The Impact of COVID-19 on Completion of Advance Directives in Healthcare Workers in the United States

Advance directives (ADs) are written documents in which individuals outline their wishes for future medical treatments in the event that they become incapable of expressing their end-of-life care wishes.(1) Advance care planning (ACP) is a process in which individuals can discuss their personal values and preferences, select surrogate decision makers, and document their wishes in the form of ADs, such as the living will and durable power of attorney.(2) The goals of ACP and ADs are to ensure that patients receive care that is congruent with their values and preferences; reduce moral distress on patients, their loved ones, and healthcare workers; and increase patient satisfaction via shared decision-making.(3)

Despite the aforementioned benefits of ACP, most individuals do not have ADs in place. In a systematic review of studies published between 2011 and 2016, it was determined that only 36.7% of 795,909 participants had completed ADs, including 29.3% with living wills.(4) All of those included in the study were categorized as adults residing in the United States.

Many obstacles preclude discussions of end-of-life care and ACP between healthcare providers and patients.

Many factors may contribute to AD completion, including education, age, culture, race, religious or spiritual beliefs, fear of the topic, relationship status, and perceptions regarding cost or eligibility.(5) A recent systematic review revealed that racial minorities in the United States are less likely to have ADs compared with white individuals. In addition, most of those who have ADs are white, elderly, and critically ill.(5) To further complicate the issue, the onus of AD completion is not entirely on patients. Physicians play a major role in discussing end-of-life care and management, as well as ACP, with their patients; however, they may not have these discussions with every patient. In a survey of community outpatient primary care physicians, 97.5% reported being comfortable discussing ACP with their patients, but only 43% have actually discussed ADs, mainly with patients who have been identified as having chronic and progressive life-limiting illnesses.(6) The issue may not be limited to the United States. In a survey of 1000 family physicians practicing in Canada, only 19% reported having discussed ADs with more than 10 patients, despite 86% of these physicians supporting their usage.(7) Many obstacles preclude discussions of end-of-life care and ACP between healthcare providers and patients. Some of these barriers include an inaccurate prognosis, which can muddle the timeline for care management; the limited time healthcare providers spend with patients; or lack of training or exposure, leading to discomfort surrounding discussions of end-of-life issues.(8–11)

Commonly reported barriers to advance directive completion included fear of the subject, procrastination, and costs.

Despite their training and experience, healthcare workers often lack their own ADs. In a survey of hospice healthcare workers, only 44% of 890 respondents reported having completed an AD. Commonly reported barriers to AD completion among these individuals included fear of the subject, procrastination, and costs.(12) An investigation of 170 healthcare professionals, including physicians, nurses, social workers, and other support staff, revealed that while 83% reported having discussed their end-of-life care wishes with individuals close to them, only 35% actually had a written AD.(9)

COVID-19 has posed significant challenges to healthcare systems across the world. With over 700,000 deaths in the United States attributed to COVID-19, the need for ACP has become increasingly apparent.(13) In the context of COVID-19, a pandemic that has highlighted resource scarcity and crisis capacity, ACP is essential to provide goal-concordant care for several reasons: to avoid life-sustaining treatment when it is not wanted; to avoid nonbeneficial high-intensity care, especially when resources are limited; and to avoid transmission of contagious disease when treatment was not desired.(14) A retrospective analysis conducted between January 1, 2020 and June 30, 2020 determined that more ADs were distributed by an end-of-life care center within the first six months of 2020 than during the same months in the past five years.(15) Additionally, a prospective cohort study of users of an online ACP platform identified a 4.9-fold increase in online AD completion since the COVID-19 pandemic began.(16)

Although AD completion rates have been assessed in the context of general patient populations and COVID-19, to the best of our knowledge, no studies have assessed the impact of COVID-19 on AD completion specifically in healthcare workers. Thus, the goal of our study was to investigate whether the pandemic had an impact on the completion rates of ADs among healthcare workers. We hypothesized that COVID-19 would spur discussions of ACP and end-of-life care among healthcare professionals and that it would make those who do not already have advance directives more likely to complete them in the future.

Methods

Data Collection

A cross-sectional, anonymous, voluntary online survey was disseminated via e-mail, social media, and word-of-mouth (snowball sampling) to healthcare workers via Qualtrics (Qualtrics, Provo, UT). The survey included 35 items to document demographics, AD completion, and perceptions of participants regarding matters related to COVID-19. Data were collected between August 1, 2020 and November 1, 2020. The protocol was approved by the Institutional Review Board of Florida Atlantic University (IRB Net ID 1620495-1).

Study Participants

Participants had to be 18 years old or older. Respondents were asked if they were or had been healthcare workers. The surveyed healthcare workers included individuals who work or have worked in hospitals, hospice, outpatient offices, nursing homes/long-term care facilities, or in the field as emergency medical technicians. Occupations of healthcare worker respondents are shown in Table 3.

There was a total of 3301 responses to the survey. Of the 3301, 2006 individuals identified as non-healthcare workers, 1284 as current or previous healthcare workers, and 11 individuals did not respond. Of the 1284 healthcare workers, 770 responded to specific questions related to AD completion. Other demographic information collected from the sample included age, gender, race, relationship status, parenthood status, and state of residence.

Our study sought to answer the following questions, primarily in the healthcare worker population:

1. Since the onset of the COVID-19 pandemic, have you talked with family or friends about your wishes in case you became critically or terminally ill?

2. Do you have advanced directives?

3. If you do not have advanced directives, has your experience with COVID-19 made you more or less likely to complete advance directives of your own?

Statistical Analysis

Data were exported to SAS Version 9.4, Cary NC for analysis. Bivariate analyses were conducted using Wilcoxon Rank Sum or Kruskil-Wallis tests for associations between continuous and categorical or short-scale ordinal variables, and chi-square or Mantel-Haenszel chi-square tests between categorical and categorical and short-scale ordinal variables, respectively. Multiple logistic regression was performed to assess the association between dichotomous or ordinal outcomes and demographic and behavioral independent variables.

Results

A total of 3301 respondents completed the survey. The average age among all respondents was 48.2 years (range 18 – 86). Most of the participants identified as being female (71.3%), White/Caucasian (79.9%), married (61.0%), parents (67.3%), and Florida residents (68%).

The Impact of COVID-19 on All Respondents

All respondents, including current or previous healthcare workers (n = 1284) and non-healthcare workers (n = 2006), were asked to report whether they had spoken with family or friends about their wishes in case they became critically or terminally ill, specifically since the onset of the COVID-19 pandemic (11 incomplete responses) (see Table 1). Of the 3301individuals surveyed, 35.5% (n = 1099) reported that they had spoken with family or friends regarding their wishes since the onset of COVID-19, and 64.5% (n = 1994) reported that they had not done so since the onset of COVID-19 (208 incomplete responses). Out of 2006 individuals who identified as non-healthcare workers, 68.9% of respondents had not spoken about their wishes since the onset of COVID-19 while 31.1% of respondents reported they had. Similarly, 56.8% of healthcare worker respondents had not spoken to family or friends about their wishes since COVID-19, while the remaining 43.2% had.

Healthcare Workers and Advance Directives

For the purposes of this survey, only healthcare workers were asked specifically about ACP (e.g., ADs). Of the 1284 healthcare workers, 770 (60.0%) responded to the AD question. Of this subset, 53.9% (n = 415) did not have ADs in place at the time of the survey, 44.4% (n = 342) reported already having ADs, and 1.7% (n = 13) were unsure of their AD status. Among healthcare workers, factors that were significantly related to AD completion were: Florida residence, with those in Florida more likely to have ADs compared to residents of other states; student status, with healthcare students less likely to have ADs; and age, with older respondents (those over 40 years of age) more likely to have completed ADs compared to those under the age of 40 (Table 2). No other variables, including gender, race, and relationship status, and being a parent, were significantly associated with already having completed ADs (see Table 2). Further, occupation was not significantly related to AD completion (Table 3).

Healthcare Workers Without Advance Directives

Of the healthcare workers who did not have ADs, 49.8% (n = 206) reported that COVID-19 has not changed their opinion regarding completing Ads; 49.5% (n = 205) of participants reported that their experience with COVID-19 has made them more likely to complete ADs of their own; and 0.7% (n = 3) reported that they were less likely to complete ADs. Factors that were significantly related to a greater likelihood of AD completion among the healthcare workers who reported not having them at the time of the survey were having patients die from COVID-19 (p = .0103), being Asian (p = .0129), and not being a student (p = .0061) (Table 4).

Discussion

As of November 2021, over 700,000 individuals have died of COVID-19 in the United States.(13) It is unknown at this time how many of these individuals had any form of ACP, including ADs. Although a few studies have demonstrated increased demand for ADs during the COVID-19 period, it is unclear which populations are completing them. Numerous studies have mentioned that the same disparities that permeate all aspects of healthcare trickle into ACP, with factors such as race, age, and socioeconomic status contributing, at some level, to AD completion rates. Discussions of end-of-life care and ACP are essential in promoting congruency between a patient’s wishes and their care, as well as alleviating the burdens of decision-making on loved ones and the healthcare team. Although healthcare workers are encouraged and often reimbursed for having discussions with their patients about ACP, there is a lack of data surrounding AD completion specifically among healthcare workers who work in hospitals, hospice, outpatient offices, long-term care facilities, and in the field as emergency medical technicians. In our study, we sought to determine AD completion rates among healthcare workers and whether COVID-19 had spurred discussions about end-of-life care or made individuals who do not have ADs more likely to complete them.

Our study found that a majority of individuals, both healthcare workers and non-healthcare workers, have not discussed their wishes with family or friends since the onset of COVID-19. (It is unclear whether these individuals have had these discussions before COVID-19.) Although it is reasonable to assume that a subset of participants has had these discussions before, but not since, the onset of COVID-19, these results still correspond to much of the existing literature regarding ACP. A trend among these types of studies often reveals that larger proportions of individuals report having conversations with loved ones regarding end-of-life care, but a minority of respondents actually possess written ADs. To increase completion rates by all individuals, a greater emphasis must be placed not only on these conversations between healthcare workers and patients, but also on the completion of the ACP process with written documentation.

Our results demonstrated that most healthcare workers did not have ADs in place at the time of the survey. Although our study population had higher proportions of individuals who identified as white, married, and with children, AD completion was not found to be directly related to the factors of race, relationship status, or having children. Although these findings may be attributable to our limited sample, it may suggest that other factors exist that are more strongly associated with AD completion. Factors significantly associated with AD completion in our study include age, student status, and Florida residence. Although our sample consisted mainly of Florida residents, a higher proportion of these individuals had written documents compared with residents of other states in our study. Potential factors contributing to this finding may involve differences inherent to geographic location, which may include race, average age of the population, cultural norms of the area, and perhaps even differences in healthcare delivery. Older individuals (those over 65) were more likely to have ADs, which is consistent with the findings of the studies mentioned earlier. In the context of ACP, older individuals may have more exposure to healthcare systems, because they often differ in their state of health compared with younger individuals. In addition, they also may be introduced to ACP more frequently compared with younger people or have an increased level of comfort with end-of-life discussions, perhaps related to their experiences in dealing with deaths of their parents or loved ones. Finally, student status was associated with decreased AD completion rates, which could be attributed to age, level of training, lack of knowledge, current state of health, fear, or procrastination.

Although we had hypothesized that COVID-19 would have a more substantial influence on increasing the likelihood of future AD completion among healthcare workers without ADs, a slight majority reported that COVID-19 had not changed their opinions. Factors related to an increased likelihood of future AD completion, however, included race, occupation, and depth of experience with COVID-19. Compared with other races, Asian subjects reported being more likely to complete ADs in the future. Additionally, the non-student healthcare workers (e.g., physicians, nurses) had an increased likelihood of future AD completion; this is likely a function of age, level of training, and knowledge. Lastly, exposure to COVID-19 was significantly related to AD completion. Interestingly, exposure to patients with COVID-19 was not an associated factor, but, rather, patient death due to COVID-19 was associated with an increased likelihood to complete ADs in the future. This suggests that deeper and more meaningful firsthand experiences with COVID-19 may have a greater influence on individuals in terms of thinking of their own end-of-life care.

Study Limitations

Limitations of this study include demographics, sample size, and access. A majority of the respondents were white or Caucasian, female, married, and residents of Florida. Further, the Web-based nature of the study required Internet access and a smartphone or computer for participation, which could potentially introduce bias in terms of the sample population. As is inherent in any study of human responses, there are no means by which to validate the accuracy or truth to a participant’s responses or to control for any social desirability bias. The timing of this study also may have played a role in the findings—as COVID-19 cases and deaths continued to spike across the globe, and with the doses of the first vaccines being administered at the time of this study’s analysis, responses regarding end-of-life care are likely evolving as the pandemic persists.

Future Directions

To increase the awareness of and better gauge the completion of ADs, we seek to further monitor how perceptions have changed in healthcare workers since the onset of COVID-19. We also plan to explore how COVID-19 has influenced completion of ADs in the general population.

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