Advance directives and end-of-life care: The conversation no one wants to have

My husband and I recently attended a funeral that was devoid of anything personal or unique about the deceased's life: Who she was, how her life mattered and how those who loved her will miss her. It was a short graveside service. Then everyone went to a restaurant and chatted about their own lives. No one stood up and said anything truly meaningful about the person we were there to honor and how we felt about her death. 

I don't know if the service was what she wanted or whether she ever discussed with anyone how she wanted to live out her final days if she could no longer communicate her wishes.

During the ride home, I carefully brought up the service and asked my husband what he thought about it, suggesting that perhaps we should have the discussion that no one ever wants to have or think about: Funeral plans and, most importantly, end-of-life care and what we want for medical intervention or treatment if we can't speak for ourselves.

The discussion was brief and uncomfortable, but oh so important. And it has led to conversations with other family members about their funeral plans and where we could find the papers that documented their final wishes. It helped that these initial talks coincided with last week's National Healthcare Decisions Day, which encouraged providers to talk about advance care planning with their patients and families.

One day a year to raise awareness about the importance of these documents may not be enough, however. Recent research shows that fewer than half of terminally ill patients have advance directives--but among the people who do have them, between 65 and 76 percent of their doctors don't know about them.

To help bridge this gap, the University of Florida (UF) Health, a 900-bed academic center and one of the largest in the Southeast, developed a palliative care program aimed to increase the number of patients who complete advance directives. Two years ago, the hospital's rate was 6 percent, far below the national average for completion. Today it is up to 25 percent, according to Sheri Kittleson, M.D., pictured right, medical director for the UF Health Palliative Care program. In addition, a recent mortality review of patients who died in the intensive care unit at UF Health found that 40 percent had their wishes documented.

Kittleson's passion about the importance of advance directives began years ago when she was a practicing hospitalist and rushed into the ICU in response to a code that a patient was crashing. But as she ran to intubate the patient, a family member stopped her, asking whether this is what the patient wanted. It never occured to Kittlesen before then that she wouldn't do everything in her power to save the patient. In response, Kittleson reached out to her senior medical resident and got a life lesson.

The senior medical resident, Kittleson recalled during an exclusive interview with FierceHealthcare, went into the room and asked the family what they understood about the loved one's disease and prognosis and what outcome did they hope for. They listened as the family told them about her disease, her many hospitalizations, readmissions and painful treatments. They told them how the patient said that, if she was nearing the end of life, she didn't want every treatment necessary to extend it. "We listened," she recalled. Then the senior resident told the family that it appears the patient was getting closer to death. She told the family they would keep her comfortable, treat her pain and have a chaplain visit.

"We are scared to talk about that, but death is a natural process for all of us," Kittleson says. "And [the senior resident] normalized the conversation and took the scariness out of it.

Kittleson took that experience and modeled the senior medical resident's behavior in her own practice. She also took it with her when she served on a 20-member interdisicplinary advance directive committee at UF that began to create the program, tackle the electronic health record system's capabilities, revise the hospital policy and develop an education and training program for staff, employees, patients and the community.

The web-based program includes a video by Emmi Solutions, as well as a packet providing an overview on advance directives, forms and resources. The hospital uses technology so patients receive automatic messages as part of their annual physical reminders to bring in their advance directive for the appointment. The message states that, if they don't have one or know what it is, they can watch the video.

UF also intends to add five minutes to the clinician training module that explains what an advance directive looks like and where to find one in the health system. UF plans to conduct training during orientation and in refresher training courses every two years.

The biggest challenge, Kittleson says, is to help providers feel comfortable talking with patients about end of life planning. "As a culture we are fearful of death but as a medical culture, death and illness is seen as a failure of the system. We are trained to save a person's life and cure this person's disease. But death is a natural cycle of life for all of us," she says.

Documentation of a patient's end of life care wishes is also a gift to the family and clinicians, according to Kittleson. "If you put it off and wait it until it's too late, it can tear families apart," she says. "It makes the decisions very difficult, painful, stressful and adds to the complexity of care."

She also advises clinicians to remind patients that they can change the document at any time--and that whatever they wish, whether it's aggressive care or allowing a natural death when they begin the process of actively dying, medical staff will honor and advocate for it.

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