A Palliative Caregiver's Story, Part 2: 'This Is Time Well Spent'
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 second installment of that series.
The age range of people receiving support from Dr Jo-Ann Maroto-Soltis when she submitted this series June 30 ranged from 40 to 107 — although she also has cared for several younger individuals, as well as those with devastating neurological diseases such as Devic’s disease, ALS, and infectious encephalopathy whose lives, she said, “have gone from perfectly normal to one of complete dependency.
“These are the cases that are often the most difficult for me personally,” Dr Maroto-Soltis said. “The suffering that accompanies such a rapid decline in functioning is so heartbreaking to observe, and unfortunately, effective treatments are limited.”
As an internist, Dr Maroto-Soltis said she prides herself on becoming as much of an “expert” for her patient’s sake as possible.
“I love medicine, and thanks to the digital age, information is now at our fingertips like never before. However, there is nothing like being able to engage with other clinicians and specialists about individual patients,” she said. “Due to the fact that it is often so laborious for my patients to be transported to medical offices, my goal is to be their advocate and liaison so that they can still receive expert advice, but without having to leave their homes.
“While I am sitting at the bedside with one of my patients I can call their neurologist or cardiologist and relay their symptoms and concerns in a meaningful way so that delays in treatment can be avoided,” she added. “This is time well spent.”
“Being on the other side, I often see how many hurdles people have to jump over, often just to get a message to their physicians. My job is to pick up the phone and try and get to the point as quickly as possible,” Dr Maroto-Soltis said. “Fortunately, after having worked for years in our health care system, I have formed positive relationships with most of our clinicians and I rely on those relationships to assist in the care of my patients.
“One of my first patients is a young man by the name of Jamie Erwin who lives in a private residence in Redding. Jamie suffers from a rare neurologic condition by the name of Devic’s disease. Jamie was living [elsewhere] after college working a full-time job when he began to develop neurologic symptoms, which were initially thought to be secondary to MS. Unfortunately, after years of progressing symptoms, he was eventually diagnosed with a condition known as neuromyelitis optica (or Devic’s disease) which is much more aggressive.”
Coming Off Hospice
Since 2011, Dr Maroto-Soltis said, Erwin has been paralyzed from the neck down and has suffered from chronic pain, spasticity, and recurrent pulmonary infections which often compromise his breathing.
“Jamie is dependent on his parents and caregivers for everything. Simply being moved from his hospital bed to the commode usually requires a significant amount of energy and often discomfort in the process,” she said. “Jamie actually opted to transition to hospice care before I met him in 2016 because his illness was progressing and his physicians really felt that it was only a matter of short time before he would pass away.”
While on hospice, Erwin and his parents realized that even though he was experiencing a great deal of suffering, he was not ready to die yet and they wanted to try and care for him at home again.
“So our palliative care at home program was able to offer Jamie a bridge to return home with the care that he needed,” Dr Maroto-Soltis said. “For Jamie, even though he has many really challenging days, he can still experience joy in many ways such as by watching his favorite shows, enjoying good food, and interacting with friends and loved ones via Facetime. Over the last few years, we have had many heartbreaking discussions about what it means to live with a disease that will likely take his life.
“Maybe even worse for Jamie, the disease is usually associated with the loss of vision, which for Jamie would be devastating. We are always in the process of trying to help him by researching new treatments which may halt the progression of disease,” she continued. “Given how rare the disease is, there are few neurologists in this area who feel comfortable recommending treatments.”
Hopefully, by networking with specialists from some of the larger centers like Johns Hopkins and the Brigham and Women’s Hospital, Dr Maroto-Soltis said she and her contacts can come up with a treatment plan that would provide Erwin some hope.
“Unfortunately, the COVID-19 pandemic had put a halt on any major plans for Jamie over the last several months,” she said. “Our focus has been on doing everything possible to help make sure that Jamie does not contract this virus, which would likely be fatal.”
Another area of care in the community near and dear to Dr Maroto-Soltis is dementia care.
“Touched personally with having had several family members suffer from dementia, including a sister who passed away last year from complications related to Down syndrome, I know personally how devastating this disease can be,” she said. “As many people know, the incidence of people living with advanced dementia is rapidly growing. This is, without a doubt, an area of medicine that deserves special attention.”
A Team Approach
Through the Nuvance Health home program, Dr Maroto-Soltis said her team has been caring for people with dementia in private homes, assisted living environments, and extended care facilities throughout the area.
“Dementia not only deprives a person of their ability to function, but also often strips them of their individual personhood. The strain of dementia on loved ones and caregivers is also a serious issue that requires proper support by all members of the care team,” she acknowledged. “Dementia care is a perfect example of how important a team approach is to caring for affected patients and their families. The day to day stresses and needs of the patient/family are constantly changing and it is our job to support and care for them as the disease progresses.
There are many different types of dementia and Dr Maroto-Soltis said it is very important to recognize and diagnose the type of dementia an individual has before just labeling them and making generalizations.
“I think that most people are familiar with Alzheimer’s type dementia, which is the most common. However, there are several other types, such as vascular and Lewy body dementia, which may behave very differently,” she said. “It is also important to recognize which type of dementia a person has because the treatments and medications used to treat certain symptoms can be very different.
“Given that the prevalence of dementia is increasing so rapidly, my hope is that our home program can serve as a collaborative participant in a network of expert researchers, neurologists, therapists, etc, who can together find ways to improve care for our dementia patients,” Dr Maroto-Soltis said. “It is so challenging and sometimes even traumatic for patients with dementia to seek the care that they need by going to appointments outside of their primary residences.”
There is also a great deal of variation in medications that are used to treat symptoms associated with dementia such as agitation and sundowning.
“I really believe that within the next five years, we will finally witness some breakthroughs regarding treatment options for dementia, she said. “Until then, our goal should be to network the latest information/resources so that each patient can receive an individualized plan of care that is best suited for them.”
A Win-Win Scenario
The case for greater palliative care resources is being made by organizations like the Center to Advance Palliative Care (CAPC) — part of the nonprofit Icahn School of Medicine at Mount Sinai.
Palliative care has demonstrated that it can achieve the win-win health care scenario: higher quality care at lower cost, according to the CAPC.
Since palliative care helps ensure that resources are matched to patient and family needs and priorities, it results in substantially lower hospital costs, providing patients, hospitals, the health care system, and clinicians with an effective solution to a growing challenge. By improving care and preventing crises for those at highest risk, palliative care reduces the need for burdensome and costly acute care services.
Palliative care teams working in hospitals improve patient and family satisfaction with care; reduce 30-day readmission rates and ICU utilization; and can save from 9 to 25 percent of costs for each inpatient stay through a mixture of shorter length of stay and reduced cost per day.
In addition, palliative care teams working in home-based programs have been shown to save ACOs, health plans, and health systems as much as $12,000 per person enrolled while reducing emergency department visits, hospital admissions, hospital readmissions, and hospital length of stay.
The CAPC says that health plans that train case managers in skills specific to this patient population and who provide expanded access to specialty palliative care have seen similar savings while maintaining high rates of satisfaction.
In the next installment of this series, Newtown Bee readers will get a glimpse of how Dr Maroto-Soltis and her team are grappling with the coronavirus pandemic. 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 CLICK HERE
This series was edited by Associate Editor and Health Page Editor John Voket