This week is host to National Healthcare Decisions Day. The goal of the 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 the completion of advance directive forms as well as conversations with friends and family members about end of life health care wishes.
The latest study shows that 26% of people 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 those of any other marital status.
There has been a push in the last 40 years to create newer and better documents, and to increase completion. I helped create two online websites to do just this. 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 patients’ 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; they include lack of time to discuss before action was required and the lack of accessibility to documents outlining patient’s desires.
In the last few years, more emphasis has been placed on having conversations than completing documents. If opportunities are increased for people to speak to one another about these issues- the results could be 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; in its home city of La Crosse, Wisconsin, 97% of adults have advance care plans.
La Crosse is a city of 52,000 people with a median age of 29.2 years. Almost everyone speaks 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. Nine out of ten residents have a high school degree, and 26.5% have a bachelor’s degree. More than half have never been married, and 4.1% of residents were born outside of the United States. There are two hospitals.
Contrast this with my home of Chicago, with a population of 2.7 million and a median age of 32.9. Around 65% of people speak English at home. About a quarter of all residents live in poverty. The population is 31.9% white, 5.2% Asian, 31.9% Black, and 29.2% Hispanic. Eight in ten people have a high school degree, and a third have a bachelor’s degree. There are approximately 42 hospitals within city limits.
Many Chicagoans 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 only one or two hospitals.
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. While Passover is a festival about freedom from slavery, that freedom was only achieved 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 (two 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); a conversation ensued about death with dignity, having decisions honored, and advance care planning.
The goal is not only to encourage others to think about and discuss their own end of life, but also to change a culture that still eschews the subject 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 in 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 been pulled into conversations about death, dying, and advance care planning on more than one occasion. She also spoke to her husband about her wishes. I recall her telling me that he did not really want to talk about it, so it was more of a one-way exchange. However, when the time came to consider turning off the ventilator, her husband did not hesitate. 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 others’ wishes- or even whether we should honor them. In the last six 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.