Education was a common theme throughout my interviews, both the education of the general public and of healthcare providers. Most people do not understand what advance
directives are and what they are not. One of my key informants said, “There is a lot of education
needed on this subject. Many people believe that if you have an advance directive, it means you want comfort care only and that you are a DNR. A lot of education is needed.” Physicians and healthcare providers also need education in the area of end-of-life planning and advance directives. Healthcare professionals need to not only understand what end-of-life planning and advance directives are, they need training on how to approach end-of-life planning conversations with patients and their families and how to frame discussion topics. An informant told me that as he educates patients and families he talks about the need for an advance directive “in the future.”
He said he believes mentioning the need for an advance directive in the future makes the discussion easier. When talking with patients he says, “This is something you should probably
get into place now so that when it really becomes important at some point down the road, it will already be in place.”
One of my key informants is working on educating physicians about end-of-life planning and end-of-life discussions with patients and families. The informant told me,
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“I am working on developing a way to standardize advance care planning in the outpatient world. I’m working on how it can be better incorporated into the training of primary care physicians and how it can be included in the standard workflow. Part of what I’m looking at is how to train physicians to have goals regarding their advance care planning discussions.”
The informant went on to explain that physicians or the person leading an advance care planning discussion should have a goal for that discussion. The goal could be simply to be sure the other person(s) understands what advance directives are, or the goal could be to get the person to choose which type of advance directive is most appealing, or the goal could be to get an advance directive completed.
Another informant told me, “Some patients and families need to understand that it isn’t
necessary to spend your last days in agony or with labored breathing.” Education about end-of- life care and palliative care is just as important as education about advance directives. One of my subject matter experts said, “Education is key, for most people it is a lack of understanding.
Usually once advance care planning has been explained, they respond, ‘that makes sense,’ and 8 out of 10 will do it.” Another key informant said,
“Most of the people we provide services for don’t know what advance directives are. We introduce them to advance care planning. We are looking at the possibility of setting up small group sessions to look at specific pieces aspects of the caregiving journey,
including advance directives.”
Small group sessions for education is an interesting idea and may work well in certain settings. Members of the group may benefit from hearing the questions and topics raised by other members of the group.
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When asked, how do you address the barriers to completing an advance directive, one of my key informants responded, “Basically, knowledge is power, and trying to explain the severity
of the illness and try and explain the quality of life and trying to bridge that gap and help people understand the quality versus quantity piece.”
During a few of my interviews the concept of a two-step approach arose. The two-step approach is approaching the goal of getting an advance directive completed as a two part process: 1) an educational discussion about end-of-life planning; and 2) on a separate date, meeting to complete an advance directive. A key informant confidently stated,
“I am very comfortable prioritizing advance directives. I am very comfortable in particular with spending an entire office visit focused on advance directives and not anything else. I have found the most [effective] way to overcome the barriers is to set expectations, whether it is a clinic visit or a visit in a hospital room, set expectations, usually in a two-visit sequence. ‘Today I’m going to show you an advance directive and we’re going to talk through what they are. If we agree that it’s something you want to do, we will set up an appointment where that’s what we do [and we won’t do anything else during that visit].”
That key informant believes that the two-step or two visit approach works very well and gives the patient and/or family time to digest and process what advance directives are and what end-of- life decisions they would like to make. Another informant stated,
“I try to have a sit down meeting with the patient and family and explain things to ensure they understand what advance directives are. And I let them know that they do not have to make any decisions right away, not at this moment, but I leave information with them
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and information that describes other people’s experiences so that they have some material to help them make decisions.”
One informant commented,
“There’s culture and education. To tell you the truth, I think that people should be having conversations about end of life decisions in high school. We teach kids how to balance a check book, we should be broaching this subject in high school, and touch on it again while they are in college and then again as a young adult. We talk about organ donation. We should be talking about this stuff. We plan for retirement, we plan for our kids to go to college but we’re not planning for the one thing that is guaranteed to happen – which is end of life.”