Who Decides? Medical Ethics in the Time of COVID-19

Life-and-death medical decisions can be agonizingly difficult, as this virtual roundtable revealed. Guidelines must start with patients and their families, doctors and ethicists

As one of the epicenters of America’s coronavirus pandemic, New Jersey has faced historic strain on its health care system. And that strain sometimes raised disturbing questions about who would receive care if medical supplies, hospital beds, ventilators and even nurses and doctors were overwhelmed.

To explore those implicit challenges and the state’s responses, NJ Spotlight earlier this month hosted a virtual roundtable on medical ethics. One of the key issues: the so-called triage guidelines the Department of Health developed with help from several roundtable panelists, as well as other stakeholders in New Jersey’s health care and legal communities.

The speakers — New Jersey Superior Court Judge Paul W. Armstrong (also a senior policy fellow at Rutgers’ Edward J. Bloustein School of Planning and Public Policy); Nancy Berlinger, research scholar, The Hastings Center; Dr. Adam Jarrett, Holy Name Medical Center executive vice president and chief medical officer; and Elizabeth G. Litten, chief privacy and HIPAA compliance officer, Fox Rotshchild — discussed the rich history of medical ethics in the Garden State, lessons from other public health emergencies and how health care facilities and government leaders addressed coronavirus-related shortages.

And while the heaviest surge of COVID-19 patients may now be behind us, these experts agreed that the impact of the pandemic and the need for families and public officials to plan ahead are far from over.

Excerpts from the discussion follow:

Dr. Adam Jarrett, Holy Name Medical Center, on Holy Name’s preparation and experience: “We were very fortunate. We had done a pretty good job being prepared. So as it related to PPE (personal protection equipment) and ventilators, we were able to constantly stay ahead of the curve and were never really in that situation where we had to think about rationing those types of care. We did, very early in the pandemic, bring our ethics committee together. Our ethics committee consists of health care workers, nurses, lay members of the public, clergy, and we meet regularly outside of the pandemic to discuss ethical issues that arise. But during the pandemic, we were meeting at least once a week and we were preparing for what could have been some very difficult decisions…”

On scarce health care resources: “And there are other resources that we don’t always necessarily think about in these situations. I think actually the most difficult one was people. So critical care — nursing, critical-care doctors, infectious disease doctors. We had to — as an organization and working with our ethics committee — make sure that those resources were being allocated so all patients were getting the appropriate care that they needed.

“And we as a hospital have an ICU that typically has anywhere from eight to 10 patients on ventilators … We had 45 patients on ventilators during the peak of the pandemic. We had 245 patients in the hospital just with coronavirus. So it was a constant issue to be sure that the resources were being allocated appropriately based on patient need.

“I think we actually did a very good job. And the ethics committee played a large part in that … we had developed a scale in terms of measuring acuity and chronicity of illness in individual patients. And we worked very hard with our palliative care team to be sure that we were having good conversations with patients and families, things that really, in an ideal situation, are happening on a day-to-day basis, even before the pandemic …

“But I am concerned about the future … it is the reality that we are constantly making decisions as a health care system in this country how to allocate those scarce resources, such as hearts and livers. In this situation, it was much more tangible for the average person because coronavirus was affecting everyone. And the concept of not getting a ventilator, if you need one, was very real. But we do have a history in this country of having to deal with scarce resources. It just doesn’t typically affect every American.”

On the need to plan ahead: “So I think this starts with the honest conversation that we all have to have with our loved ones and our family and our physicians, that we’re all gonna die. Right? It starts with that conversation. And it’s a difficult conversation, but it’s the reality of life, right? Life is incredibly special. And I believe one of the things that makes it special is that it is not forever.

“We’re working really hard on that here at Holy Name, making sure that every patient has an advanced directive and a health-care proxy … But for patients and families and doctors, talking about the reality of advanced directives and health-care proxies will go a long way in making sure that we don’t have a situation where we’re choosing between two patients and one ventilator, because most patients don’t want to die on ventilators.”

(The state Department of Health has resources on advanced directives and other end-of-life planning tools on its website.]

Nancy Berlinger, The Hastings Center, on similarities to the AIDS crisis: “I started my career in New Jersey where I was born. I was raised in Bergen County and my first job was working in Hyacinth AIDS Foundation … And this was long before there was effective treatment for HIV/AIDS. And the two things that really came up from that experience of pandemic in New Jersey — and New Jersey was one of the worst-hit states; it was consistently number five after New York, California, Texas and Florida — was that you were constantly thinking about the reality of human suffering. This was at that time an acute disease, chronic illness and a terminal illness all at once … And at the same token, you were thinking about equity, which is a big term that has come up recently. What are the ways that we should be fair to people during crisis? How should we distribute the risks and the benefits of health care fairly, so that we don’t privilege groups who already have more access to health-related services and goods and further disadvantage those who have less privilege already. So we certainly saw that during HIV/AIDS all the time in New Jersey. And we’re seeing it again.”

On why these guidelines still matter: “Another thing that I think we want to mention here is that in the health-care setting, we’ve been so much focused on hospitals because this is an acute illness, a respiratory illness. We think about the emergency room, the first of the emergency responders, the ambulance workers, all of those things that signal ‘emergency’ to us. We also are thinking about this as a long-term challenge. We’re sort of moving into the chronic phase of COVID-19. We are predicting that there will be other escalations of this disease.”

On the three key elements of triage guidelines: “One is the public-health duty to plan. You cannot wait for a crisis and then react to it. You must plan. You have to plan for the worst as you’re hoping for the best. And you have to keep changing to adjust to real-life circumstances.

“The second was the duty to safeguard. This was actually influenced by some of the earlier pandemic flu work that involved colleagues in Canada who had been through the SARS pandemic. We didn’t know much about COVID-19 yet, but we knew that there were going to be populations who are going to be more at risk of serious life-threatening illness than others. And so you had to keep an eye on those populations. And you also had to safeguard the health-care workforce. You had to think about the protection of workers through gear, through adequate staff support.

“And the third was that you had to prepare for things like the possibility of ventilator triage, of having to limit other critical-care resources or a dramatic expansion in your ICU capacity that might lead to change staffing ratios. This is something the nurses in our expert panel mentioned, that it was you’re used to a one-to-one ratio of nurse to patient. And suddenly you have to care for more people and you’re trying to figure out how you can keep them safe and how you can manage to get through everything you need to do. So so we tried to represent all of that…”

New Jersey Superior Court Judge Paul W. Armstrong, on creating the state guidelines and lessons from history: “Well, the open door to these guidelines (was) the fundamental notions of ethical and moral principles, and that these (medical) institutions remain open to everyone. And the important thing was that in crafting these guidelines, we wanted to make sure that we didn’t impede clinical decision-making at the bedside. We could give you general notions of what would be appropriate, but we did not want to usurp the prerogative of the physician, patient and family in making decisions.

“You’re looking at it in essentially two ways. You’re trying to craft for a situation that we haven’t seen since 1916. How do we take and craft a fair, equitable, just, moral program that would allow everyone to receive these kinds of treatments? Note, the entire world was caught off balance in this. (But) we didn’t learn the lesson of 1916. So we’re now we’re in the position where we have to craft these equitable notions.

“We’re talking about people of color who are very concerned about how these would be applied to them. And we’re talking about my (age) group, the members of the AARP, who are also stakeholders who were involved in drafting, promulgating these guidelines as well. The governor (and) the health commissioner have hammered virtually every day (in press briefings) from 1 p.m. till sometimes 3 o’clock, pointing out that everyone has access, no matter what socioeconomic background we come from. … But we haven’t reached that situation where we had to apply those circumstances.”

Elizabeth G. Litten, Fox Rotshchild, on protecting clinicians: “I think that  the main concern was, let’s make sure we know what to do so that we’re not placing a clinician in the untenable position of having to make a decision — like who gets a ventilator — without a system and a well-thought-through policy behind that clinician. So the idea is really kind of setting things up ahead of time, practicing it. And thankfully, I don’t think we’ve had to (ration care). But the goal is to think through this in a time where you’re taking into account the, you know, clinician’s expertise, the ethicist’s concerns, the patient’s viewpoint, the family’s viewpoint. And you have a chance to map through different scenarios and think about what are the implications and also how to avoid the unintended consequences. So if you include a certain factor in your decision-making process, how might this play out as you’re in in real life under different scenarios? Are there some unintended consequences? And what can we do to help prevent those from occurring?”