As the COVID-19 pandemic was ravaging Connecticut, Newtown resident and palliative care physician Jo-Ann Maroto-Soltis reached out to The Newtown Bee with an idea of telling a comprehensive story about her career and her work in the hope of better educating the public about this misunderstood aspect of health care. This is the third and final installment of that series.

The COVID-19 virus came seemingly out of nowhere and has resulted in a serious strain and threat to our most vulnerable population, according to Newtown resident and palliative care physician Jo-Ann Maroto-Soltis. As a result, the population she and her palliative care colleagues serve has been thrust into a frightening whirlwind of unpredictable stress and fear.

“Due to the fact that the virus would be likely fatal for the majority of my patients, we have been using a combination of telemedicine visits when possible and face-to-face visits with personal protective equipment (PPE),” said Maroto-Soltis. “Our patients need to know now more than ever that we are here for them. Our healthcare system is at war with an enemy that has been a few steps ahead of us from the beginning, but we have been supported and equipped by Nuvance Health in a rapidly paced, ever-changing landscape since day one.”

Within one week of the pandemic hitting Connecticut, she said, countless Nuvance staffers were working 24/7 to do everything possible to address the many unknowns about the virus and how it could impact patients and her colleagues — from putting in place an ability to use telemedicine effectively to working on strategies to completely restructure hospital operations so that there would be adequate space/equipment and personnel to handle the emerging crisis.

“Having said that, we are still very much all sitting at the edges of our seats,” she said. “I am, again, most concerned about my patients becoming exposed by the people whom they depend on for care, including family members, home care nurses, and private aides. The assisted living and extended care facilities are the places that we are most concerned about. The virus has already been reported in virtually every care facility in our network.”

Out of the nearly 4,400 deaths the state registered to date, more than 3,100 — over 70 percent of those who succumbed to COVID-19 — resided in extended care facilities.

“It is our job, now more than ever, to make sure that the most vulnerable people in our communities have proper care,” she said. “By discussing goals of care and helping individuals complete advance directives, we aim to try and understand what is most important to people regarding quality of life, and to try and prepare as much as possible for acute changes in health.”

Walking ‘The Talk’

For many years, Maroto-Soltis said, healthcare providers were not accustomed to talking to their patients about advance care planning.

“You went to the doctor to have your physical and/or get medication when sick… not to talk about things like who would make decisions for you at the end of life, or what would be most important if faced with life-threatening illness. One of the nice things about palliative care is that you really get to know your patients (and their families) and it is our job to make sure that their wishes are protected,” she said. “If you don’t have the discussion, you don’t know, and assumptions are often made that are not in line with a person’s goals and values.

“For example, I recently was asked to see a patient who was in her late 80s after having a devastating stroke which compromised her ability to speak and communicate her wishes. She lived with her daughter, who was absolutely certain that her mother would not want aggressive treatments (such as feeding tube/ventilator support) in the setting of such a devastating illness,” Maroto-Soltis said. “However, the patient did not have an advance directive, so her wishes were never verified by her physician. The patient’s son had a very different opinion regarding what his mother would want and consequently, the patient ended up being treated with a feeding tube and tracheostomy only to die several months later from complications in a nursing home.”

“Our goal is to work with patients and families as a team so that these cases do not repeat themselves. People sometimes think that if you are not doing everything possible to keep someone alive, that you are neglecting them or providing sub-optimal medical care,” she said. “What I ask my patient is very simple: What is living to them? Most people agree that it is much more than just having a heartbeat. To paraphrase the answer of most of my patients, it would be that living ends when I can no longer interact with my loved ones in any meaningful way.

“When I first began my medical career almost 20 years ago, I thought that I would want to keep everyone alive on life support until everything else failed because you should never give up, so I thought…. I have realized over the years that truly caring for a patient is very different than curing them. Sometimes, no matter how much you do, you come to a point where you realize that the plan is much bigger than yours… it is very humbling but also very gratifying to realize that you are still part of the plan but are not the one calling the shots,” she continued.

“Losing control is probably the biggest issue for patients diagnosed with a serious illness,” Maroto-Soltis said. “Likewise, in my career, I have come to realize that when patients do not respond or improve with certain treatment recommendations, instead of feeling frustration and the desire to refer patients, that is actually when they need you the most. There are always going to be roadblocks and hurdles to overcome when it comes to most serious diseases. Having patients know that you are in their corner and ready to go to plan B, C, and D when needed is extremely valuable. If we eventually come to a point when it is time to talk about dying, and what that means for the patient, then we need to be there to have that discussion.”

A Whole New Monster

Maroto-Soltis said the COVID-19 pandemic has thrust a whole new monster into the mix for our most of her vulnerable patients.

“This has been an extremely frightening time,” she reflected. “As soon as we had our first patient from Wilton hospitalized in the ICU at Danbury Hospital, we knew that it would not be long before the virus began to invade our assisted living and extended care facilities. During the third week of March, we had several patients from Ridgefield come in, only to die within 48 hours of developing respiratory symptoms from the virus. At this point in time, we reached out to regional medical directors to collaborate and discuss ways to mitigate the spread as well as to make sure that those who were not candidates for being put on a ventilator received appropriate end-of-life care.”

What concerned Maroto-Soltis most was having patients suffer from respiratory failure without proper medications or support.

“This virus was teaching us that if you were frail or elderly with underlying medical conditions such as COPD/chronic CHF, the odds of beating the disease were fairly low,” she said. “It was apparent that everyone with severe chronic disease, especially those in care facilities, needed to have updated care plans taking into account what could happen if the disease was contracted. The other critical piece was collaborating with regional hospice care providers in this area to make sure that those who needed end of life care could receive it in a safe and timely manner.”

Given that time has been of the essence with limitations of staff and PPE, Maroto-Soltis and her team needed to quickly reach out to community health care workers to educate them about having these important discussions.

“As palliative care clinicians, we have the advantage of really getting to know our patients very well. Having updated goals of care discussions is something that is very natural for us since we generally do this on a regular basis. However, for those individuals who might not have a provider who knows them intimately, it can be very difficult,” she said. “These discussions can sometimes be very time consuming because patients often need guidance, which comes from understanding where they have come from and what is most important to them. Given the urgency and uncertainty of what the future holds, however, we have had no choice but to do the best that we can with the resources available.

“One of the positive changes in our current medical system has been that we have quickly learned that in order to survive this pandemic, we need to collaborate and use resources efficiently,” Maroto-Soltis said. “There is definitely a role for telemed for many of our patients; however, if you are ill enough to be in an extended care facility or do not have family who can assist you with utilizing a device like many of our patients, it can be very difficult.”

The Nuvance Health Palliative Care team continues to see patients both in the hospital and community by utilizing the same PPE that all frontline health care professionals depend on, she noted.

“The feeling of being in a war could not be more accurate… against an unknown enemy with no set boundaries,” Maroto-Soltis said. “As we begin to move forward with a glimmer of hope on the horizon, there continue to be days when the pain of loss around us seems unconscionable. One of the positive silver linings for me has been that it has prompted time for reflection on what is most important in life. Much like a serious illness, the COVID-19 virus has caused us to stop and think about what happens when our health, livelihood, and day-to-day life is threatened.”

Reflection And Gratitude

Prior to the pandemic, as a busy working mother of four and wife of an also-busy emergency physician, Maroto-Soltis said she usually found herself consumed with the day-to-day activities of work and home.

“Concerns about what school my children might go to in the future, or if they would be successful at a sport, or how I would juggle their busy schedule of activities seemed fairly important to me,” said Maroto-Soltis. “Now, I often find myself reflecting on the good days of my childhood, before my father died, when my world centered around the simplicity of life with focus on family and spending time with a few close friends.

“During quiet reflection, I find myself focusing on gratitude like never before. I am eternally grateful to have been brought into this world by two parents who taught me about the value of love, faith, and dedication. It was through their imprint on me that I learned to believe in myself,” she said. “I am grateful for having an older sister with Down syndrome, who only saw the good in people. I am truly grateful for my family and the community of individuals around me like never before.”

Having had the privilege of being a Newtown resident for the last 14 years, Maroto-Soltis said she and her husband have been exceedingly touched by the outpouring of support from friends, neighbors, and the community.

Since they are both on the front lines, several months ago at the beginning of the crisis, local friends under the guidance of Ryann Quinn and neighbor Brandy Jacobs arranged to have a parade of cars drive by their home with signs and expressions of gratitude.

“It brought both of us to tears,” said Maroto-Soltis. “It was like receiving a warm hug when we really needed one — and we so deeply appreciated it. So as we continue to march through days filled with some degree of uncertainty for the future — as we look toward a new normal — hopefully we can and will hold onto the moments of care and love that helped us through.

“From the 12/14 tragedy, which occurred on our twin son’s first birthday, to now, we have always felt a tremendous amount of love and support from this beautiful town,” Maroto-Soltis added. “It is so heartwarming to see how so many people are reaching out to help those families affected by the virus. There is a really strong foundation here, and we are so fortunate to be a part of it.”

For anyone interested in considering palliative care for themselves or for a loved one, contact the palliative care team at Danbury Hospital by calling 203-739-6662 — or visit danburyhospital.org/departments/palliative-care.

This series was edited by Newtown Bee Associate and Health Page Editor John Voket