By Jennifer Dimond, LCSW 

It’s estimated that only about one-third of American adults have completed a living will, healthcare power of attorney, or both. The numbers are similar whether an individual has a chronic illness or is healthy (Yadav et al, 2017).  The reasons these numbers are low are not hard to imagine—discomfort with thinking about end of life; not having time to discuss with a provider during a medical visit; or simply believing “I’ll do it later,” to name a few.  

Patients are 10 times more likely to complete an advance directive if they are asked about it by a medical professional, family member, or friend (Van Scoy et al, 2014). Indeed, patients in most healthcare systems are asked at many touch points about their advance directive status—but sometimes, it’s not enough simply to prompt the patient to check a box, hand them a form to fill out, and feel the work is done.  

As social workers, our role often involves educating patients on the importance of advance directives, explaining terminology that can be confusing—what’s the difference between a living will, a healthcare proxy, a healthcare POA, and a Do Not Resuscitate order?—and offering help to complete the forms. Social workers really have an opportunity to shine, however, in taking the conversation deeper—especially when a patient is resistant—to learn what is important to that individual, and more importantly, to understand the perceptions, concerns and fears that are holding them back from completing this important document. 

Sometimes, these conversations are hard. I am often met with resistance or even fear when I ask a patient about their advance directive status. Some will tell me, “I don’t want to talk about that,” or, “My family knows what I would want.” Others will admit, either directly or through their body language, they are afraid that merely talking about end-of-life choices will hasten their decline. They are not ready to think about dying when they are fighting so hard to beat their cancer. 

Even for the most seasoned social worker, it can be hard to pursue the topic at this point and the temptation to move on is strong. We want to respect patients’ self-determination, and we do not want to cause them undue pain. But I believe this is where real connection happens. We are uniquely positioned to reframe these conversations with our patients to learn what matters to them. How do they define quality of life? What do they want their loved ones to understand? Who do they trust to speak for them when they can no longer speak for themselves?  

Coming from a hospice background, I have seen too many examples of what can happen when a person has not completed an advance directive and is no longer able to do so due to their physical and cognitive decline. When a patient expresses concern about becoming a burden to their family as their cancer progresses, I find that sharing these experiences helps them think differently. Framing the completion of an advance directives as a gift that ease the burden by not putting their loved ones in the agonizing position of having to make end of life decisions and wondering if they made the right choices usually makes my patients feel more comfortable. 

Helping a patient articulate and document their wishes can help them reclaim some sense of control at a time when control can seem to be in short supply. Just today, I had a patient state that while he is not scared to die, he is fearful of suffering at end of life. He expressed relief at knowing his advance directive will give his healthcare agent and his medical team the information they need to help alleviate his pain and distress.  

Sometimes, I find am the first person who has provided the patient an opportunity to talk about death and dying. I’ve heard more than once, “I need to talk about dying but my family is afraid to.” These moments are priceless, as not only do they provide space for a patient to openly talk about end of life, but they often leave with the confidence and tools to engage their families in hard but important conversations—and hopefully inspire them to complete their advance directives, too. 

References: 

Yadav KN, Gabler NB, Cooney E, Kent S, Kim J, Herbst N, Mante A, Halpern SD, Courtright KR. Approximately One In Three US Adults Completes Any Type Of Advance Directive For End-Of-Life Care. Health Aff (Millwood). 2017 Jul 1;36(7):1244-1251. doi: 10.1377/hlthaff.2017.0175. PMID: 28679811. 

Van Scoy LJ, Howrylak J, Nguyen A, Chen M, Sherman M. Family structure, experiences with end-of-life decision making, and who asked about advance directives impacts advance directive completion rates. J Palliat Med. 2014 Oct;17(10):1099-106. doi: 10.1089/jpm.2014.0033. Epub 2014 Jul 7. PMID: 25000276.