"I’m writing this in an effort to remind my fellow health professionals to not lose sight of who we are taking care of in the face of COVID-19: human beings. My family became victims of a deeply dehumanizing experience at the very end of my father’s life. I have no doubt that this experience was derived from fear and panic. My father succumbed to complications from lung cancer this past Monday morning." ~ Marissa Fratoni
"Two weeks prior to his death, my dear sister transferred him to a Boston hospital as he was struggling to breathe. He had been battling stage 4 non-small cell lung cancer (NSCLC) with metastasis to the bones and liver for two years. His battle was full of struggle - months and months of chemotherapy, immunotherapy, radiation, and a clinical trial did very little to delay the disease progression. When my sister transferred him to Boston in the last week of February, he was emaciated from cachexia, in severe pain, unable to walk, unable to swallow, unable to breathe with oxygen saturation plummeting into the 70s (normal is between 95 and 100%) whenever he tried to exert energy. He had massive pleural effusions and pneumonia that was unresponsive to antibiotics. He was on high flow oxygen for the duration of his hospitalization. He was never able to wean down or off. His heart flipped in and out of tachycardia atrial fibrillation and flutter. He required several rapid responses. The medical team threw the kitchen sink at his symptoms. Every day brought further decline. He was dying.
On day 11 of his hospitalization, my Dad decided to change his code status as his heart once again flipped into tachy/afib and his room filled with incredible health providers who were committed to helping him survive. He decided that his fight was over and his advance directives were changed. He became a Comfort Measures Only (CMO) patient that night.During his hospitalization, he was screened several times for covid-19 but never met the criteria for testing. He tested negative for flu, adenovirus, and RSV.
On day 12 on the medical-oncology unit, he all of sudden fit the criteria for testing. He became a Person Under Investigation (PUI) for covid-19. The Department of Public Health had issued guidance that health providers should use their discretion and request testing for any person who met any criteria for covid-19. On CT scan, Dad’s lungs looked like they were being compromised by a viral infection pneumonia - this is the reason he became a PUI. He never had a fever, a sore throat. Only SOB. His exposure to sick people was limited as he was mostly homebound for the two months prior to being transferred to the hospital.
At 10pm on day 12, my sister was told by Dad's oncologist that he would be tested for covid-19. We weren’t told what testing him would entail beyond the NP and OB swabs, and that he would be placed on droplet precautions.What ensued was a great deal of chaos. A protocol that had never been carried out by the hospital staff was initiated after midnight. The protocol specified that any PUI for having covid-19 would be transferred to the ICU where the staff was trained to handle such patients. When the protocol was initiated, my sister was told by a nurse in a PAPR that she had to leave (she was sleeping in a recliner in my father’s room as he was actively dying.) She was told to go home and isolate for 14 days.
The fact that our father was dying seemed to be lost on the panicked nurse who provided this information. This fact also seemed to be lost on several other members of the now mobilized covid-19 containment team. I had to advocate for my family at 2am having found out what had happened from my traumatized sister. In the meantime, she and my father were being transported to the ICU by people who were flipping the pages of the protocol book in her face, and a security guard who was terrified of his transport assignment. Thankfully, the administrators who were contacted that night understood the magnitude of the situation. My sister and I were allowed to be in the negative pressure isolation unit that our father was transferred to.
In the span of just a few hours, we were a family facing the impending death of our father to the atrocities of lung cancer in confinement. Somehow our father had become patient zero in the 11th hour. Our privacy was completely removed. We were on display for the entire ICU to see. We might as well have been zoo animals.
In the morning of day 13, our father was tested for covid-19 in the ICU a few hours before his passing. The nurse who came in to swab him could care less that the stress of this event catapulted him into a period of delirium. His daughters’ faces were not familiar - they were shoved behind masks. He was in a strange place, not the room he had been in for the better part of two weeks. A nurse wearing a gown, gloves, shield, and face mask interacted with him as if she was inconvenienced by his episode. He was agitated, restless, trying to derobe - managed to say “I gotta get out.” We begged her to let us settle him, but she flew at him anyway - shoving swabs up his nose and into his throat.
A few hours later on day 13 of his hospitalization, our father succumbed to NSCLC. We didn’t have his Bible, we didn’t have his rosary, we didn’t have the small wooden cross that he had been holding for the nearly two weeks leading up to his death. We weren't allowed to have these items because they were presumed to be contaminated. We held his hands, prayed over him, and for him. Despite everything that had occurred in the last 12 hours of his life, his passing was peaceful. He was surrounded by love. And thankfully, the ICU nurses charged with his care were wonderful.
Thirty hours after the swab tests were administered, I received the call that our father's results were NEGATIVE for covid-19.
As fellow health professionals (my sister is also in the field) - we understand the magnitude of this situation. We can intellectually understand why our father became a PUI. We understand the rationale for attempting to contain his potential infectious disease. Although we remain perplexed as to why all of this transpired after he was on a medical-oncology unit for nearly two weeks, in a shared room no less. After a parade of the people, who loved him most, came from near and far to say their final goodbyes. After he was in contact with dozens and dozens of health professionals charged with his care.
Today (Monday) marks a week since my Dad has passed. There is little solace for myself and my sister. We were dehumanized in the final moments of our father’s life. Treated like lepers, like pariahs. In a time when we should be comforted knowing that our dear Dad is no longer suffering, we are struggling with grief complicated by post-traumatic stress. We cannot get these precious moments back. In honoring our father, he would want us to turn this wrong into a right. And that’s why I am sharing our story. As a fellow health professional, I implore you to remember that this is not the time to lose our humanity due to panic and fear. This is the time to prioritize it.Thank you for reading. Please take care of yourselves as you care for others.
Thank you for all you do."
Marissa's Dad's Obituary Here
Marissa Fratoni RN, BSN
For nearly twenty years, Marissa has helped people walk their own healing paths while accounting for each individual’s own needs as a whole human. She is a holistic nurse and multi-disciplined health practitioner specializing in women’s health and behavioral health, further specializing in substance abuse and addiction. Marissa is well-versed in complementary and alternative healing modalities including primary, patient-focused nursing, massage therapy, yoga and mindfulness practices, integrative and functional nutrition, and cannabinoid therapeutics. She has participated in the advancement of cannabinoid research for nurses and other health professionals as a member of several education and research committees with the American Cannabis Nurses Association. She has helped people struggling with an extensive array of diseases such as Parkinson’s disease, Lyme disease, anxiety, depression, chronic pain, cancer, Alzheimer’s disease, opioid and pharmaceutical addiction, and alcohol dependence to integrate cannabinoid therapeutics into their conventional and holistic health regimens. https://holisticnursemama.blog/