poll of baby boomers -- the 76 million folks born between 1946 and 1964 -- showed that 62% of the respondents believed they were too healthy to bother with filling out advance directives. 

To my way of thinking, that's akin to sticking your head in the sand. 

What do you think?


  1. Thanks for these two posts, Mary. I think you're right in that this information is more important personally than for writing, but it's good to know for mystery purposes, too. Very useful stuff!

  2. Excellent information, Mary, and I hope people are paying attention. We went through an awful situation because these forms weren't in place, and it ended up being a two-year ordeal.
    Marja McGraw

  3. Thanks for the informative blog, Mary. Most people don't think they'll ever be put into this type of situation.

  4. Thanks for commenting, Kaye, Marja, and Evelyn. Kaye, you're right about the info being more important personally than for writing, but mystery writers are always looking for ways to twist a plot, and using this onfo could be one way to do that. Marja, I'm so sorry you had to go through such an ordeal. I know from personal experience how hard it can be when either the forms aren't in place or, as in the case of my father-in-law, they're ignored by the doctors. Very sad things can happen. Evelyn, I think most people just don't want to consider the worst scenario, or they wait for their doctor to introduce the subject. Unfortunately, most doctors don't discuss advance directives until a crisis occurs. Then people are too emotionally involved to calmly consider their choices.

  5. I should add my experience with the DNR for my mother. After we filled out the first one, I noticed it wasn't posted anywhere. They'd lost it. I filled out another one. Same results. The third one was never posted in her room either. I should have kept after them, though, because when she was found unresponsive at 5 am they called the paramedics who used paddles on her. I was, of course, livid. It they had revived her I would have sued. Be SURE that DNR is posted!

  6. This comment has been removed by the author.