Palliative Care and Ethical Considerations in the COVID-19 ICU
By Elaine Chen, MD
Assistant Professor, Department of Internal Medicine, Division of Pulmonary and Critical Care Medicine, Section of Palliative Medicine, Rush University Medical Center, Chicago
Dr. Chen reports no financial relationships relevant to this field of study.
COVID-19 has given us all heavy hearts in 2020. At the time of this writing, there have been 16.5 million confirmed cases of COVID-19, with more than 5 million cases and 160,000 deaths in the United States alone.1 The pandemic has caused so much heartbreak, and nowhere more strongly than in the intensive care unit (ICU). The stories vary, but they share commonalities. ICUs all over the nation and much of the world have been working to care for people affected by COVID-19. The learning curve for caring for COVID-19 pneumonia and acute respiratory distress syndrome (ARDS) has been steep as we deal with critical illness in ways that are different than ever before. We are reading avidly, discussing constantly, spending hours on the phone with families, and grieving for loss.
Hospitals, physicians, and ICU teams have had to adapt rapidly to the clinical needs. In addition to respiratory, hemodynamic, and hematologic management, teams have had to grapple with challenging ethics and palliative care in the era of COVID-19.2 Although the volume of patients, demographics, comorbidities, and mortality vary from hospital to hospital, every healthcare provider in our nation has been affected by the effects of COVID-19.
Given the contagious nature of COVID-19 and the early uncertainty regarding mechanisms of spread, the Centers for Disease Control and Prevention (CDC) recommended limiting visitors to acute care hospitals.3 Hospitals quickly and aggressively instituted strict visitor restrictions as the disease escalated in March 2020. The visitor restrictions aimed to minimize the risk of exposure to COVID-19 for patients, healthcare providers, and potential visitors. This represented a huge paradigm shift in ICU care, where families are considered a key part of bedside care. Based on evidence citing benefit, the Society of Critical Care Medicine had strongly recommended engaging and empowering families in the care of their critically ill loved ones, and many ICUs had been working to liberalize visitor policies, invite families to rounds, and increase family involvement.4-6
Visitor restrictions have been nearly universal during the COVID-19 pandemic. Valley et al surveyed hospitals in Michigan about their restrictions.7 All responding hospitals had made significant changes to their visitation policies, with 98% of hospitals implementing “no visitor” policies except in specific circumstances. Hospitals varied in the circumstances leading to exceptions, the number of visitors allowed, as well as alternative communication methods offered. Although there is no doubt that visitor restrictions have decreased the transmission of COVID-19, they have led to many challenges.
Increased visitor restrictions have adversely affected almost all patient groups and their loved ones. When patients are awake and cognizant, they become lonely and isolated. When patients are confused or encephalopathic, they are more likely to become delirious. For those with limited cognitive ability, they lose the advocacy of a family member at the bedside. For the severely critically ill, families have a harder time understanding the gravity of the situation. For the dying patients, even with visitor exceptions, families have no way to properly say goodbye.
Without families at the bedside, communication has become a much more complex procedure. In our institution, residents have been the front lines for family communication. Each afternoon, after rounds were completed, the residents would spend hours on the telephone updating families. Video visits were sometimes made available for families, but this was a technology that was not available in all institutions.7 In the ICU, that usually meant they could see and speak to their loved one, but the patient often could not speak back.
Delivering bad news and end-of-life discussions have been particularly difficult with visitor restrictions. Normally, families can see the clinical changes firsthand: feel the escalation in concern by the clinical team as a patient declines or the palpable excitement when a patient improves. These changes have been more difficult to convey over the telephone. When a patient seemed to be more terminal, physicians would call a family member to tell them that their loved one was dying. We would invite them to the hospital to say goodbye, hoping desperately that the family would make it to the bedside before the patient died. Often, the family had neither seen nor spoken with the patient for weeks. When they arrived, the procedures were strict, and family members could only view their loved one across the window, sometimes speaking to them through a speaker system. At the time of this writing, our hospital has liberalized this policy, allowing two family members to enter the patient room to be at the patient’s side for 15 minutes — precious time for the patient and family, but increasing risk of transmission and anxiety for the healthcare staff. Sometimes, patients would die immediately after the family visited. Other times, the patients would linger for days, leading to an awkward waiting game. At least once, a patient had a miraculous improvement shortly after the “terminal” family visit.
As our comfort with severe hypoxemia and advanced respiratory support for COVID-19 patients grew, we learned to fear imminent decompensation less. When intubation was anticipated in patients who were awake and alert, we often would help the patients call their families prior to intubation. This would allow the medical team to explain what was coming, but more importantly, it would allow the patient and family to tell each other they loved them, and say goodbye.8 While we all hoped for the best, everyone acknowledged that it could be the last time that the family might get to talk to their loved one. The visitor restrictions are among the many pandemic factors that can make saying goodbye and grieving more difficult, and the pre-intubation phone call is one small act that perhaps could lessen the burden of grief.9
Because many of our patients are young and functional, they and their families desire every possible fighting chance for survival. For many who died, we maintained full life support to the very end, fighting very hard to salvage severe hypoxemia, hypercapnia, and hypotension for the tiniest hope of recovery. Because of this hope, and partly influenced by visitor restrictions, withdrawal of life support occurred less frequently than occurs with patients with terminal illness.
Families frequently request that we continue to do “everything” we possibly can to help their loved ones recover.10 Responding to “do everything” includes validating the family’s emotions and desires and understanding what “everything” entails. For these previously healthy and functional individuals, “everything” meant, nearly universally, offering every possible treatment that has any chance of prolonging life and leading to recovery. While “everything” often is interpreted to include cardiopulmonary resuscitation (CPR), patients on full ventilator and vasopressor support have minimal potential physiologic benefit from CPR. For most families, a straightforward statement that CPR will not be offered because it would have no benefit is sufficient to garner a statement of agreement known as informed assent.11
Informed assent should be discussed alongside the concept of the unilateral do not resuscitate (DNR), whereby a DNR order is written without explicit consent of the patient or surrogate decision maker. Laws vary from state to state, and the ethical acceptability of a unilateral DNR has been controversial.12,13 Given the increased risk of aerosolization and spread of infection during CPR, withholding CPR in physiologically futile cases would be even more appropriate than in pre-pandemic situations. Our hospital instituted a unilateral DNR policy allowing an attending physician to write a DNR order in these situations; however, if assent is given by the family, a traditional DNR order would be appropriate as well.
Withdrawal of life support, particularly compassionate extubation, was approached with caution given the risk of aerosolization during extubation.14 As hospitals were developing surge plans and triage protocols, there was widespread fear that compassionate extubation for the purposes of ventilator allocation would be required.15-17 Thankfully, our institution has not required deployment of such protocols. Compassionate extubation per patient and family wishes has occurred on occasion. Based on consensus decision, our institution initially developed a protocol for terminal removal of the ventilator, leaving the endotracheal tube in place with a filter attached to the opening. This was to decrease the aerosolization of viral particles and the risk of contracting the virus to clinicians caring for the patient during this time. However, as we gained comfort in caring for patients with COVID-19, we have returned to the usual practice of compassionate extubation with removal of the endotracheal tube.
Caring for the Caregivers
There is no doubt that every person who has worked in an ICU during COVID will suffer some degree of compassion fatigue and moral distress. Compassion fatigue, a type of burnout specific to caregivers, can manifest as signs and symptoms of post-traumatic stress disorder for caregivers helping those with life-threatening illnesses.18,19 Moral distress can be defined as painful feelings or psychological disequilibrium that occurs when constraints prevent one from following the course of action that one believes is correct.9,20 Some clinicians initially described a feeling of futility and fear: of wasting resources, medications, and personal protective equipment (PPE), and risking the lives of healthcare providers in caring for patients who had seemingly no chance of meaningful survival. Given the intensity of care coupled with isolation from friends and family because of shelter-in-place orders and fears of transmitting the virus, clinicians have many causes for emotional distress. Despite valiant efforts from institutional leadership and community groups to support frontline workers, morale occasionally suffered.
As patients die, we mourn and grieve with their families. We then put those feelings aside and go back to caring for our other patients.9 As patients recover, we celebrate. We look for evidence of discharges of the patients who passed through our units. We watch and read news reports of patients who stayed with us for weeks and months whom we thought had minimal chance of survival.21-24 We share stories with our colleagues. As we celebrate recoveries, discharges, decannulations (of tracheostomy or extracorporeal membrane oxygenation), and improving function, we regain compassion satisfaction.18 Sharing camaraderie with colleagues, detaching from work, and connecting with friends outside of medicine are among the myriad self-care methods that we all must take.19
The COVID-19 pandemic has created an ICU environment different from what we have ever seen in our lifetimes that has deep palliative care and ethical repercussions. Although visitor restrictions have led to patient isolation, communication challenges, and complicated grief, clinicians have spent hours connecting with families, being their eyes and ears at the bedside. Fear and apprehension among the healthcare team have been replaced by teamwork and confidence, but we must not neglect self-care. We will never forget how we sacrificed and came together in the time of COVID-19.
- COVID-19 Map. Johns Hopkins Coronavirus Resource Center.
- Griffin KM, Karas MG, Ivascu NS, Lief L. Hospital preparedness for COVID-19: A practical guide from a critical care perspective. Am J Respir Crit Care Med 2020;201:1337-1344.
- Centers for Disease Control and Prevention. Coronavirus Disease 2019 (COVID-19). Healthcare facilities: Managing operations during the COVID-19 pandemic. Updated June 28, 2020.
- Kleinpell RM. Visiting hours in the intensive care unit: More evidence that open visitation is beneficial. Crit Care Med 2008;36:334-335.
- McAdam JL, Puntillo KA. Open visitation policies and practices in US ICUs: Can we ever get there? Crit Care 2013;17:171.
- Society of Critical Care Medicine. Family engagement and empowerment.
- Valley TS, Schutz A, Nagle MT, et al. Changes to visitation policies and communication practices in Michigan intensive care units during the COVID-19 pandemic. Am J Respir Crit Care Med 2020. doi:10.1164/rccm.202005-1706LE. [Online ahead of print].
- Wilson ME. Saving a death when we cannot save a life in the intensive care unit. JAMA Intern Med 2018;178:751-752.
- Wallace CL, Wladkowski SP, Gibson A, White P. Grief during the COVID-19 pandemic: Considerations for palliative care providers. J Pain Symptom Manage 2020;60:e70-e76.
- Quill TE, Arnold R, Back AL. Discussing treatment preferences with patients who want “everything.” Ann Intern Med 2009;151:345.
- Curtis JR, Kross EK, Stapleton RD. The importance of addressing advance care planning and decisions about do-not-resuscitate orders during novel coronavirus 2019 (COVID-19). JAMA 2020;323:1771-1772.
- Klitzman RL. Legal immunity for physicians during the COVID-19 pandemic. Chest 2020. doi:10.1016/j.chest.2020.06.007
- Fins JJ. Resuscitating patient rights during the pandemic: COVID-19 and the risk of resurgent paternalism. Camb Q Healthc Ethics 2020 June 24;1-15. doi:10.1017/S0963180120000535. [Online ahead of print].
- Kangas-Dick AW, Swearingen B, Wan E, et al. Safe extubation during the COVID-19 pandemic. Respir Med 2020;170:106038.
- White DB, Lo B. A framework for rationing ventilators and critical care beds during the COVID-19 pandemic. JAMA 2020;323:1773.
- Maves RC, Downar J, Dichter JR, et al. Triage of scarce critical care resources in COVID-19. An implementation guide for regional allocation: An expert panel report of the Task Force for Mass Critical Care and the American College of Chest Physicians. Chest 2020;158:212-225.
- Truog RD, Mitchell C, Daley GQ. The toughest triage — Allocating ventilators in a pandemic. N Engl J Med 2020;382:1973-1975.
- Sacco TL, Ciurzynski SM, Harvey ME, Ingersoll GL. Compassion satisfaction and compassion fatigue among critical care nurses. Crit Care Nurse 2015;35:32-42.
- Alharbi J, Jackson D, Usher K. The potential for COVID-19 to contribute to compassion fatigue in critical care nurses. J Clin Nurs 2020;29:2762-2764.
- Elpern EH, Covert B, Kleinpell R. Moral distress of staff nurses in a medical intensive care unit. Am J Crit Care 2005;14:523-530.
- Holmes E. CTA supervisor returns home after more than 3 months battling COVID-19.
- ABC7 Chicago Digital Team. Chicago COVID-19 survivor recovering at home after 70 days in hospital.
- Czink K, Bair D. COVID-19 survivor story: Man thankful for Rush’s extraordinary care and innovative machine.
- Elwood P. Coronavirus survivor welcomed home with parade after spending weeks in medically-induced coma.
The COVID-19 pandemic has created an ICU environment different from what we have ever seen in our lifetimes that has deep palliative care and ethical repercussions.
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