“Why Couldn’t I Go in To See Him?” Bereaved Families’ Perceptions of End-of-Life Communication during COVID-19

Abstract

Background/Objective:

The COVID-19 pandemic resulted in rapid changes to end-of-life care for hospitalized older adults and their families, including visitation restrictions. We examined bereaved families’ perceptions of the quality of end-of-life communication among Veterans, families and staff in Veterans Affairs (VA) medical centers during the COVID-19 pandemic.

Design:

Qualitative descriptive study using data from a survey of bereaved family members of Veterans administered from March-June 2020. Data were analyzed using qualitative content analysis.

Setting:

VA medical centers with the highest numbers of COVID-19 cases during the study period.

Participants:

Next-of-kin of 328 Veterans who died in one of 37 VA medical centers’ acute care, intensive care, nursing home, or hospice units.

Measurements:

Open-ended survey questions (response rate = 37%) about family member’s perceptions of: 1) communication with the healthcare team about the patient, 2) communication with the patient, and 3) use of remote communication technologies.

Results:

Families (n = 324) identified contextual factors perceived to impact communication quality including: visitation restrictions, concerns that the patient died alone, and overall evaluation of VA care. Characteristics of perceived high-quality communication included staff availability for remote communication and being kept informed of the patient’s condition and plan of care. Low-quality communication with staff was perceived to result from limited access to staff, insufficient updates regarding the patient’s condition, and when the family member was not consulted about care decision-making. Communication quality with the patient was facilitated or impeded by the availability and use of video-enabled remote technologies.

Conclusion:

Communication between patients, families, and healthcare teams at the end of life remains critically important during times of limited in-person visitation. Families report that low-quality communication causes profound distress that can affect the quality of dying and bereavement. Innovative strategies are needed to ensure that high-quality communication occurs despite pandemic-related visitation restrictions.

Introduction

Nationwide, isolation precautions necessitated by the evolving COVID-19 pandemic have upended traditional delivery of end-of-life care, shifting from intimate, in-person interactions to largely remote communications among providers, patients, and families, with some exceptions for in-person visitation at the immediate end of life.^1,2 Disruptions to communication between families and dying patients can have significant consequences, including patient isolation and risks of family members developing depression, anxiety, and complicated grief.^3–6 Yet, little research has evaluated families’ perceptions about the quality of communication at the end of life in hospitals with restrictive visitation policies in place. Therefore, we sought to explore family members’ perceptions of communication at the end of life between staff and patients within the Department of Veterans Affairs (VA), a healthcare system that implemented visitation restrictions across all care settings in response to the COVID-19 pandemic.

Methods

Study Design and Sample

This report shares the qualitative findings of a larger mixed methods study that was based on a VA operations initiative that examined the association between remote communication and bereaved family member’s ratings of end-of-life care quality during the COVID-19 pandemic (manuscript under review). The VA initiated restricted visitation policies beginning in March 2020. Data for this analysis were collected from open-ended questions from the Bereaved Family Survey (BFS) and VA electronic health record data. The BFS is a validated, quality improvement survey administered to the next-of-kin of Veterans who die in VA inpatient settings, with survey methodology described elsewhere.^7–10 The sample was comprised of bereaved family members of patients who died between March 17, 2020 and June 30, 2020 in one of 37 VA Medical Centers (VAMCs). These VAMCs were selected because they had the highest numbers of COVID-19 patients during the study period as identified through the VA COVID website¹¹ and as described in prior research (manuscript under review).

Procedures

Qualitative data were derived from three open-ended questions on the BFS that asked family members to share their perceptions of care and communication quality. The standard BFS includes two open-ended questions that ask: Is there anything else that you would like to share about the Veteran’s care during his last month of life? and, Is there anything else that you would like to share about how the care could have been improved for the Veteran? A third open-ended question was added to the BFS in March 2020 to evaluate perceptions of end-of-life care communication during the COVID-19 pandemic: Is there anything else that you would like to share about using remote communication between the Veteran and yourself during his/her last month of life or how VA could have improved that connection? Trained interviewers contacted families approximately two weeks after the patient’s death by phone during three separate attempts to complete the BFS. During the interview, the interviewer wrote down the family member’s response to each question, reviewing each response with the family member to verify accuracy. A total of 328 surveys (37.1% response rate) were completed during the study period. We collected patient demographic and clinical data from VA electronic health records, including the ICD-10 principal diagnosis at the terminal admission, and documentation of life-sustaining treatment preferences. Because this analysis was conducted for operations and quality improvement purposes, it was determined to be non-research.

Data Analysis

Content analyses was used to code and analyze the three BFS open-ended questions.^12,13 Responses were analyzed in Microsoft Excel. Two authors (SLF, ME) reviewed and coded 37% (n = 121) of respondent rows independently then jointly, meeting to create, revise, and finalize the code key. Coding and code key development focused on perceptions of communication quality. Coding discrepancies were resolved via coding team consensus. The remaining rows were coded independently with the team meeting to discuss progress and address coding issues as they arose. Codes were then clustered and grouped by theme. Team members kept an audit trail of all coding and analysis decisions and themes were member-checked with the entire research team. Descriptive statistics were used to examine patient demographic and clinical characteristics. We also calculated code frequencies for the contextual factors perceived to influence communication quality.

Results

Of 328 decedents (Table 1), the mean age was 76 years (standard deviation 11.4), 96% of the sample were male, and 46.7% of the sample identified as white, non-Hispanic. Of the sample, 40% had a COVID-19 diagnosis, and 66% died in an intensive care or other acute care unit. Ninety-four percent of the sample had a documented goals of care conversation for life-sustaining treatment preferences at the time of death.

Table 1.

Patient Demographic and Clinical Characteristics (N=328)

Patient Characteristic	N (%)
Age: mean years (SD)	76 (11.4)
Male gender	316 (96.3)
Race/Ethnicity:  Non-Hispanic White  All other race/ethnicity  Unknown	153 (46.7) 167 (50.9) 8 (2.4)
Next of Kin Relationship:  Spouse/partner  Child  All other relationships	113 (34.5) 116 (35.4) 99 (30.0)
COVID-19 Diagnosis	132 (40.4)
Venue of Death:  Intensive Care Unit  Acute Care Unit  Community Living Center  Hospice/Palliative Care Unit	122 (37.2) 93 (28.4) 46 (14.0) 67 (20.4)
Completed Life-Sustaining Treatment Order	309 (94.2)

Contextual Factors and Perceptions of Communication with Staff and the Patient During Restricted Visitation

Of the total sample of 328 decedents, 324 family participants responded to at least one open-ended question providing responses used in the qualitative analysis. Participants identified several contextual factors that were perceived to influence communication quality during restricted visitation including visitation restrictions, the subsequent emotions of fear and distress that the patient died alone, as well as family members’ overall evaluation of care quality during the COVID-19 pandemic (Figure 1, Table 2). Themes and subthemes of communication quality during restricted visitation were categorized by subject (staff, patient), and by perceived quality (high-quality, low-quality; Table 2).

Figure 1.

Quality of End of Life Communication with Restricted Visitation During the COVID-19 Pandemic

Table 2.

Contextual Factors and Themes of Communication During Restricted Visitation at the End-of-Life

Contextual Factors of Communication Quality
Theme	Description		Exemplar Quote
Not allowed in	Reports by the family member that they were not allowed in to see the patient at the end of life		“I was not allowed because of COVID but they didn’t ask me anything.”
The Veteran died alone	Distress that the patient was perceived to have died alone		“If they go to Hospice, I believe the family needs to go see him. After fifty years being together, I would of liked to share that moment.”
The VA did the best it could	Perception that staff were under duress but persevered in providing good care		“I was very satisfied and I feel they did the best they could.”
Themes, Subthemes, Descriptions and Exemplar Quotes of Communication During Restricted Visitation at the End-of-Life
Theme	Subthemes	Description	Exemplar Quote
Communication with staff was high-quality	Access to staff	Family members had access to staff to ask questions/communicate concerns	“He couldn’t talk. It was extraordinary of the staff to call me every day.”
	Kept informed	Staff kept family informed about patient care	“They kept me aware daily.”
Communication with staff was low-quality	Staff were inaccessible	Difficult to reach/communicate with staff, and/or providers did not answer/return calls	“He went to the emergency room for the COVID test and we kept calling for the results and nobody called for over 3 weeks.”
	Not kept informed	Did not receive timely information about the patient’s condition or planned procedures	“I did not receive a call when my husband died. When the doctor did call he was colder than an ice cube.”
	Not consulted	Family members felt they were not consulted regarding care decisions	“He was given an experimental drug, hydroxychloride, that was approved without permission and that did bother us.”
Communication with the Veteran was high-quality	Available technology	Perceptions that communication was effective because of remote technology	“Facetime should be mandatory if the family wants it - it made all the difference.”
	Technology available but not desired	Appreciation that remote communication was available but preferred not to use it	“They talked about video conferencing, but I didn’t want to do that.”
Communication with Veteran was low-quality	Limited communication when desired	Perceptions that communication with the Veteran was limited or difficult to conduct	“I wished before he went on the ventilator that I would have liked to speak to him more than that one time.”
	Technology not available	Technology was not offered, not functional, or staff was not available/trained to assist the Veteran	“He had no idea how to use Zoom and no one helped him. iPad wasn’t offered. So inadequate for hospice patient.”

Contextual Factors of Communication Quality

Visitation restrictions often set the tone and provided context for subsequent perceptions of communication with staff and the patient. For example, 27% of family members reported that they were not allowed in to see the patient at the end of life. Family members frequently connected not being allowed in to see the patient with perceptions of low-quality communication, end-of-life care, and concerns that the patient would ultimately die alone. One family member stated, “Why couldn’t I go in to see him? I feel hurt. I can’t do anything to bring him back.” Conversely, perceptions that the VA was providing the best care possible given visitation restrictions as a result of the COVID-19 pandemic were also common. In these cases, family members’ positive views of VA care within the context of the COVID-19 pandemic later influenced perceptions of communication quality. For example, “It was hard to communicate with him under the circumstances” a family member reported, “but I understood that.”

Perceptions of Communication with Staff

Family members frequently reported two characteristics felt to be representative of high-quality communication with staff during restricted visitation. These included: 1) easy access to staff to ask questions about the patient’s care and communicate concerns, and 2) being kept informed about patient care decisions. For example, a family member stated, “He couldn’t talk. It was extraordinary of the staff to call me every day.” Conversely, characteristics of low-quality communication included inaccessible or difficult-to-contact staff, not being kept informed about the patient’s medical condition, and perceptions that family members were not consulted about preferences for medical procedures or treatments. Often, this perceived lack of communication with staff led to fear and angst on the part of the family (“I would call to get an update and quite frequently the nurse wouldn’t return my calls. Then I was terrified.”), as well as perceptions of low-quality end-of-life care (“They didn’t give him a fighting chance. They didn’t ask me questions.”).

Perceptions of Communication with the Patient

Family members’ views of the quality of communication with the patient were closely linked to the use and availability of remote technology. “The last time we saw him he was unconscious,” a family member reported, “the nurse FaceTimed us when he woke up. That was very special.” Family members appreciated remote communication, even in instances when it was not necessarily desired by the family or feasible because of the patient’s cognitive, hearing, or visual limitations; for example, “They wanted me to FaceTime, but I didn’t want to have that memory of what he looked like before he passed.”

Limited access to remote technology, or remote technology that was faulty, complicated for staff or the patient to operate, or inaccessible due to poor staff training, was viewed as contributing to low-quality communication with the patient, and often perceptions of low-quality end-of-life care. A family member reported, “No one ever offered me any video, or FaceTiming with my father. My father died without ever seeing me or me seeing my father for the last time.” Moreover, family members expressed frustration at the perceived lack of staff support to facilitate remote communication between the family and the patient. “He had no idea how to use Zoom and no one helped him” a family member said, “so inadequate for hospice patient.”

Discussion

In this study, we found that high-quality communication at the end of life during restricted visitation is feasible and is promoted using video-enabled remote technologies to allow face-to-face interaction with patients. It also encompasses communication that addresses access to staff, care plan information, and family members’ desires to be included in the patient’s care, even while not physically present. Our findings have implications for health care systems that wish to improve the care experience of family members of dying patients during the COVID-19 pandemic and beyond. Study findings emphasize the importance, and the need, for effective strategies to increase both the quantity and quality of remote or tele-communication between family and staff. Telehealth, or the use of tele-communication to provide healthcare using telephone and/or videoconference technologies has greatly expanded during the COVID-19 pandemic with several noted benefits including reducing patient isolation in the intensive care unit and facilitating communication (e.g., patient-family, caregiver-provider),¹⁴ and as a means to increase access to palliative care clinicians who can act as resources for other frontline clinicians.¹⁵ However, as previous findings,^16–18 as well as our findings suggest, healthcare facilities cannot simply have videoconferencing technology available for patients. Training of hospital staff and support of the patient in the use of these technologies, particularly for older adults who may have cognitive, visual, or hearing impairments, is essential for successful remote-assisted communication.

Twenty-seven percent of respondents reported that they were not allowed in to see the patient before death. This finding was surprising given that in March 2020 the VA issued guidance restricting visitation to in-person “compassionate care” visits for only those patients at the end of life. Such guidance relies on accurate prognostication to identify patients nearing the end of life, however clinicians are often unable to accurately prognosticate, particularly in acute care settings.^19,20 In our study, 66% of patients died in acute care and intensive care units and over 40% died of COVID-19, a condition known to have unpredictable, yet at times rapid, decompensation.^21–24 These characteristics likely made it difficult for clinicians to determine when to call in family for compassionate care visits. Such visitation policies were created in response to concerns over infection control and safety during the COVID-19 pandemic. Yet, policies that result in families potentially missing crucial end-of-life care communication with patients could result in long lasting and detrimental effects, including symptoms such as depression and anxiety, and an increased risk of complicated grief.^3,4 Our findings articulate the intense anguish and despair families experience from “not being allowed in” to see the patient, underscore family members’ pervasive wishes to be at the bedside, and link the emotional consequences of “not being allowed in” to negative perceptions of care and communication quality. Given these findings, healthcare systems may need to reconsider policies that limit family visitation with patients in their last hours or days, and rather, allow for broader visitation for patients who are acutely or critically ill with appropriate precautions, as the risks of restrictive visitation policies may in some cases outweigh the perceived benefits.

This study had several limitations. The overall response rate to the survey was 37%, a rate that is similar to other family-reported quality surveys administered by phone²⁵, however nonetheless may impact the transferability of study findings. The study was conducted in the VA with a mostly male population. While generalizability is not typically the intention of qualitative research,²⁶ we believe our findings are transferrable to other patient populations experiencing remote communication and visitation restrictions due to COVID-19. The survey design of the study limited our ability to probe respondents to open-ended responses. Finally, we did not audio record surveys which could mask inaccuracies in transcription, however, interviewers reviewed responses with family members prior to transcription, enhancing data accuracy.

This qualitative study examined perceptions of end-of-life care communication among families of older Veterans who died in inpatient VA settings during the first months of the COVID-19 pandemic. Families emphasized the importance of face-to-face contact, either in-person or through remote communication, in facilitating closure and easing end-of-life transitions with implications for care during and after the COVID-19 pandemic. Study findings underscore the possibility for effective remote communication at the end of life through communication strategies that increase access to staff, keep families informed, and promote face-to-face communication with dying patients through remote video-enabled technology.

Key points:

• Communication between patients, families, and healthcare teams at the end of life remains critically important during times of limited in-person visitation.

• Low-quality communication causes profound distress that can affect the quality of dying and bereavement.

• High-quality communication at the end of life is promoted through the use of remote communication technologies.

This paper describes bereaved family members of older adults’ perceptions of high and low-quality end of life communication during restricted visitation as a result of the COVID-19 pandemic.