In our COVID-19 pandemic series, J. Kevin Tucker, MD interviews three experts from Brigham and Women’s/Faulkner Hospital (BWFH) in Boston on the ethical issues surrounding management and allocation of scarce resources—Maxine Klenicki, Social Work Manager for Inpatient Medicine, Surgery, Addiction, and Emergency Department; Mary Thorndike, physician and hospitalist; and John Halporn, physician and palliative care consultant.
Mary, how are hospital chief medical officers and others in the planning process thinking about the allocation of scarce resources and how it differs from usual patient autonomy?
Thorndike: In a time of medical or public health crisis, we, as an institution, as a hospital or as a health system move to providing care under different standards and with different goals. We are relatively lucky here in Massachusetts that we have guidance from our Department of Public Health about crisis standards. This is not necessarily the case in every state.
Our normal guiding principle is to provide the best possible care for each individual patient. The ethical principle that guides us is patient autonomy. We try to advocate for and give patients the best options for the best care. We also place a high value on patients being able to choose among appropriate options for their care.
Under a crisis standard model our ethical guiding principle is more about providing the best possible care to a population as a whole. Doing the most good for the most people becomes our goal. That has very different implications for autonomy. Patients and individual physicians are not necessarily going to have the choices they're used to making. It’s challenging for all of us who do hospital patient care to wrap our minds around.
John, how do you define the crisis standard of care?
Halporn: Well, it's how to care for patients with limited resources in comparison to usual care. We live in a world of plenty. We usually don't worry about enough ICU hospital beds. Now, we're in a place where there will be more patients than beds, and there will be more patients with respiratory failure than there are ventilators. We have to make some decisions because if we don't, there would be chaos and conflict, and the wrong people will get the equipment. It could be up to chance or some other terrible mechanism by which people decide. We acknowledge we can't treat everyone who could be treated, and then we allocate resources to the people that we as a society think should get them.
Maxine, you're on the front lines in meeting with families who are distressed by loved ones being critically ill. How do we communicate this message about resource allocation to family members for whom this is a totally foreign concept?
Klenicki: It's a great question. Mary, John and I participated in a communication simulation. I think we all came away with different thoughts as this is so unusual. We are preparing ourselves to actually say to a patient and their family, ‘you are not likely to benefit from a particular resource, and we will not provide it.’
Distributive justice has always been an ethical principle that we've had the luxury of thinking about. We make a recommendation of care based on medical evidence, patient history and the predicted outcome. We then allow the patient and family to mull that information and work with us.
As our ICU begins to fill, a family member said to me, 'please don't take this away from my father because he's older and someone younger might need this.’ I think the public is becoming very aware of this through the media.
How we communicate this is going to be very difficult. Who is going to give the message, and how do we support the patient or family when there is the potential they could die? And how are we going to care for them? These are all questions we are working on.
When providers don't have long-term relationships with patients and must make split-second decisions about who gets intubated or who gets a ventilator, how is that communication taking place?
Halporn: A very difficult conversation has to happen with a patient who is quite sick. We have to acknowledge that we’re not sure about their survival in the next 24 hours and that one of the things that we could use will not be available to us.
What's been most helpful is this idea that ICU therapy and ventilation is a trial therapy. It's not guaranteed to treat people. It is a trial that we present to patients. If you get sicker, you may have a trial of ventilator therapy depending on how sick you are and how the hospital is situated in resources. I was initially quite concerned that the person holding the endotracheal tube would have to decide, which is not the case. A careful review process can be done in a short amount of time. We have to have confidence in the quality of the decision that's made, and we have to communicate that to the patient and family.
Maxine, I know that you and your colleagues are often called upon when a health care proxy has not been identified to try to find the person who can make decisions. Are you finding this still an issue or do most admitted patients have a health proxy identified?
Klenicki: I should only wish, but no, we are seeing many patients admitted without a health care proxy. We do try and identify who in the family can provide medical decisions should that need to happen. If the surge of patients builds and we move to crisis standards of care, we won't be necessarily searching for proxies the way we typically do. In that case, a team would be making recommendations and others would make the decision. We would then inform patients and families.
It will not be business as usual, but we are currently doing our best to find a health care proxy or a guardian. We may not be fortunate enough in the future.
I'd like to ask specifically about do-not-resuscitate (DNR) orders. Is there any ethical standard that allows hospitals to decide upon resuscitation status without patient or family input? How is that generally regarded in the ethics community?
Thorndike: Under a normal operating procedure, we have a well-defined pathway and process to examine questions of medical futility. There are rare situations where physicians might issue a do-not-resuscitate order, even if that was not the wish of the patient or their health care proxy. Usually, we work to build consensus. But very occasionally, even under ordinary circumstances, a doctor may issue a DNR without the consent of the patient or decision maker.
Under crisis standards of care, we would give an individual DNR order for patients for whom we're not able to offer critical care resources. It would not be our usual process of asking for patient or family consent. It would be the physician who issues that order.
Halporn: The DNR futility process has a lot of safeguards. There is typically a one-week waiting period. There is an option to transfer a patient to another hospital. In this crisis, the normal process is too cumbersome to use. It's an accepted ethical principle that you don't have to offer treatment that you don't think is effective. For example, someone who has a cardiac arrest because they're extremely acidotic from their renal failure will be unable to get dialysis. We've had some cases where we have not offered treatment as we believed it would not be of benefit.
I've read about aerosolization of the virus and the process of performing CPR and other resuscitative measures. Where in the hierarchy does the safety and protection of health care workers fall in setting priorities?
Thorndike: From an ethics point of view, there is a lot of debate about health care worker exposure and risk. In particular, there's debate about whether health care workers should be given priority in assignment of scarce resources. This has been heavily debated by very senior ethicists on both sides of this debate. You can argue that health care workers are being asked to put themselves at risk and, therefore, have priority if they become sick themselves.
On the other side, it becomes a slippery slope when we say that saving one life has more value than saving any life. The guidelines issued in our state do suggest some mild priority for health care workers, although it's not clearly spelled out.
I'd like to ask about allocation of resources and the potential life to be lived by someone who has a severe illness like COVID-19. If you take people who have certain disabilities, whose life expectancy, because of those disabilities, may be shorter anyway, are we undervaluing the lives of those individuals with disabilities when we think about the total number of years potentially left to live?
Thorndike: We've talked about this specific issue in trialing triage processes if needed in our hospital. Most kinds of disabilities don't affect people's priority scoring at all. It's not included in any of the measures of the score.
For people where a specific feature of their disability is a shortened lifespan, then it's possible that would impact their scoring. However, we are carefully making our triage process and incorporating scoring based on objective measures. There is the ability to override, change and adapt for certain circumstances where the standard scoring process does not provide the best assessment.
From an equity point of view, we are looking for ways to take individual circumstances into account. We have a plan for an appeals and oversight committee to review and protect vulnerable populations and disability rights. The intent is not having a disability count against people in the process. We're examining that in a number of levels.
The unfortunate reality in the United States is that we have tremendous disparities in health care by socioeconomic status and by race. One of the striking figures that I saw recently was that in particular metropolitan areas more than 70% of the deaths from COVID-19 were among African American patients when their numbers in the community are much lower. We know that African Americans and people of low socioeconomic status are more likely to have comorbidities that lead to poor outcomes with any catastrophic illness. How does one account for the disproportionate impact on those communities when thinking about how we apply these standards?
Halporn: I've been quite worried about this myself. In the hospital, I've observed a few people who have come in very sick and have been intubated within 20 minutes in the Emergency Department. The patients report that everyone else in their house is sick, and that they've been sick for over a week. I'm worried that those families don’t have access to a doctor. Therefore, when they recognize an emergency, it's probably too late. By hospitalizing them a week before, we could have changed the outcome. Now, that doesn't account for their preexisting conditions, but their access to care in an emergency still remains different.
I always learned that when giving bad news, it's best delivered in person. How has this pandemic changed the way you practice palliative care and having those serious illness conversations with the family members?
Halporn: Dramatically. We often wait a day or two to communicate until the family can come into the hospital. Now we have to communicate within the hour virtually.
We've used a number of communication methods. Luckily, the government has relaxed the privacy regulations so that we can use commercial Zoom or even FaceTime for patient communication. You have to acknowledge that it is difficult to communicate over the phone. That it's hard that we can't see each other and that you can’t see your loved one. That this is the best we have, and I ask you to trust us that we're telling you the truth. If you have questions about what we're seeing, we'll be your eyes and ears. We have to represent that the connection isn't as good, but it's all we got.
At our hospital, we have asked patients who are about to be intubated to record a video message to their family. And boy, that sounds just awful, but what a gift it is if that's all you can get. I've been quite impressed at the flexibility of these providers to allow this moment to happen because it will be so important later.
This article features an interview adapted from the Ethical and Psychosocial Issues in Management of COVID-19 webinar recorded on April 8, 2020.