Lessons Learned from Caring for Patients with COVID-19 at the End of Life

Introduction

The pandemic caused by the novel coronavirus SARS-CoV-2 has affected almost every aspect of daily life. The number of lives lost to COVID-19 is staggering: >140,000 here in the United States and >600,000 across the world. ¹ Each of these people experienced unique journeys with the disease, and unfortunately, most of these stories will never be told. As practicing palliative medicine clinicians in an urban academic medical center, we have been privileged to care for individuals suffering from COVID-19 as they interface with a strained health care system. We hope to shed some light on the varied applications of medical care and medical technologies as we describe the end of life (EOL) experiences of four patients and provide insights on lessons learned during this process.

Case 1: Extracorporeal Membrane Oxygenation

A woman in her 50s with a history of insulin-dependent diabetes and hypertension presented to the hospital reporting a 2-day history of fevers, chills, cough, dyspnea, and diarrhea. She was found to be positive for COVID-19 and was admitted to the general medical wards given need for supplemental oxygen through nasal cannula. On hospital day (HD) 1, a rapid response was called for worsening hypoxemia, and the patient was transferred to the medical intensive care unit (MICU) and intubated. She developed worsening respiratory failure despite proning, sedation, and neuromuscular blockade, prompting consideration of venovenous extracorporeal membrane oxygenation (VV-ECMO). She was transferred to the cardiovascular surgical ICU (CSICU) and cannulated for VV-ECMO on HD2. The palliative care (PC) team was consulted on HD2 for complex medical decision making and family support. Over the next 48 hours, the patient developed worsening shock and acute kidney injury, requiring initiation of continuous dialysis.

The PC social worker or chaplain spoke with the patient's family daily through teleconferencing platform to provide counseling, prayer, and support. The PC physician joined these meetings every two or three days to provide education regarding the clinical situation and to cultivate prognostic awareness. Over the course of these conversations, the patient's husband and two adult children shared that she was very active before the hospitalization, working as an analyst for the government and active in her church choir. They expressed a preference to continue life-sustaining medical technologies (LSMTs) given their religious background and belief that preservation of life was paramount. However, they agreed that if the patient's condition deteriorated to the point of cardiac arrest, foregoing cardiopulmonary resuscitation (CPR) would be consistent with the patient's treatment preferences.

The patient experienced several complications including gastrointestinal bleeding and septic shock due to ventilator-associated pneumonia. Given her worsening multiorgan system failure, the PC social worker and physician held a family meeting along with the CSICU attending describing the escalating risks and diminishing benefits of VV-ECMO therapy. After this meeting, which took place on HD10, the family assented to withdrawal of LSMT. The PC social worker and chaplain provided psychosocial and spiritual support to the family, who were able to speak to the patient through telephone and engage in prayer. An opportunity to visit was offered to the family, consistent with hospital policies for patients at the EOL, but was not logistically feasible.

Given the patient's need for high doses of parenteral sedation to maintain comfort and ongoing need for high ventilator settings, we made the decision in concert with the CSICU team to withdraw circulatory support only. The patient was premedicated with IV opioids and benzodiazepines, and ECMO flows and vasoactive medications were weaned off. The patient died within minutes with no apparent signs of distress.

Case 2: High-Flow Nasal Cannula

A retired college professor in his 70s with history of heart failure was admitted to the MICU for acute hypoxic respiratory failure secondary to COVID-19 infection, requiring nonrebreather mask. Before admission, he lived alone and was independent with most activities of daily living. On HD1 in the MICU, the patient was able to express his wish to forego intubation and CPR. He was amenable to a trial of noninvasive ventilation if it would allow him to return to his baseline state of health and functional status. His family was notified of his treatment preferences, which they articulated were consistent with their understanding of his wishes.

The patient was transitioned from nonrebreather mask to high-flow nasal cannula (HFNC), which was rapidly escalated to maximum settings of 60 L/min of flow and 100% fraction of inspired oxygen (FiO₂). The PC team was consulted on HD3. On our initial assessment, the patient was unable to report his symptoms or describe his goals of care due to altered mental status. He was noted to be tachypneic and was using accessory muscles to breathe. We started the patient on scheduled and as-needed parenteral opioids to treat air hunger.

Over the next two days, the patient experienced persistent hypoxemia, with oxygen saturation in the low 80s, which could not be improved with conservative measures. Concurrently, the patient became progressively less responsive and developed acute kidney injury. The PC physician and social worker held a family meeting through teleconference with his two sons along with the MICU nurse and resident. Given the patient's deteriorating mental status, we notified the family that the current therapies were not achieving their intended benefit, and the recommendation was made to transition toward EOL care. The family agreed that allowing natural death would be in line with the patient's goals of care. They were offered the option of requesting an exemption to be able to visit their father. The PC social worker explored the family's thoughts about coming to the hospital. They reflected that their father would not want them to risk their own health and the health of their family. A video call was offered to the family and they declined, as they preferred to remember him how he was before his illness.

After this meeting, the patient's regimen of intermittent parenteral morphine was changed to a hydromorphone infusion with option for nurse-administered bolus dosing. His work of breathing improved with these interventions. He was weaned off HFNC to simple nasal cannula, and died within hours.

Case 3: Medical Treatments for a Patient with Chronic Medical Conditions

A man in his 60s with history of stroke with residual deficits including aphasia and dysphagia requiring gastrostomy tube and COPD on home oxygen was transferred from a local nursing home with fever and dyspnea, secondary to COVID-19 infection. He had been living in a nursing home for the past three years since his stroke. The patient presented with a medical order for life-sustaining treatment form that indicated a preference to avoid CPR and intubation. He was admitted to the general medical ward for treatment of hypoxemia, requiring supplemental oxygen through nasal cannula. The code status was confirmed by the admitting hospitalist with the patient's son. On HD1, a rapid response was initiated for increased work of breathing and tachypnea, which improved with nasotracheal suctioning. On HD3, a second rapid response was called for increased work of breathing and hypoxemia, which were temporized with parenteral morphine and initiation of a nonrebreather mask at 15 L/min with 100% FiO₂.

The patient's son and daughter were permitted to visit the patient given his tenuous condition. After this visit, the family elected to redirect care toward comfort-focused care. They shared he had already been through a lot since his stroke and had previously made it clear he did not want aggressive medical interventions at EOL. The PC team was consulted at this time, on HD3. The PC physician and pharmacist recommended starting the patient on scheduled dosing of parenteral morphine. On HD4, the patient was noted to be severely dyspneic, with respiratory rate in the 40s, with nonrebreather in place. In response to his poorly controlled symptoms, we recommended an increase in the patient's parenteral opioid regimen. He died later that evening. Review of the vital signs documented in the hours before his death suggested inadequate relief of dyspnea, with respiratory rates in the 30–40s.

Case 4: Protracted Critical Illness

A man in his 30s with a recent diagnosis of systolic heart failure with ejection fraction of 20% presented to the emergency department with fever, dyspnea, and hypoxemia, requiring intubation. He was admitted to the cardiovascular ICU in a state of profound shock, requiring multiple vasoactive medications at high doses to maintain blood pressure. A COVID-19 test sent on admission returned positive on HD1. His wife and mother were contacted by the MICU team on multiple occasions over the next several hours as the patient appeared to be imminently dying. The PC team was consulted at this time for spiritual and psychosocial support. The family wished to continue medical therapies in the hopes of improvement, while agreeing to forego CPR in the event of cardiac arrest.

Over the next several days, the patient's vasopressor requirement gradually decreased. He was started on dialysis for acute kidney injury. He developed gastrointestinal bleeding, pancreatitis suspected secondary to propofol, and thrombocytopenia. The PC chaplain and social worker remained in touch with the family through phone providing supportive counseling and exploring their coping. His wife expressed her worries on how to explain to her young children that their father could die. She also worried about the financial strain this was playing on her and her inability to pay the mortgage. On HD15, the PC social worker learned that the patient's wife was hospitalized with COVID-19 infection and was no longer able to serve as the patient's surrogate decision maker. The PC social worker contacted the patient's mother to assess her willingness and ability to serve in this capacity.

On HD20, the patient developed rapidly worsening hypoxemia and shock, requiring escalation of ventilatory and vasopressor support. Large bilateral pneumothoraces were diagnosed on chest radiography, which were not improved by bedside interventions. In light of these new findings, the PC nurse practitioner and social worker held a family meeting using videoconferencing software to discuss the patient's prognosis. The patient's mother assented to withdraw LSMT and stated that she wished to notify the patient's wife and the extended family herself. As the patient was on maximal ventilator settings, we opted to stop vasoactive medications and wean the ventilator while supporting the patient medically with parenteral opioids and benzodiazepines. The patient died within minutes of these interventions, on HD21. The patient's mother and wife were not permitted to visit as they were household contacts before admission.

Discussion

The mentioned cases provide a glimpse into the spectrum of disease and medical therapies that patients experience with COVID-19 infection. Certainly, some patients already facing life-limiting conditions, and being cared for in hospice may choose not to present to the hospital, electing to have their care focused on alleviating symptoms in their homes. Others may not survive to the point of calling paramedics or reaching the hospital. For the patients who do reach the hospital, they may be offered a dizzying array of medications and medical technologies that are of uncertain benefit for this disease.

Patients who are critically ill with COVID-19 infection experience a relatively long course of illness, with prolonged need for mechanical ventilation.^2–4 This is one of the main factors driving the widespread concerns regarding shortages of essential medical equipment, personal protective equipment (PPE), and medical personnel. In cases such as the one already outlined of the patient with protracted critical illness, PC interdisciplinary teams can serve as a source of continuity for the family, mitigate anticipatory grief, and help families navigate decision making. In addition, PC teams should routinely establish a decision-making hierarchy, including a secondary or tertiary decision maker in the event that the primary decision maker falls ill and is unable to serve in this capacity.

The implementation of medical therapies of increasing complexity demands collaboration with specialist PC teams for assistance with discussions regarding complex medical decision making, symptom management, and planning and coordinating withdrawal of LSMT. ICU patients who are mechanically ventilated for severe acute respiratory distress syndrome require high pressures and FiO₂, as well as high doses of sedation to facilitate cooperation with the ventilator. Given the risk of uncontrolled symptoms after withdrawal of mechanical ventilation, the approach outlined in two of the cases mentioned favors maintaining the patient on mechanical ventilation while withdrawing vasoactive agents, dialysis, and other supports such as ECMO. A further modification would be to wean patient's FiO₂, set respiratory rate, or positive end-expiratory pressure. Maintaining the patient on mechanical ventilation also allows patients to remain on parenteral sedation to ensure symptoms are controlled at the EOL.

The anecdotal evidence from our group suggests that patients dying of COVID-19 are highly symptomatic, and in need of aggressive titration of opioids to control dyspnea at the EOL, which differs from recently published data.^5,6 In addition, given the sheer volume of patients with COVID-19 who require a high level of nursing care, patients are being cared for in clinical environments that may not be accustomed to EOL symptom management. Patients are “behind closed doors” in medical wards, without family at the bedside advocating for them, being cared for by nurses who have a high caseload. The burden of donning and doffing PPE numerous times a day adds to the stress and time required to care for each patient. PC teams may need to triage and check on the dying ward patients more frequently to assist nursing staff with EOL symptom management.

Patients with and without COVID-19 infection are tremendously affected by the visitor restrictions being implemented in hospitals, nursing homes, and hospices across the country. ⁷ These restrictions, although quite prudent from a public health standpoint, can impact the patient's experience at the EOL and the grieving process for families. ⁸ In addition, we have observed that being unable to see the day-to-day impacts of the disease and treatments on a person's experience may delay coping and acceptance of prognosis, which may, in turn, prolong decision making at EOL.

Lastly, visitor restrictions have forced PC teams and other health care providers to rapidly gain greater facility with teleconferencing platforms. ⁹ Using this technology to facilitate virtual goodbyes can be a way to connect families who are unable or not permitted to come to the hospital. It may also be helpful to acknowledge the conflict some families face with making the decision to come to the hospital versus a participating in a virtual goodbye. It is important to reassure families that it is okay to forgo an in-person visit as there can be a lot of worry about self-exposure. Having social workers and chaplains explore these concerns and what may remain unsaid at EOL can help facilitate the grieving process.

Since many more patients are dying in health care institutions rather than with hospice, family members may not receive the bereavement support they need as they navigate their grief. ⁸ PC teams may be the best equipped to screen for complicated grief and refer as appropriate to community resources and to hospices. ¹⁰

Conclusion

Caring for patients dying of COVID-19 infection has tested every facet of our health care system. Patients who are young and old, sick and healthy, are dying of this disease. As we await the emergence of new therapies that can combat this virus or a vaccine that can prevent infection, we must continue to ensure that all patients who are dying receive expert PC. To meet this challenge, PC teams must be agile, innovative, and open to new ideas and practice models.