Skilled Nursing Facility COVID-19 Advance Care Planning: A Qualitative Study of Staff Perspectives

Many people receive care at a skilled nursing facility (SNF) at the end of their lives, with 1.16 million Americans currently living in SNFs.¹ Before the pandemic, median survival following SNF admission was 2.2 years, and the annual mortality rate was 31.8%.² As health declines, advance care planning (ACP) and continued discussions about the goals of care play an important role in honoring the wishes of SNF residents and their families.³ Given the medical complexity and advanced illness of most SNF residents, there have been many efforts to better understand residents’ treatment preferences to optimize care.⁴ Programs have provided training and support for broader conversations about goals of care.⁵ Implementation of high-quality ACP interventions are time and resource intensive, relying heavily on staff education.⁶

The COVID-19 pandemic has had a significant impact in SNFs, resulting in more than 200,000 SNF resident and staff deaths since the pandemic started.⁷ In March 2020, in preparation for COVID-19 outbreaks, many SNF staff were asked by facility leadership to revisit goals of care with all residents.^8,9 Rapid expansion of ACP during the COVID-19 pandemic was a significant challenge. This study explores the experiences of SNF staff who facilitated ACP conversations during COVID-19 outbreaks. The goal of this study is to describe staff perspectives, measure the emotional impact, understand practical barriers, and collect creative solutions to facilitating ACP discussions in a crisis.

Study Design

We designed a cross-sectional, qualitatively driven study to describe the experiences of SNF staff conducting ACP during an initial COVID-19 outbreak.

Recruitment

From November 2020 through April 2021, we contacted 43 Midwest SNFs either previously involved in a US Centers for Medicare & Medicaid Services (CMS) demonstration project¹⁰ or currently involved in the SNF COVID-19 Action Network. Eleven SNFs agreed to participate, and facility leadership provided contact information for staff who completed ACP discussions with residents and families during a COVID-19 outbreak. Thirty-two SNF staff members were contacted via email, resulting in 17 in-depth telephone interviews.

Data Collection

Telephone interviews were conducted by EK (SNF physician and medical director), and TG (experienced qualitative interviewer). A semi-structured interview guide was used to direct interviews, including a brief questionnaire about COVID-19 exposure and ACP conversation characteristics and two validated psychological measures. Participants rated their stress levels with the Patient Health Questionaire-4 (PHQ-4) and Impact of Event Scale-6 (IES-6). The PHQ-4 measures self-reported depression and anxiety by combining the PHQ-2 and Generalized Anxiety Disorder-2 (GAD-2), two well-validated tools.¹¹ In consultation with the developer of the PHQ-4 measure (Kroenke), the 2-week timeframe was modified to the past few months to investigate the onset of symptoms over a several-month timeframe as a possible consequence of the pandemic. The IES-6 is an abbreviated version of the Impact of Event Scale Revised, a larger scale that is widely used to capture three symptom clusters of posttraumatic stress disorder (PTSD): intrusion, avoidance, and hyperarousal 2 weeks or more after a traumatic event.¹² The cutoff for possible PTSD is a mean score of 1.75, which has been shown to have good sensitivity (0.88) and specificity (0.85) in screening for PTSD, and has been applied to health care workers in the MERS pandemic.^13,14

Demographic information, COVID-19 exposure, ACP conversation characteristics, and stress response were entered into a secure database for descriptive analysis. In-depth interviews provided robust data for qualitative analysis. Survey data and stress scales were used to complement the qualitative data describing the SNF staff experience. This study was considered human subjects research and approved by the Indiana University Institutional Review Board. Participants did not receive any financial incentives.

Data Analysis

Interviews were audio recorded, transcribed, and entered into NVivo12 (released in March 2020) for data management. Five investigators interpreted the interview data using thematic analysis.¹⁵ Each investigator independently reviewed two transcripts to create an initial codebook using inductive coding. Portions of text and provisional codes were compared in a series of iterative consensus-building meetings until no new codes emerged.¹⁶ Two team members (EK and TG) then applied the codes to the transcripts. Six interviews were coded by both analysts to confirm coding consensus. To ensure systematic analysis, investigators continued to go back and forth between the data, codes, and themes throughout the entire analysis. The analytic team met and corresponded to discuss and review the preliminary themes and create final themes.

The 17 interviews took place from March 2020 through December 2020. Most interview participants (15/17, 88%) represented either nursing leadership or social services, and two administrators were included as they participated in goals of care discussions during the pandemic. On average, interviews were conducted 4 to 8 months after each facility’s initial outbreak and before the second wave of the pandemic.

Table 1 provides demographic information and COVID-19 exposure. Six of the seven facilities are in a metropolitan area. Among the seven facilities, four unique organizations were represented.

Table 1. Demographics and COVID-19 Exposure of SNF Staff^a

^aThis sample of 17 SNF staff largely represented nursing leadership and social services. Over half the staff in this sample had been in their role for less than 5 years. This workforce has been significantly impacted by COVID-19 with a large majority caring for residents with COVID-19 and experiencing COVID-19 mortality.
 

ACP Characteristics Questionnaire Data

Survey data collected identified these ACP conversations were similar to pre-pandemic conversations. These conversations continued to involve the interdisciplinary team, and the majority (76%) reported duration of conversation to be 10 to 40 minutes. The greatest trigger for ACP conversations included resident and family desire (11/17, 65%) and change in clinical course (15/17, 88%). The greatest pandemic difference identified was ACP conversation frequency, with 65% (11/17) of participants addressing goals of care weekly with residents and families and 59% (10/17) addressing goals of care multiple times a week versus quarterly at care plan meetings.

As participants were adapting to new protocols and communicating with families at an increased frequency, staff stress was also investigated. At the time of facility outbreak, most participants (82%) rated their stress as an 8 out of 10 or greater. When recalling their stress over the past few months, half (53%) experienced severe symptoms of depression and anxiety indicated by total PHQ-4 score.

Although stress decreased to an average of 5 out of 10 at the time of the interview, five participants (29%) scored at or above the mean IES-6 cutoff (1.75), indicating possible PTSD. Table 2 provides PHQ4 symptom category frequencies, IES-6 question stems, and participants’ mean score per question.

Table 2. Patient Health Questionnaire-4 and Impact of Event Scale-6 Symptom Frequency^a

^aOver half the participants scored a 9 or above on the PHQ-4, indicating possible severe depression and anxiety.¹³ Regarding the IES-6, each question’s mean score and overall mean score was reported. Half of the question stems were above the cutoff, 1.75, and the total mean score of 1.7 approached the cutoff to meet the criteria for possible posttraumatic stress disorder (PTSD).¹⁴ When looking at individual scores, five participants score at or above the cutoff concerning for possible PTSD.
 

Qualitative Results

We identified two major themes from participant interviews regarding goals of care conversations during the pandemic: (1) Staff were experiencing an intense emotional response to the COVID-19 outbreak; and (2) disease-specific education and resources are important in crisis ACP preparedness. These themes are illustrated with direct quotations and theme 2 consists of two subthemes.

Theme 1: Staff were experiencing an intense emotional response to the COVID-19 outbreak.

The quotes below help describe the stress response and sources of stress. A deeper understanding of the emotional impact is important in creating better support in future crises. Two participants described their emotional reaction:

                          “You felt basically helpless against an invisible virus, just completely consuming your facility, and it doesn't seem to help anything you do. It's faster than you are.”

                          “I went into a depression, I put on 15 extra pounds, I ate, I isolated myself, and I wasn’t taking care of me.”

In addition to feeling down, participants reported symptoms of insomnia. For example:

                          “I was tired. I wasn't sleeping…My stress level was very, very high.”

During an outbreak, there was also an overwhelming sense of fear:

                          “I think that the greatest challenge was fear. Fear of the unknown.”

Some expressed fear of infecting others:

                          “What if I were to give this to my husband or my children. And now I personally can't even go see my mom or my dad, because I'm too afraid.”

                          “I wouldn't go to the grocery store because I was afraid… I don't even want to get my own gas; I don’t even want to be out. It's something you think about 24/7.”

Participants reported intrusive thoughts when embarking on the second wave of the pandemic:

                          “Just the resurgence of it, still takes me back to the initial encounter.”

Participants also reported hypervigilance:

                          “Every time somebody coughed or sneezed or didn’t eat, my heart would instantly drop… at that point my mind went to fight or flight of [thinking] do they have COVID?”

Lastly, some participants avoided showing their stress:

                          “I had to be the bigger person, so don't get me wrong. It's stressed me out ... but I couldn't let my residents see that. I couldn't let my families hear that because I had to be.”

While we asked participants about psychological supports, participants’ response was variable and no major theme emerged that warranted further investigation.

Theme 2: Disease-specific education and resources are important in crisis ACP preparedness.

The subthemes we identified surrounded facility COVID-19 education and availability and usage of COVID-19 specific ACP scripts.

SUBTHEME 1: DISEASE-SPECIFIC EDUCATION INFLUENCED STAFF’S COMFORT WITH GOALS OF CARE CONVERSATIONS.

Some SNF staff described feeling uncomfortable with ACP conversations due to initial uncertainty of clinical course, treatment options, and prognosis. One participant reflected upon conversations with families in the setting of a new COVID-19 diagnosis:

                          “It was scary. It’s all unknown, the families had questions that we couldn’t answer because we couldn’t get answers…It was uncomfortable for us and them; they lean to us for knowledge, and we didn’t have it.”

Some reported disease-specific ACP-specific education was lacking, leaving staff feeling unprepared, for example:

                          “I feel like we were calling and telling them, your loved one has COVID-19. That's really it. There was no way to reassure them of what to expect during the process. We were making it up as we go.”

Commonly, frontline SNF staff described acquiring COVID-19 specific clinical information by:

                          “…corporate calls that were trickling down… we were getting educated as far as department heads ...then after… corporate calls would be the education to staff on the floor.”

Generally, participants were satisfied with communication from leadership. However, inadequate communication did occur at some facilities. At one facility, a participant shared:

                          “Our company would talk with the higher-ups but then it didn’t get to the floor staff.”

In response, the director of nursing became a facility “COVID Champion” by leading huddles¹⁷:

                          “We needed more… she started doing her own research, reaching out to other people, getting in on more calls, so she’s the one that actually made it a lot easier in our center.”

As the pandemic evolved and staff responded to available education, some staff found their comfort level with pandemic ACP increased:

                          “It became a lot easier to talk to them because I had more information, so I was able to help them more.”

SUBTHEME 2: ACCESS AND IMPLEMENTATION OF COVID-19 ACP-SPECIFIC SCRIPTS AND RESOURCES WAS VARIABLE.

An SNF staff member identified needing specific training for facilitating ACP during a pandemic:

                          “We’ve been social workers forever, but I feel like we needed a different approach with the virus.”

Specifically, interviews revealed how participants had varying access to COVID-19 ACP scripts and structured tools. Nine participants (53%) reported having access to scripts or discussion guides, four of whom (44%) found the provided discussion tools helpful. For example:

                          “This is a script at least to get you going on the conversation” and it aided content of discussion “what to tell, and how to explain it.”

Some scripts provided were broader and not specific to ACP:

                          “I was given a script when we were calling family to let them know about positive cases in the building, but I wasn’t given a script for advance care planning.”

                          “To explain what our policies and procedures are; what are we doing to keep residents safe.”

Participants voiced reservations regarding scripts:

                          “As soon as you said ‘Mom, Dad, Aunt, or whoever has COVID,’ they all just basically cut you off and started rambling and asking a million questions. I feel like it would’ve been close to impossible to follow the script.”

The goal of this project was to describe the SNF staff’s experience facilitating ACP discussions with residents and families during a time of crisis. As interviews were conducted, the participants shared the emotional toll of communicating with residents and family during the COVID-19 pandemic. Identifying and describing the emotional impact of a COVID-19 outbreak provides insight on how to support SNF staff tasked with facilitating ACP. As staff scrambled to review advance directives, they also dealt with their own feelings of depression and anxiety which put them at risk for PTSD. This raises a key concern: how can we care for staff emotionally as well as support them in conducting high quality goals of care discussions? As Shanafelt and colleagues¹⁸ have suggested, it is not enough to retain SNF staff; they must stay and perform at their highest potential for extended periods throughout the pandemic to care for residents. Drawing from listening groups, health care workers created five overarching requests from their organization: hear me, protect me, prepare me, support me, and care for me.¹⁸ Data from study participants centered on two critical requests: “prepare me” and “support me.” During this time of high staff stress, participants identified diseases specific education and resources as instrumental in feeling supported and prepared.

Our participants largely relied on corporate education, facility leadership, and broader organization-wide scripts to assist with COVID-19 related communication with families and residents, including ACP discussions. Although frontline SNF staff were hungry for disease-specific ACP training, they questioned their ability to follow a script in such emotionally charged circumstances. Recent studies have begun to address COVID-19-specific ACP discussion guides. Guar et al. developed a structured approach to COVID-19 ACP.¹⁹ Ten medical directors provided feedback, and staff evaluating Guar’s structured tool valued the comprehensive information to aid residents and surrogate decision makers. Berning and colleagues²⁰ also implemented an approach to COVID-19 ACP. Unique to this innovation, the Director of Palliative Care Services served as an ACP Champion, like the COVID Champion described by our participant. Both approaches align with our participants’ preferences for disease-specific ACP tools to reassure family members under atypical conditions. When implementing a structured discussion guide, these interviews identified that tools need broad and consistent dissemination to the frontlines across regions and corporations.

Few studies that have investigated the mental health impact of the pandemic on SNF staff. One US study described SNF staff experiencing burnout due to increased workloads, staffing shortages, and the emotional burden of resident care; likewise, communication from management was identified as an important factor in job performance, exemplifying the critical role of facility education.²¹ Our participants agreed facility COVID-19 education impacted their conversations and having a “COVID Champion” to ensure adequate information mattered. The need for continued psychological assessment and support is highlighted by almost one third of participants in this study indicating possible PTSD. Senczyszyn and colleagues²² found access to personal protective equipment, clear safety guidelines, and access to psychological support resulted in less staff distress. Best practices in consistent, effective emotional support strategies for SNF staff are still emerging.

We note several limitations in this study. First, this was a convenience sample of Midwest facilities proactive in quality improvement initiatives and may not represent the broader national SNF staff population or conditions in other countries. Second, the participants involved in our study can be considered SNF staff survivors as they did not leave the profession during the pandemic and may differ in characteristics and experiences from those who left the profession. Third, we acknowledge that while sufficient for a qualitative analysis, the small sample size limits the utility of survey data and self-report scales. To account for the small sample size, we conducted in-depth interviews and clarified participant responses in real-time.

SNF staff experienced high stress during the COVID-19 pandemic. Despite the emotional toll on SNF staff during an outbreak, they had increased responsibilities, including the need to assess resident and family goals of care in the new context of COVID-19. Understanding staff sources of stress, depression, anxiety, and fear and how these connect with delivery of high-quality resident care is an important research question for further investigation.

It is crucial SNF staff are prepared with adequate clinical education. Like the COVID Champion described above, a subject matter champion is recommended to support and prepare the frontline staff. SNF staff need continued psychological support and disease-specific education to execute high-level goals of care conversations in a crisis.

Ellen W. Kaehr, MD, CMD¹ • Tayler M. Gowan, BS² • Elizabeth E. Hathaway, MD³ • Kathleen T. Unroe, MD, MHA^1,2 • Nicholas A. Rattray, PhD^1,2,4

Affiliations:
¹Department of Internal Medicine and Geriatrics, Indiana University School of Medicine, Indianapolis, IN
²Regenstrief Institute, Inc, Indianapolis, IN
³Department of Psychiatry, Indiana University School of Medicine Indianapolis, IN
⁴VA HSR&D Center for Health Information and Communication, Roudebush VA Medical Center Indianapolis, IN

Disclosures:
The authors report no relevant financial relationships.

Address correspondence to:
Ellen Kaehr, MD, CMD
IU Health Physicians
1633 North Capitol Avenue, Suite 322
Indianapolis, IN 46202
Phone: 317-962-2929
Email: ekaehr@carelinehealthgroup.com

© 2023 HMP Global. All Rights Reserved.
Any views and opinions expressed are those of the author(s) and/or participants and do not necessarily reflect the views, policy, or position of the Annals of Long-Term Care or HMP Global, their employees, and affiliates.