Early Guided Palliative Care Communication for Patients With COVID-19 Receiving ECMO

This work was conducted at a single academic medical center, with data on the patient cohort obtained from an institutional review board–approved ECMO data warehouse. Data managers received detailed instructions and definitions to guide data entry. Accuracy was augmented as needed with manual medical record review, including error and validity checks that ensured all mandatory fields were completed. This analysis of clinical records was determined to be exempt from review by the institutional review board of the University of Maryland School of Medicine.

Patients aged 18 years or older with COVID-19 who were supported by ECMO between March and October 2020 were included in the cohort. All patients included in this study received care in the Lung Rescue Unit at the University of Maryland Medical Center in Baltimore, Maryland.

This study was a descriptive content analysis of guided in-depth meetings with families of patients with COVID-19 receiving ECMO, as gathered from the electronic medical record. Palliative care specialists sought to promote clear communication between critical care clinicians and patients’ family members by providing a specially developed script for initial family meetings in which ECMO therapy was to be discussed. Data were collected from medical record documentation of semistructured interviews and were analyzed using framework analysis.

The palliative medicine team consisted of trained physicians, nurses, nurse practitioners, social workers, pharmacists, and chaplains. Child life specialists were included in family meetings. The ECMO and critical care team consisted of critical care physicians and advanced practice intensivists.

Given the high complexity of the patients’ conditions and the number of interdisciplinary clinicians, uniform verbal and written messages were developed to promote clear communication between clinicians and families and to reduce the risk of miscommunication. Clinicians from palliative care, critical care, surgery, nursing, and social work departments participated in a 2-hour simulation workshop that included role playing of various theoretical scenarios, enabling clinicians to practice a tailored script (see Supplemental Table, available online only at ajcconline.org). The script was designed to promote consistent communication and ongoing patient-family engagement in medical decision-making.

Specific hospital protocols were developed such that an interdisciplinary ECMO acknowledgment meeting with family members was planned within 48 to 72 hours of ECMO initiation. These meetings were designed to assess family members’ understanding of the complex nature of the ECMO procedure and their emotional state through the use of open-ended questions, active listening, and supportive counseling.

However, participation in family meetings was threatened by strict visitation restrictions during the COVID-19 pandemic. Telehealth video technology was used to replicate the in-person family meeting experience as best as possible. Family meetings sought to explore a patient’s goals and values and use shared decision-making to make care recommendations. Families were allowed to express emotions and, when appropriate, receive education on legacy activities to facilitate a patient’s narrative life review. Clinicians repeatedly affirmed nonabandonment throughout the entire course of ECMO care.

Subsequent conversations with families focused on building trust and maintaining realistic hope. When guided by the intensive care team, palliative care teams facilitated discussions regarding discontinuation of ECMO when no clinical benefit was being observed in order to reduce harm and further suffering of patients.

Family members’ quotes, as described in clinician documentation in the medical record, were analyzed by 2 independent investigators using software-assisted line-by-line coding to identify emerging themes with interrater reliability. Other outcomes measured included the timing and documentation of ECMO acknowledgment meetings, the number of documented i n-person and physical family visits, hospital length of stay, and discharge disposition.

Patient demographic and clinical characteristics are reported in Table 1. The study included 43 patients with a median age of 44 years (range, 37-53 years). Most patients were male (81%) and most were Hispanic/Latino (63%), followed by Black, other races, and White. Most patients had at least 1 comorbidity, including obesity, diabetes mellitus, hypertension, lung disease, and chronic kidney disease.

An ECMO acknowledgment meeting was documented by palliative care staff members for 26 of 43 patients (60%). Among these 26 patients, meetings took place within 3 days of ECMO cannulation for 19 (73%); most meetings (11 [42%]) occurred within 1 day of cannulation (see Figure). Owing to the volume of patient care needed and competing demands on health care workers’ time during the COVID-19 pandemic, meetings occurred later than 3 days after cannulation for 7 patients (27%).

Twenty-four of 43 patients (56%) survived to be discharged. Seventeen of 43 (40%) went to an acute care or rehabilitation facility, and 7 of 43 (16%) were able to return home.

The mean hospital stay was 44.9 days (range, 2-125 days). The mean intensive care unit stay was 41.3 days (range, 2-125 days). There was no significant difference in hospital survival or length of stay between patients with and without documented palliative care (ie, an ECMO acknowledgment meeting) (intensive care unit stay, 43.9 days vs 36 days, respectively; P = .76 by t test).

Analysis of clinicians’ notes uncovered the following themes in family members’ comments: (1) hope, (2) reliance on faith and spirituality, (3) multiple family members with COVID, (4) families with young children coping with a new normal, (5) visitation restrictions, (6) gratitude for clinicians and care, and (7) end-of-life discussions (Table 2). Most of the 43 patients used ancillary resources, including social workers (42 [98%]), pastoral care (40 [93%]), and child life specialists (4 [9%]). An ethics committee consultation was provided for 3 patients (7%). All patients’ family members had at least 1 documented telehealth video visit, with a mean of 5 video visits per patient. Seven patients (16%) had family members visit in person when cleared by infection prevention staff. Of 19 patients (44%) who died during hospitalization, 6 (32%) had family members present on video calls, and 2 (11%) had family members visit in person.

Although born out of the practice of hospice and end-of-life care, palliative care has expanded to providing care for patients at all stages of chronic illness. The American Thoracic Society’s clinical policy statement supports palliative care specialist involvement in the care of patients with respiratory diseases and critical illnesses with the aims of (1) relieving suffering by managing symptoms to improve quality of life and (2) helping patients define goals of care and make major treatment decisions.^21,22  Palliative medicine specialists are also helpful in mediating especially challenging care discussions, including navigating family conflict and indecision.^23-25 

Our study demonstrates that early and ongoing involvement of a palliative care specialist helps patients and families acknowledge and understand the complexity, benefits, and limitations of ECMO in patients with COVID-19. This study also highlights the range of experiences that patients and their families go through during critical COVID-19 illness, which is also the case with other clinical scenarios similar to COVID-19. The sentiments expressed by these patients’ family members are universal to situations in which families are faced with the uncertainty of a loved one’s critical illness and are forced to understand and accept its implications.

Our study has significant public health implications. The importance of family engagement and support in improving outcomes of care for hospitalized patients with serious and advanced illness is highly underestimated.^26-29  Improving clinical outcomes requires partnership between physicians, patients, and families to promote family members’ active participation in decision-making, honor patient preferences, and provide patient-centered care.^30-33  Unfortunately, family engagement has been significantly hindered by the COVID-19 pandemic, leading to terribly isolating experiences as patients and families handle individual suffering alone.³⁴ 

In a position paper, an international group of physicians, ECMO specialists, and allied health care workers spanning 6 continents suggested that preemptive palliative care consultation before ECMO initiation may be appropriate for patients in whom outcomes are especially uncertain, such as when ECMO is used as a bridge to healing or decision-making about transplant or hospice.³⁵  The rapid deterioration in condition of patients with COVID-19 during the initial phase of the pandemic often necessitated urgent actions in the face of uncertainty and made it challenging to conduct such meetings before ECMO initiation.

This study provides evidence for practical recommendations to support families of patients with COVID-19 who are receiving ECMO. In our experience, implementing a unified interdisciplinary process has helped streamline communication among all stakeholders through early and regularly scheduled meetings between the clinical team and family. This process includes additional pre-ECMO meetings between the primary and palliative care teams to ensure that there is agreement regarding the plan of care when a potential conflict or communication breakdown is detected. We observed that consistent messaging between team members, patients, and family members decreased confusion about the planned course of care both for the families and for those directly involved in the patients’ care.

In an intensive care study that used a combination of quantitative and qualitative methods to explore the determinants of family satisfaction, the themes that were most associated with higher satisfaction included increased consistency, clarity, and completeness of information; emotional support; and respect and compassion shown toward the family.³⁶  In our population, family members experienced a myriad of emotions, described by one as “stuck in a nightmare and waiting to wake up.” The initial family meetings involved the panic and despair of relatives recognizing the seriousness of the disease and learning of increasing death tolls reported daily in the news.³⁷  Family members felt devastated upon learning of the need for ECMO support, signaling severely critical illness and a high risk of death for their loved one. After an initial period of confusion, family members primarily experienced an ongoing fear of the unknown. Most individuals interviewed felt overwhelmed and were worried about their hospitalized loved one as well as other vulnerable family members isolating at home to avoid infection. A relative with multiple family members with COVID-19 described it as a situation they had “never been through” before (Table 2, quote 3A).

Young children of hospitalized patients also struggled to cope and process the situation (Table 2, quote 4D). The emotional stress these children endured caused additional stress for adult family members, although it simultaneously created motivation to “be strong” (Table 2, quote 4A). The palliative care team would often request the assistance of child support specialists in these situations.

Hope was prominent, and it came from increased disease-related knowledge, adequate medical resources and social support, and encouragement among family members. “Two days after cannulation for ECMO, a patient’s father shared that he and patient’s mother are ‘pretty much okay.’ They are waiting eagerly for ‘good news’” (Table 2, quote 1A). Another clinician documented that “a patient’s wife asked if he was ‘better yet’ and was told he is dying. She … continues to hope for a miracle” (Table 2, quote 1B). As family members’ knowledge of COVID-19 gradually increased, they came to better understand potential outcomes for their loved ones: “I understand he’s still very sick. He’s not doing well, he’s really bad. It’s difficult to receive bad news, but it’s in God’s hands” (Table 2, quote 2B).

Feelings of gratitude for the medical care and updates being provided were also abundant. Despite their heartbreak, family members found comfort in knowing their loved ones were attentively cared for. “Good and bad days; it’s tough, really heartbreaking … but we’re comforted that he is being cared for. We are grateful” (Table 2, quote 6C). They described feeling indebted (“I could never repay”) (Table 2, quote 6B) and reliant on this care (“I know we are in good hands”; Table 2, quote 6A).

Faith was also an important aspect of coping. Those who already had religious or spiritual belief found a deepening of their existing belief: “We’re trusting God. It’s in God’s hands and I am asking God for strength” (Table 2, quote 2C). Having spiritual faith helped grieving family members reduce the pain of negative emotions and feel more content in the face of mortality. Faith was a driver of hope (“Praise God, God is so good” [Table 2, quote 2D]) as well as a driver of acceptance (“If there is anything to do, do it. But if not, we understand” [Table 2, quote 2F]). Some family members used faith to reason with their loved one’s circumstance: “Hopefully this is a wake-up call” (Table 2, quote 2E). For others, faith was an obstacle to accepting the end of life: “We are Christian and we cannot make a decision to end her life” (Table 2, quote 2G). Several families asked for chaplains to pray with them over video calls and in subsequent separate meetings with the chaplain. Our findings are in line with an important body of research underscoring the role of spirituality in health care.^38-40 

Family members expressed grief related to being unable to physically be with their loved ones due to visitation restrictions. One patient’s wife cried because she couldn’t be with him in his final minutes as he “goes home to God” (Table 2, quote 5A). Sometimes this sorrow could be reduced through the use of telehealth video calls: “I see how her face lights up when she sees me [on Zoom]” (Table 2, quote 5B).

Caring for a dying patient receiving ECMO was particularly challenging not only for families but also for health care professionals.⁴¹  Having open and honest conversations with families during ECMO acknowledgment meetings helped manage expectations, alleviate uncertainty, and provide extra support for family members needing time to make difficult decisions when treatment could prevent neither the deterioration of health nor the impending death of an individual.

Our study’s limitations include its limited generalizability given that patients were from a small sample at a single institution. Also, data did not include feedback from clinicians or families on the effectiveness of this performance improvement strategy. As the COVID-19 pandemic continues to evolve, it is beneficial to establish guidelines for managing communication in an ECMO setting to improve the experience for patients, families, and the clinical teams.

Future directions for this research will include a study design incorporating a qualitative method. Focus group discussions will help determine whether the primary medical team benefits from the involvement of the palliative care team, specifically whether involvement of the palliative care team mitigates the primary care team’s experience of moral distress in cases of complex ECMO (eg, in patients who receive ECMO for prolonged durations).

The COVID-19 pandemic presents a unique challenge for patients, their families, and health care clinicians of all backgrounds. Our study shows that early and ongoing palliative care is useful in highlighting a range of experiences that are specifically related to COVID-19 and in achieving patient and family acknowledgment of the complexity, benefits, and limitations of ECMO support.

Safanah Siddiqui and Gabriel Lutz served as co–first authors and contributed equally to the work.