Mediation and End of Life
Joel and I spent the entire month of February in a little two bedroom condo that we rented by the Pacific Ocean in La Jolla Cove in San Diego, California. We worked remotely Monday through Thursdays and took Fridays to explore the area, hike, and spend time outdoors.
As soon as we touched down in San Diego on February 1st, my phone blew up with texts. My 88 year old high energy and extroverted (and fully vaccinated) father had tested positive for Covid. He retired from his legal career at age 85 and started a new career as a journalist. Just last year he traveled alone to Israel to conduct interviews for an article he was writing for the Sarasota Herald-Tribune. I ended up travelling by red eye from San Diego to Tampa on February 11th to visit him in a Largo, Florida hospital for a few days and meet up with my siblings Bruce and Samantha. Bruce flew in from Buffalo, N.Y. and Samantha flew in from Tenafly, N.J. Dad had a rare auto immune disease, and my siblings and I did our best to advocate for him, coordinate his care, and communicate with our stepmother who was in Sarasota. He had been warned by his doctors to avoid Covid at all costs due to the auto immune disease.
I quickly recognized that my brother, who is in sales, had the people skills we needed to navigate many of the challenges we were facing in the hospital. One day, when we took a few minutes to grab Lebanese food near the hospital, my brother put the owner of the restaurant in Largo, Florida on the phone with his friend, the owner of a Lebanese retaurant in Buffalo, New York and they chatted for quite a while. Another night, when we grabbed dinner late one night on Super Bowl Sunday at a restaurant close to the hospital, my brother became best friends with our waiter. And of course he quickly learned all of the first names of the hotel staff where we stayed and their children's names. My brother used these people skills as we tried to get the attention of the various doctors treating my father, including a pulmonologist, rheumatologist, attending physician, and infectious disease doctor.
My sister, meanwhile, had an infinite amount of patience with everyone. She was also quite practical and had brought her laptop so that we could fill out endless forms to hire an aide for my father at night. I took on the role of information gatherer, detail person, and note taker as we tried to reach out to people who could help us and also determine next steps for our father's care on a daily basis. I recognized that we were a strong sibling team as we worked together on very little sleep.
My father was transferred from a hospital near his Sarasota home to a Largo hospital more than an hour away from his home on February 9th. The Largo hospital had told us that they had a drug that he needed to put his auto immune disease back in remission and staff who were certified to administer the drug. Time was of the essence. Unfortunately, the hospital did not in fact have the drug. The attending doctor promised that we would have the drug by Monday, February 13th. The infusion that we thought might save his life was scheduled for 1:00 pm that day. Mary Ellen, a nurse who was trained and certified in chemo infusion, was the nurse who was to give the infusion over a three to four hour period and monitor my father in the event he had a reaction.
The drug did not arrive, and Mary Ellen’s shift ended at 7:00 pm. No other nurses were trained and certified to give the infusion. My brother gathered the nursing supervisor, Chris, went down to the hospital pharmacy, got the attending doctor, Dr. Miller, on the phone along with the pharmacy director, and demanded in his magical way that we track down the delivery driver who had the drug. The drug finally was delivered to the hospital but there was no chemo infusion nurse to administer it. We were up in arms since this drug was the only hope to save our father's life. The drug was eventually administered the next day.
My brother then put together a plan on February 20th for an Angel medical flight to fly my father from Largo Hospital to the Cleveland Clinic. My father's rheumatologist was at the Cleveland Clinic and my father's wish for his survival was to go there. The cost was $27,000 which quickly grew to $40,000 given that he was still testing positive for Covid on February 21st. Also, his oxygen levels were decreasing in part because his lungs were damaged by Covid. He would need to fly in an isolation pod. On February 21st, the attending doctor told us that he was suddenly declining and would not be able to fly to Cleveland Clinic. Hospice care started on February 22nd at the Largo Hospital and he died after a couple of hours.
I've been reflecting on the past month and am in awe of watching my siblings do the very best that we could do to try to manage this terrible situation. One of the hardest parts of this story was watching our father have adverse side effects from the high levels of steroids that were part of his treatment.
I used my mediator skills of summarizing, paraphrasing, and reframing so that all of us who were on daily phone calls with nurses or doctors understood the information we were receiving. I wrote everything down and kept a file because I remember and process information best that way. We had to be zealous advocates for my father rather than take the neutral position I need to take as mediator. I was aware of the emotions that we were feeling of shock, anger, fear, grief, loss, and sadness and acknowledged them. We did not sleep well or eat much during this ordeal and we knew that we had to take care of ourselves so that we could manage this situation.
Paul Rudd recently said that "when you lose a parent, the world is off its axis and it never rights itself..." and that is how I feel. Our mother died in 1992. We have lost both of our parents. We are devastated and life will never be the same.
3/9/2023 04:49:01 pm
Thank you for this insightful and so self-aware account of your father's passing and story of how your siblings and you wrestled with he medical system that failed him. I can think of no better patient advocate than you!
3/9/2023 04:57:11 pm
Thanks so much Deb. There is so much more to his 30 day story of battling Covid than this piece. I love that you intrinsically know that!
Phyllis Miller Palombi
3/11/2023 11:23:08 am
I am in such awe at your personal, painful and eloquent sharing of such a tragic life event. For those of us in the healthcare professions, I know this is a lesson that will reverberate and make us all aware of our advocate roles we need to play in healthcare. I know we spoke, but your writing really is an important sharing that I understand even more of what you went through. My heart is with you. My anger at our medical system will propel me to work harder to enable our care systems to really work to utilize the medical advances tat can save many more. I am sorry it was too late for your Dad.
Phil & Toni LaNasa
3/13/2023 11:09:15 am
Bruce and Karin have been very good friends for over 25 years and we have been very fortunate to have had the pleasure of meeting many of the Halpern family over these years. This article is wonderful in its documentation and showing the herculean efforts to save an incredible man. Our heart breaks for all of you.
3/17/2023 02:33:38 am
3/17/2023 05:18:35 am
Ellice, I am incredibly sad for you and your family's loss. Your article brings much insight. Thank you for taking the time to share as many of us will benefit.
3/21/2023 09:32:46 pm
Beautifully written. I love you.
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Ellice Halpern, J.D., is a Virginia Supreme Court certified general and family mediator.