Covid Reminds Us to Provide Advance Care Planning to All

To state that the COVID-19 pandemic has disrupted healthcare, is perhaps the biggest understatement of 2021. One overlooked positive outcome from this pandemic, is a renewed realization of how important advance care planning (ACP) is for everyone, not just the terminally ill. Prior to COVID-19, when healthcare providers were faced with an unexpected pending, death and no official end of life instructions, loved ones and family meet for intimate, small room discussions on the likely wishes of the patient. “Do you think your loved one would want to be intubated?” In this pandemic, many unexpectedly, young patients face crucial healthcare decisions and do not have an advance directive. The consultations with family now occur by phone, a method that is far from ideal for such an emotionally difficult discussion. With restrictions to visitors and efforts to reduce transmission, many nurses and physicians emotionally watch patients die quickly and had to make assumptions about end of life wishes or ask the patient in the middle of crisis, some very hard questions that should require significant thought. COVID-19 is the Terry Schiavo of this decade.

Despite Medicare mandates and incentives to discuss ACP, the average percentage of people who have an advance directive remains around 35% of American adults. ACP was needed by many COVID patients who likely never considered themselves old enough or sick enough to discuss death with a provider. COVID does not kill just the elderly and infirmed. The ability for patients to die with dignity with the care they desire is one of the sentinel goals of our healthcare system. So how do we change the paradigm to include ACP for everyone?

In my recent quality improvement project, a primary care practice began offering both an opportunity to discuss ACP and an alternative option for ACP, called Five Wishes. Five Wishes is a unique advance directive created by the Center for Aging with Dignity and intended to not only define the patient’s “wishes” for usual end of life questions, such as pain control, feeding tubes and intubation but also provide a spiritual and emotional “wish”. This added wish allows patients to share some final words with their loved ones. How many COVID patients who have died would have loved to have documented something meaningful as a final statement to their loved ones? Five Wishes is legally recognized in most states as an advance directive but honored in all states when attached to a legally recognized advance directive.

The project started by asking all scheduled adult patients, at every visit, three kiosk questions about their interest, knowledge and the existence of an advance directive. Several things were accomplished with this project. First, all adults were asked if they wanted to discuss ACP, without any biases to health status or age. The inclusivity of normalizing this topic to all removed the common hurdle of knowing when to introduce this topic. When we wait until people are with a terminal illness to start the topic of death, we can often destroy hope. Even if that hope is marginal, broaching this topic is difficult and is the biggest obstacle for providers to start an ACP discussion. Posing the opportunity to discuss end of life care with everyone, at every office visit, removes the stigma associated with talking about death. It also made for a convenient “ice breaker”. Are any of us immune from death? Is death predictable? No, thus we must stop assuming healthy adults do not need this information. Healthcare must create opportunities to educate patients before they are admitted to the hospital because accidents and global pandemics happen.

The results of the quality improvement project showed statistically significant evidence that patients were 3 times more likely to discuss ACP just by simply being asked. Unsurprisingly, most young adults did not want to discuss ACP and many older adults already had an ACP, but the real value was with the patients who wanted to know, “What is an advance directive”? A simple process of using a primary care setting to normalize the conversation about end of life care can support what we all value, dying with dignity. What better place to provide this information than where providers have established relationships with their patients? To have a stranger ask you as you are being admitted to a hospital, if you want to be intubated or have information about an advance directive is too impersonal and, in my experience, never successful. COVID-19 has shown us that life is fragile and unpredictable. Discussing ACP does not have to be doom and gloom. It’s a fact of life that we will all die, and most of us have no idea when or how. Let us remove the stigma of discussing end of life care by offering nonthreatening opportunities to start this important discussion with all patients, when they are well.

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Author declares no conflict interest.