Physicians and Advance Care Planning: Emerging from the Pandemic with Greater Appreciation for End-of-Life Discussion

Adversity may be one of life’s most powerful teachers. It can make us more resilient and lead us to take stock of our values, priorities, and choices. The global pandemic has certainly catalyzed a great deal of change for many on a personal level. By forcing us to reckon with the unpredictability and fragility of life, it’s prompted us to think more purposefully about how we want to live our lives – including how we want to finish our life’s final chapter.

The importance of advance care planning cannot be overstated. An advance directive is a written statement of a person’s wishes regarding medical treatment. These allow patients to make their preferences known early and knowing a patient’s wishes for end-of-life care helps ensure that their care aligns with their goals and values while also relieving the burden on families to make critical medical decisions on behalf of their loved ones. Yet, as of 2021, a VITAS Healthcare-commissioned survey found that one in five people had a loved one who was seriously ill or died and did not know their wishes for end-of-life care. Earlier this year, VITAS commissioned another survey to better understand how people’s thoughts and behaviors around advance care planning may be evolving as we begin to emerge from, hopefully, the worst days of the pandemic. Disconcertingly, as restrictions ease and the death toll decline, survey results indicate Americans are still struggling to put a plan into place by documenting their wishes.

Post-Pandemic Shifts in End-of-Lifecare Planning On the positive side, the latest survey showed an uptick in those who reported documenting their end-of-life wishes this year (35.4%) compared to last year(32%). Interest in advance care planning has particularly increased among Black Americans, who have been disproportionately affected by COVID-19. This year, nearly 40% of Black Americans said they were likely to discuss or document their wishes, compared to just 28% who said so in 2021.

Black respondents were also far more likely to know someone who has died without having made advance care plans, compared to Hispanic, white, and Asian respondents.

Though the recent upward trend in advance care planning is encouraging, survey results also signal interest may be waning. Last year, 29% of Americans reported that the pandemic increased the likelihood that they would discuss documenting their wishes. This year, that percentage has already dropped to 22.5%. While younger Americans ages 18-25 were among the most open to end-of-life discussions a year ago, with nearly half (47%) reporting they were likely to have this important conversation, that number has fallen to 37.8%.

Even more concerning, there is a persistent gap between those who reported that they value advance care planning and those who have actually begun the process. While the majority of people (68%) agree that these preparations are important or very important, nearly the same proportion of respondents (64.6%) have not documented their wishes. Meanwhile, just over half (55.5%) have at least discussed their wishes with someone.

The Role of the Physician in Advance Care Planning Here’s another statistic to consider: a striking 71.4% of those surveyed say their healthcare providers have never initiated these important conversations with them. This is where we as physicians have the opportunity to course-correct and make a difference. After immediate family, the primary care provider was the most common response when asked with whom people would be comfortable discussing advance care planning. And, these A discussions often lead to concrete action. Of those who reported documenting their advance care directives,13.2% said their provider had discussed it with them. Those numbers are even higher among Hispanic (24%) and Asian (24.2%) respondents.

Many of us were drawn to medicine to save and improve lives. And it’s important to remember that this duty includes helping our patients live their best possible last years, months, and days. That’s why end-of-life discussions shouldn’t wait. We should be having these conversations with our patients early and regularly, while our patients are communicative and alert. Not only can regular advance care planning discussions help destigmatize the topic, but they can also ultimately help our patients feel less anxious about the future and more in control. Of course, these conversations also require resources, support, and practice.

At VITAS, we recommend starting with the SPIKES protocol (Explained below):

Additionally, to help physicians and other healthcare professionals feel empowered to effectively discuss advance care planning with their patients, VITAS launched a new preceptorship and certificate program at the National Black Nurses Association Annual Conference in July 2023. This program featured education modules on a variety of topics, including prognostication, hospice basics, and how to communicate with sensitivity, respect, and empathy. It also included practice scenarios where participants can get feedback on actual conversations with patients.

The pandemic has changed the way we view advanced care planning. Physicians can appreciate the importance of end-of-life discussions with new clarity, and ultimately allow more patients to live their final days in a way that honors their wishes and values. It has been a hard-learned lesson, but hopefully, it’s a lasting one.

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