The following is an edited transcript of an MDAdvantage podcast with Steve Adubato and Dr. David Barile that was recorded on July 29, 2020. Dr. Barile is the Founder and Medical Director of the Goals of Care Coalition of New Jersey, a non-profit entity devoted to improving end-of-life care for residents of New Jersey. He is also Chief of the Section of Geriatric Medicine and Medical Director of the Acute Care for the Elderly (ACE) unit at the Penn Medicine Princeton Medical Center. Dr. Barile provided his perspective on and his personal experiences with the COVID-19 pandemic. Most importantly, he discussed the challenges associated with caring for and protecting the elderly, particularly those in nursing homes and long-term care facilities.
ADUBATO: Tell us about the Goals for Care Coalition of New Jersey. Why was it created?
DR. BARILE: The Goals for Care Coalition is essentially a partnership of leading healthcare providers, government agencies and some community organizations. The focus is to improve end-of-life care for residents of New Jersey. It was founded in response to several studies in the Dartmouth Atlas, which is an online publication that measures variations in healthcare utilization across the United States. The studies have shown for years that New Jersey is last on many measures in end-of-life care. If you are a senior in New Jersey and a Medicare beneficiary, you are expected to spend more days in the hospital, spend more days in the intensive care unit (ICU), see more subspecialists and spend more Medicare dollars than seniors in any other state. The Goals for Care Coalition was created in response to those statistics. We’ve done a lot of work over the years in education and advocacy and continue to do good work.
ADUBATO: How is the Goals for Care Coalition involved in advocating for New Jersey patients in nursing homes and long-term care facilities during the COVID-19 pandemic?
DR. BARILE: When the crisis hit New Jersey hard in April and May, we took a strong role in advocating for advanced care planning and Physician Orders for Life-Sustaining Treatment (POLST) form completion. Some of your listeners may not know what a POLST form is, but most are familiar with living wills. All adults should have a living will, which is an instructional statement in case you can’t speak with your doctors about your preferences for care. A POLST form is similar to a living will, but it is different in that it’s a single-page medical order sheet that a practitioner fills out rather than the patient, and it specifies exactly what to do in times of crisis. The POLST form is intended for people in skilled nursing facilities, people in nursing homes and people entering their final years of life.
The Goals for Care Coalition held daily webinars for one month, which were like town hall meetings for the public and for practitioners to learn about the importance of having your preferences stated on a POLST form. It was particularly important during this time of crisis when everyone was worried about healthcare rationing and utilization of ventilators. We wanted to make sure that those who were placed on ventilators wanted to be placed on ventilators, and those who wanted to avoid coming to the hospital had those goals aligned with their care preferences. We were a strong advocate of advanced care planning and continue to do this work.
ADUBATO: Another fascinating aspect of this time is people’s personal experiences with COVID-19. For me, a very close relative—my sister who talks about it publicly—had a very serious case of COVID-19 and was in the ICU for many days. I know it has influenced and impacted her view, not just of this pandemic and this virus but also as a leader in the work that she does every day and the way she interacts and talks with others. Dr. Barile, you contracted COVID-19. Tell us about that experience.
DR. BARILE: It’s had a huge impact on me. As a quick summary, I can say that I was like a lot of healthcare workers—I was very busy in March, April, May and June, and working every day. It was really hard work, and every day, I took care of very sick people. When I came home, my family made me strip down in the backyard before I came into the house, and then, I showered and took a 10-minute power nap. After that, I just enjoyed every moment with my family and counted my blessings.
Just when it began to slow down a bit, around Memorial Day weekend, I had my first day off in about three months. On Saturday, I was really tired and had some back pain; my wife came in from the garden and asked me to smell the rosemary she just picked. I took a whiff, and I smelled nothing. I got tested the next day and tested positive. I was tired and had some back pain for just 48 hours. Then I had a forced vacation in my backyard for 10 days of rest and relaxation. I was one of the lucky ones.
“It struck me that the only potential solution was to get help from the National Guard.”
ADUBATO: Early on, you were a big advocate of bringing the National Guard in to assist staff in the nursing homes and assisted living facilities in New Jersey most in need of help. Why?
DR. BARILE: I am Medical Director at Princeton Care Center and Nursing Facility in Princeton, and I’m pretty well connected with the nursing home industry across the state. During this crisis, I saw the very important need for hands-on care in these facilities. In most skilled nursing facilities, pre-COVID-19, all of the residents gathered in a common dining area three times a day. There might be one aide for a table who helped with food preparation and feeding. Then, in the early days of COVID, all the residents were secured alone in their rooms, and many of the staff and nurses’ aides were out sick. There just wasn’t a way to get practical help in there. It was a real crisis. We worked hard with the Department of Health to bring in healthcare volunteers, but it wasn’t enough. Then it struck me that the only potential solution was to get help from the National Guard. Unfortunately, they were not allowed to help feed the residents, but Guard members came in and helped a lot with custodial care and delivering meal trays to the rooms and so on. They provided a great service.
ADUBATO: There’s been a lot of talk about improvements in nursing homes related to reducing the likelihood of transmitting COVID-19. What have you seen in terms of how much progress we’ve made? What still needs to be done?
DR. BARILE: I think that we’ve made a lot of progress, and I applaud the work that all of our healthcare providers and government employees have been doing to reduce the spread and transmission. Still, there are things we need to fix to reduce transmission in the future. I think the biggest problem is that this virus can be transmitted in asymptomatic individuals, and many nurses and aides in nursing facilities have more than one job. They’re moving from one place to the next to the next because they’re trying to make a living, but they’re spreading the virus without knowing it. I think that’s really how it infiltrated the vulnerable elders in nursing homes so much. How do you fix that problem? You could talk about salaries, and it may be that moving forward, nursing home employees may not go to multiple sites. The big lesson for me came out in the Manatt report [Recommendations to Strengthen the Resilience of New Jersey’s Nursing Homes in the Wake of COVID-19] commissioned by the Governor to give feedback on what happened in New Jersey. One of the big challenges we faced was dealing with local departments of health. Just like on the national level, when the White House asked all of the states to secure their own personal protective equipment (PPE), their own ventilators and so on, you had states bidding against one another causing a fractured response. The same thing happened with nursing homes in New Jersey, where we have the local departments of health overseeing their own nursing facilities. Here in Princeton, we’ve got a department of health that’s actually quite good at overseeing a single nursing home and a single assisted living facility, and they were able to manage fine. But in other regions, the department of health oversees more than a dozen skilled nursing facilities, so it was really taxing for the local departments of health and caused a fragmented response. One of the main recommendations in the Manatt report is that we have a more unified response for things like PPE shortages and so on.
ADUBATO: Are there enough tests available in nursing homes today in New Jersey?
DR. BARILE: Testing has slowed down because more and more people are getting tested. But the more troublesome issue is the long turnaround time on the tests that interferes with contact tracing. When you get a COVID-19 test or when a test is administered in a nursing facility, the results may not come back for a few days, and in some cases, several weeks. How do you do accurate contact tracing when there’s such a long turnaround time? The case involving the Mayor of Atlanta is a good example. She went to a funeral with her family, and then everyone got tested. The test results didn’t come back until two weeks later after everyone started getting sick. Then they found that she, her husband and her son were infected with the virus. If they had had a quick turnaround time, they would have seen that just the child was positive, and they could have isolated him and protected themselves. So, turnaround time is critical for managing this pandemic.
ADUBATO: Clearly, our oldest residents are the most vulnerable to COVID-19. What advice do you have for the elderly and their families about how to prepare for the worst, and how to protect themselves against COVID-19?
DR. BARILE: It is a serious problem, and we do need to protect our elders—so I don’t want to dismiss their vulnerability, but I also don’t want to say that COVID-19 in the elderly is a death sentence. I’ve had plenty of frail elders survive COVID-19. It’s interesting that many of my nursing home patients did not have pulmonary symptoms. We all think, “Oh, it’s shortness of breath, and cough and respiratory issues.” But many have just a lack of appetite, dehydration, some confusion. You offer some IV fluids in the nursing homes and support them during this week or two of illness, and they improve and are then just fine.
To control the spread, we’ve got to maintain social distancing until we have access to a vaccine and have a better understanding of this virus, including how it is transmitted. Maintaining social distancing sadly means we can’t visit our elders in these facilities. Of course, that leads to another whole issue of social isolation for them and depression and all of the iatrogenic or hospital- and nursing home–acquired problems that occur when you have someone isolated in their room without any contact. It’s a challenge, and it will continue to be a challenge moving forward.