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Posted on April 17, 2014 at 5:26 PM

by Craig Klugman, Ph.D.

This week is host is National Healthcare Decisions Day. The goal of this April 16th event is to “inspire, educate, and empower the public and providers about the importance of advance care planning.” Events are being held nation-wide to encourage people to complete advance directive forms as well as to have conversations with their friends and family about end-of-life health care wishes.

The latest study shows that 26% of people in general have completed advance directives. For those over age 65, the completion rate is 51%. Completion rates are higher among whites than other racial/ethnic groups, higher in those with more education than those with less, higher for those with higher incomes, and higher among widows than any other marital status group.

There has been a push over the last 40 years to create newer and better documents and to increase their completion. I helped create two online websites to do just this. The idea has been that completion will lead to lower costs in medical care, easier decision-making for family members, and an increased likelihood that one’s wishes will be followed. The March 2014 issue of Anesthesiology News reported on a study presented at the Society of Critical Care Medicine meeting. Kelli Jackson, a nurse in Santa Barbara learned that patient’s end of life wishes are often ignored. Jackson’s study looked at a teaching hospital in California where known end-of-life wishes were not followed in 60% of cases (n=35). Many studies show no change on patient outcome, no change on patient wishes being followed, and no change on reducing costs. Other studies show that there are changes in these areas.

Jackson cited several barriers to having wishes followed including people who knew the plans were unavailable when decisions had to be made, lack of time to discuss before action was required, and lack of accessibility of documents outlining patient’s desires.

In the last few years, more emphasis has been placed on having conversations over completing documents. The idea here is that if you can increase opportunities for people in a community to speak to one another about these issues that will lead to lower costs, easier family decision-making, and an increased likelihood that one’s wishes will be followed. The most commonly cited system is Gunderson Health Systems “Respecting Choices” program which encourages patient conversations with trained professionals. This program claims that in their home city of La Crosse, WI, 97% of adults have advance care plans.

La Crosse is a city of 52,000 people with a median age of 29.2 years. 92.48% of people speak English at home. The percent of residents living in poverty is 23.1%. The population is 89.4% white, 4.2% Asian, 2.3% Black, and 1.9% Hispanic. 91.7% have a high school degree and 26.5% have a bachelor’s degree. 51.2% have ever been married and 4.1% of residents are born outside of the United States. There are two hospitals.

Let’s contrast this with my home of Chicago. The city of Chicago has a population of 2.7 million (the Chicago metropolitan area has a population of over 10 million) with a median age of 32.9. 66.71% of people speak English at home. The percent of residents living in poverty is 23.7%. The population is 31.9% white, 5.2% Asian, 31.9% Black, and 29.2% Hispanic. 80.7% have a high school degree and 33.5% have a bachelor’s degree. 51.9% have ever been married and 21.4% of residents are born outside of the United States. There are approximately 119 hospitals (42 in the city proper).

These two Midwestern cities have some key differences mainly in size, ethnic/racial composition, foreign-born residents, language spoken at home, number of hospitals and completion of high school. Many people in Chicago have been asking whether the model of La Crosse—being based in a fairly homogenous population—could be transported to a very large, very diverse city. It’s easier to keep track and have files of patient advance care wishes when there are one or two hospitals versus 119 organized in different systems. Certainly many people are trying to transplant this program. Other methods that focus on conversations are also being created.

This week also happens to be the celebrations of two major religions—Easter and Passover. Both of these are focused on death and dying. Good Friday recognizes the day that Jesus was crucified. And while Passover is a festival about freedom from slavery, that freedom was only achieved, according to the story, by many plagues including slaying of children and drowning of Egyptians. My Passover Seder this year was attended by a group that included three physicians (2 of whom work in end-of-life care), two bioethicists (who work in end-of-life issues), a health journalist, two family members (who have been dealing with their mother’s senior needs), and a college student. We talked about all of the death that was mentioned in the Haggadah (a text that tells the story of Passover and the Seder) which led to conversation about death with dignity, having your decisions honored, and advance care planning. Two of the attendees have run over 50 discussion groups in senior centers and even hosted Death Dinners and Wine & Death events throughout the city.

The goal is not only to encourage people to think about and discuss their own death and dying, but also to change a culture that still eschews talking about dying even 45 years after Elisabeth Kübler-Ross published, On Death & Dying. As I say to my students, “The documents are important, but the conversation is critical.”

This message hit home quite personally in the last couple of weeks. A friend was involved with a motor vehicle accident that resulted in her body being maintained on a ventilator. She did not have an advance directive, but being my friend, she had gotten pulled into conversations about death, dying, and advance care planning on more than one occasion. And on more than one occasion she spoke to her husband about her wishes. I recall her telling me that he did not really want to talk about it, but she wanted to and so it was more of a one-way exchange. When time came to consider turning off the ventilator, her husband did not hesitate in the decision. He knew exactly what she wanted even if nothing had been written down. He waited a few days for her family to arrive from out of state to say goodbye. Her memorial service was held this week.

The truth is that as a society, we still do not know how to deal with dying or how to honor people’s wishes, or even whether we should honor their wishes. Over the last 6 months we have seen the high profile tragedies of Jahi McMath and Marlise Munoz. That these cases haunt us shows that no matter how many conversations we have, no matter how many documents we complete, the culture that does not engage dying needs to change. Health Care Decisions Day is one step toward that goal.

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