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How To Be A Health Advocate: Katie Kissal
A health advocate is “a family member, friend, trusted coworker or hired professional who can ask questions, write down information and speak up for you so you can better understand your illness and get the care and resources."* My phone buzzed in the early morning hours of July 30, 2020, as I started my daily ritual workout in the basement gym (or refuge) we created during the pandemic. While the caller ID revealed the healthcare facility where my father was a patient, I wasn’t immediately panicked. I had grown used to calls at all hours by this point. Yet the minute I was asked for by name, I knew he was gone, closing another devastating chapter of our family’s pandemic story. For the past month, my father had been in a long-term acute care facility (LTACH), supposedly recovering from the coronavirus (COVID-19). However, it was truly an unknown status as his last few weeks were spent back on a ventilator. Before that, he endured 87 days of hospitalization (mostly in the intensive care unit) with several stints on the ventilator, dialysis, delirium and more. Prior to that, he was quarantined in a rehabilitation center, where he was diagnosed with COVID-19. He passed away 80 days after my mom, his wife of 49 years, also died of the same virus.
MY FAMILY
My sisters, Jenny and Maureen, and I were raised in Northern Virginia and we stayed in the area after college. To say we were close with our parents is an understatement. Daily phone calls, Sunday night dinners, birthdays, holidays, vacations, and weekends at their pool; we were fixtures in each other’s lives. My three daughters had developed a priceless closeness with their grandparents. My parents helped me for years while I worked. My dad carpooled from school pickup to ballet while my mom popped into our house to do loads of laundry and start dinner. Much to the chagrin of my contractor, my dad stopped over frequently to “project manage” our home renovation. Being involved in our lives was very much part of their love language and hobby. I look back on it with immeasurable sadness and love.
ADVOCATE 101
I worked in healthcare for 16 of the more than 20 years I've spent as a public relations professional. In my career, I developed messages that supported lobbying efforts on behalf of our healthcare profession membership in Congress, regulatory agencies and commercial payers. “Advocate” was also a term in our PR arsenal to educate and encourage consumers to proactively act on their own behalf or as caregivers. I oversaw our efforts of creating consumer education content, which included writing, editing and publishing simplified information about complex health conditions via tips pages, health guides, videos and podcasts. In pre-pandemic times, the role of being an advocate didn’t really resonate with me on a
personal level. My three young children were healthy. My parents were relatively healthy and able to manage their own health issues. However, in the fall of 2019, a sequence of events rapidly shifted my perception and experience from passive to seasoned and diligent and changed my life as I knew it.
AN UNPRECEDENTED CHAIN OF EVENTS
In late September of 2019, my mom suffered a fall at my house and broke her hip. She was the consummate family “caregiver” of our family and as her kids got older, she shifted that focus to ensure my dad successfully managed his diabetes. After her fall, my dad’s role as a devoted caregiver to her, his high-school sweetheart, was no less. Jenny, Maureen and I supported them as much as possible. We scheduled and attended appointments, wrote notes, discussed prescriptions and diets to boost recovery, oversaw home exercises and assisted with housework and errands. This teamwork covered bases on many fronts. In hindsight, it was good preparation and foreshadowing of what was to come in 2020.
Over the following months, my mom’s progress ebbed and flowed. Her weakened body caused setbacks. Because she was sometimes a frustrated and stubborn patient, it was important we engaged with her healthcare professionals to convey accurate information about her appetite, exercises, the environment at home and more. Eventually, to help with her progress, she was admitted to an inpatient rehabilitation center a quarter of a mile from her house. It seemed ideal because she was safe and could progress with observation and we could all visit regularly, especially my dad. But there was no time to breathe a sigh of relief. In late February of 2020, the exhausting and intense role of caregiver had taken a toll on my dad’s health, specifically his diabetic foot issues. I accompanied him to a regularlyscheduled check-in, knowing he wasn’t feeling well and was concerned about a foot ulcer. Upon arrival, he was immediately diagnosed with sepsis and admitted for a life-saving toe amputation. A complex and lengthy recovery was needed to help salvage healthy tissue and as much of the foot as possible. Dad was discharged from the hospital and admitted to the same rehabilitation facility and became my mom’s roommate, which seemed like a stroke of good fortune at the time. We were elated that they were reunited after so much time apart. Because we had begun to experience inconsistent care and communication issues with the staff, it was also a relief to have an extra set of eyes and ears on location. However, we were also overwhelmed with two unique and specific care requirements for our parents. Engaging daily about their care, progress, goals, insurance coverage and managing their house and estate became full-time jobs.
THE ISOLATING REALITY OF COVID-19
New and unprecedented challenges would reveal themselves. In March of 2020, nursing and rehabilitation facilities, including my parents' center, were locked down to non-staff to prevent the spread of COVID-19. Any concerns we had about their care, progress and communication with their healthcare providers became amplified. And the fear was not just being felt among the patients and their families; it was palpable with the staff as well.
A silver lining during this phase of the pandemic was my parents' ground floor unit. It allowed us to bring my girls to their window and visit their grandparents. Patients on higher floors were not so fortunate. At the beginning of April, my dad was the first patient to test positive for COVID-19. A plan to discharge and admit him to an area hospital started immediately. Given his foot wound issues, the frantic havoc the virus was causing in healthcare systems and our lack of access, I knew we could no longer be passive advocates. A higher level of involvement, insistence, reinforcement and action was going to be needed to ensure we did everything we could for them.
I started with an awkward text to an old friend from high school named Joseph Sakran. We used to call him "Joe" or sometimes "Joey." During our senior year of high school, he was nearly killed after being shot in the throat. The near-death experience inspired him to become a trauma surgeon and surgical critical care intensivist. Joe, now known to many as Dr. Sakran, is a prominent voice in the care of injured patients and a nationallyrecognized advocate for gun safety working at the nexus of medicine, public health and public policy. His expertise has been highlighted in both national and international media outlets such as BBC, CNN, Al Jazeera, NBC, TIME magazine and others. Not only did he respond to my text, but he did so immediately. It’s almost as if I flipped on a light switch. He became a constant source of calm expertise that navigated me through the most difficult experience of my adult life – having my
parents hospitalized with COVID-19 in complete isolation. Joe’s experience having worked in my father’s specific ICU, expert knowledge of ICU treatments and insightful thoughts of the treatment of COVID-19 was integral to my father’s three-month COVID-19 hospitalization. His willingness to be regularly available to help me make educated and thoughtful decisions to give my dad the best possible chance of survival was a selfless act of service.
Joe said to me one evening, “Having been a patient, I understand what it’s like to be at your most vulnerable moment. I cannot even begin to imagine what I would have done had my family not been at my bedside as a support system and patient advocate.”
During this time and throughout the pandemic, Joe published a piece describing the impact that strict isolation measures would have on patient care by removing loved ones from the bedside.
“You can imagine that there is literally no one who could potentially care for you more than a loved one. And when we, as patients, lose those individuals, you can’t help but think about how that impacts the care of your mom, dad, sister or brother. And this is in no way a reflection on the healthcare professionals that work tirelessly to provide and deliver high-quality care; it’s simply a realization that the people who know you the best are the ones that have been by your side for years." On May 12, a few days after Mother’s Day, my mother passed away from COVID-19 at another hospital. Her weakened body couldn’t sustain fighting the virus. Despite pleas to the hospital administration, only one sister was allowed to go in person to say goodbye the day before she passed. We chose our youngest sister, Maureen, her baby. Our goodbyes to our beautiful and fiercely-loving mother were said via video call. Our dad, on a ventilator miles away, had no idea his wife had passed. My mom’s caretakers were incredibly kind, and empathetic and gave us comfort through her hospitalization. One of her doctors, who was also a nun, prayed with her daily and asked if she could be the one to administer her last rights. You do not forget that level of compassion. My dad’s battle would go on for another two and a half months. While Jenny oversaw the entirety of my parents' house and their bills, Maureen handled the care details for my mom and I oversaw my dad’s care.
The hospital was at maximum capacity on many levels and started mandating only a daily phone call to each family. I ingratiated myself to the nursing staff to get more information frequently. We sent
breakfast weekly to the nurses in the ICU. When breakdowns occurred, we utilized our personal contacts within the hospital
administration. Tensions ran high at this point of the pandemic and navigating with respect and persistence became an art form.
Dad was on and off the ventilator, put on dialysis, received wound treatment for his foot, managed his diabetes and more. Staying on top of this fraught situation involved an organizational matrix to track specialists, plans of care, medicines and the specific metrics of progress (or decline). I took copious notes in specific detail to ensure I knew the big and small pictures. This kept me informed and ready to have high-level conversations with the doctors. When hospital staff schedules rotated and a new doctor called, we could jump directly to the specifics of his care. I would also share these updates with Joe so I could get a well-vetted second opinion.
The worry of not being there to stay on top of his medical care was only part of it. The thought of either of our parents feeling alone, confused and scared shook us to our core. It was imperative to us that they knew we were there fighting for them. Worsening that fear was the likelihood of them experiencing delirium. Very common in longer and complex hospital stays, this confused state of mind is worsened by isolation.
We scheduled as many video calls as possible. Even though he was mostly sedated and ventilated, we wanted him to hear our voices and know we were there, fighting for him. We played music, had the girls tell him about their soccer games and scheduled time for our other family members to join us. We would ask him to raise his eyebrows or nod his head in response. Most times
he didn’t, but when he did, we would sob tears of joy and pray it was the beginning of a breakthrough.
DISCHARGING WITH UNCERTAINTY
At the time, in order to be considered discharged or moved to the next phase of care, a patient needed two negative COVID-19 tests days apart. Even after he was moved out of the ICU and off the ventilator, my dad kept testing negative and then positive over and over.
His body had been decimated by the virus. He was now on dialysis, using a high level of oxygen and had a tracheotomy. He could only speak when using a speaking valve when a nurse was in the room to monitor its use. The bed wound that he had developed had become one of the biggest concerns due to his ability to heal. However, he finally tested negative twice.
The uncertainties about his quality of life were abundant and unknown, but he was alive and the hospital was ready to discharge him. The best place for him was an LTACH (long-term acute care hospital which provides an intensive acute level of care to medically complex patients who no longer require hospitalization). And while the last few weeks of being out of the ICU allowed us some visitation (one at a time, once a day), the new location was in the city, which still had strict isolation policies. We would be separated from him again. The day he was discharged, he was transported via ambulance to the LTAC. We were beside ourselves about this moment. We carefully coordinated timing with the hospital. We waited outside with some close friends and signs to greet him in the transition. It was a bit anticlimactic. The ambulance drivers rushed him by without pausing or acknowledging us and got him loaded. We ran alongside them so he could see and hear us assure him we were following him and would be there before he was admitted. We raced down the highway, frantically found parking and stood by the door while they rushed him past us. And then he was gone again. The next month was bumpy all over again with his health and aligning with the staff at the LTAC. When we left the hospital, we had a solid flow of updates, limited visitation and a small glimmer of hope that he would recover. It took several terse and relentless conversations before I developed a rapport with the chief medical officer. Unfortunately, my dad’s health did not go in the same positive direction. By mid-month, he was back on the ventilator. He passed in the early morning hours of July 30.
LESSONS LEARNED
Our parents were the cornerstones of our lives. My sisters and I received unconditional love and support from them. As deep as our pain is about the horrific way we lost them, we also know how incredibly lucky we were to have had them for the time we did. I can only explain our efforts to advocate for them as a primal instinct. I believe the unknown of the virus and the isolation from my parents brought out a fierce relentlessness in my ability to advocate for myself and my loved ones. Trusting my instincts and making my voice heard on their behalf was unshakable. And while such a loss can leave you worse off, I am certain it can also make you better. While I wouldn’t wish my experience on anyone, I hope that it can shed some light on how important it can be to be or select a prepared health advocate. In precarious situations, being steadfast and diligent can make a difference in the short and long-term outcomes. I’m incredibly proud of my sisters and me for how fiercely we worked to try to save my parents and I know (and pray) they are too.
READ 5 TIPS ON HOW TO BE A PREPARED HEALTH ADVOCATE
