My wonderful father passed away on May 14 at 86. He lived far longer -- over 20 years longer -- than the actuaries predicted for an average American male born in 1921. He also lived half a day longer than he planned and wished to.
Even with genes marked with heart disease, which killed his father at 70 and his brother at 59, Dad took care of himself through diet and work. By the time his health began to fail at nearly age 84 in 2005, he had successfully undergone quintuple bypass surgery and pacemaker implantation and had lived for nearly 40 years with diabetes without having to take insulin. However, by the time Dad died, he was taking medications for congestive heart failure, high blood pressure, diabetes, glaucoma and asthma.
Over the last two years, our family muddled through countless middle-of-the-night emergency department admissions, long inpatient stays, several multiweek rounds of inpatient rehabilitation and numerous outpatient physical therapy sessions to try to get Dad stronger. He fought hard until the end.
It's the end that I want to focus on -- specifically, the last 12 hours.
Over the last two years Dad had been in and out of the hospital, he insisted on having an advance medical directive filed in his medical record. This stipulated that no heroic measures would be undertaken to keep him alive. He was very clear about this. Having seen his wife (my mother) through the end-stage of leukemia in the late 1970s, he well understood what an advance directive was and how it would be applied to his case.
Dad's hospital is on the list of U.S. News and World Report's Best Hospitals of 2006, and the specialty for which Dad was treated is in the top 15. I believe that's where the hospital belongs. It's the kind of hospital I'd like to be in as a patient if I had my father's condition.
But even in the best of inpatient settings in the U.S., mistakes can be made.
Late on a Sunday night, Dad went into respiratory failure. The doctor on call could not locate the advance directive. After a few moments of searching for it, and not finding it, the doctor proceeded to intubate Dad and put him on a ventilator.
This procedure went against what Dad had wanted, but because the paperwork -- the paperwork -- for the advance directive could not be located in short order, his wishes were not fulfilled.
By sunrise, his personal physician went to the hospital and fulfilled the wishes expressed on his paper-based advanced directives. But the intervening hours were filled with anguish for those of us who well understood what Dad had wanted to happen at midnight.
Think of how this event could have been avoided: through a notation in an electronic health record. Or, perhaps via a special symbol or bar code on his wrist bracelet indicating "DNR."
I've subsequently learned that there is a new radio frequency identification system offered by the VeriChip Corporation, partnering with the U.S. Living Will Registry, to provide the first completely digital link to a national Advance Directive document archive. This isn't foolproof, as the hospital would have to have the VeriMed RFID Reader to view these documents. But it's good to know that a digital solution for storing and viewing advance directives is on the market.
Further, just last week the United Health Foundation, Aging with Dignity, the U.S. Administration on Aging, the American Hospital Association and a score of aging advocates announced the 500,000 Wishes Campaign. The group will promote "Five Wishes," an advance directive that aims to help people address end-of-life care decisions such as, "Who will make decisions for you when you can't make them yourself?" and "How comfortable would you like to be?" The campaign is available in at least 20 languages to help ameliorate health literacy challenges.
Back in 2005, I wrote a column for iHealthBeat called, "Really Personal Health Records." I cannot imagine a more personal reason for an individual American citizen to adopt a PHR than to communicate an advance medical directive. But that is not the end of the story because each of the 50 states has laws dealing with advance directives. In many of them, physicians must sign off before they are considered complete.
"We are at a point where we have run out of adrenaline," Scott Wallace, president and CEO the National Alliance for Health IT, recently said in Government Health IT. "People are exhausted," he said, alluding to the stalled progress on EHR adoption.
After 20 years of working on health IT projects and writing about them, I'm not willing to give up the good fight to encourage EHR adoption. We in the U.S. are behind the rest of the medically advanced world both in terms of EHR adoption and in managing end-of-life care. Sure, we're tired, as Wallace of NAHIT points out; but it's a matter of life -- quality of life -- and death. So let's get on with the process of adopting EHRs. If not for you, do it for your kids ... or for your parents.
About the author:
Jane Sarasohn-Kahn is a health economist who advises organizations at the nexus of health care and technology. She leads Think-Health, a health consultancy, and works with stakeholders throughout the health care industry.
The views expressed in this column are those of the author and do not represent the views of the California HealthCare Foundation or the Advisory Board Company.