Preparing an End of Life Care Plan: Nurses Should Lead the Way

Most nurses understand the importance of discussing end of life care and preparing advance directives, but they are only human—and it is very human to avoid confronting the prospect of one’s own death. The pandemic should serve as a wake-up call, though, especially for nurses, who are even more vulnerable to the virus than other healthcare workers. With the number of lives lost to COVID-19 passing 200,000 in the US and 1 million worldwide, if you have not already discussed end of life care with your friends and family, it’s time to act.

Nurses know from first-hand experience that most patients who run the code blue gauntlet never sat down with their loved ones to discuss the decisions and consequences that come with end of life care. There is a natural reluctance on both sides. Most people shy away from thoughts about their own death, and it is painful even to imagine losing someone you love. It can be so distressing and awkward to discuss end of life care, that a spouse or parent who tries to broach the subject is often shut down without a hearing.

People tend to agree that they should make preparations for their end of life care, but there is a substantial gap between beliefs and deeds. In a 2017 Kaiser Family Foundation poll, 87% of the respondents—young adults as well as senior citizens—said they considered it “very important” to have a document of their wishes for end of life treatment. However, only 34% had actually documented their wishes for medical care if they became seriously ill, and just 18% had discussed end of life issues with their doctor. Ironically, 95% of the respondents to a 2018 survey by The Conversation Project said that they were willing or wanted to talk about their end-of-life wishes. It can be that difficult to take action on a matter one believes to be “very important.”

What can you do to help? If you make plans for your own end of life care, you will be in a better position to persuade patients to make and document their own arrangements. Perhaps you already make a point of discussing these issues with patients, but haven’t prepared your own plans? The pandemic is giving many nurses a new sense of urgency. A 27-year-old ICU nurse, Deborah Szeto, shared her experience on The Conversation Project blog, admitting, “as someone who frequently talks to her patients about having honest conversations with their loved ones about their end-of-life preferences, the COVID-19 pandemic was the final push I needed to truly practice what I preach.” She found herself “reading article after article about seemingly healthy young adults being hospitalized for COVID-19 symptoms. Some of the most chilling stories were about young ICU nurses. I imagined myself on high flow oxygen—or worse, intubated…” Instead of hiding from her fears or denying them, she proceeded to fill out an advance directive and emailed a copy to her healthcare provider.

Prepare for Your Care video on end of life care planning — Screenshot fom Prepare for Your Care video

There are resources that can help people approach and settle end of life planning issues. Organizations such as Prepare for Your Care, The Conversation Project, and Our Care Wishes offer step-by-step guides and workbooks to help people decide upon and formalize plans for end of life care.

You can read ICU nurse Deborah Szeto’s blog on COVID-19 and end of life planning here. Our Care Wishes offers a series of guides and helps users to create a free custom document recording their medical care decisions. To find an advance directive designed for your state, visit the Prepare Advance Directive page on the Prepare for Your Care site and select your state from the drop-down menu. For information on how to select or be a health care proxy, see this guide from The Conversation Project.