Behind Closed Doorways, ‘the Issue and the Magnificence’ of Pandemic Hospice Work

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Behind Closed Doors, ‘the Difficulty and the Beauty’ of Pandemic Hospice Work

Hanane Saoui is used to death. Sudden and slow deaths. Painful Deaths and Peaceful Deaths.

This year was different.

The coronavirus pandemic has dramatically changed Ms. Saoui's work as a hospice nurse in New York. Security measures created physical distance between her and her patients and even separated some of her hospice colleagues from their clients' homes last year. It deprived families and caretakers of opportunities to grieve together, and faced hospice workers familiar with death with astonishing levels of loss.

Despite the pressure, Ms. Saoui and other staff continued to give comfort and even moments of happiness to dying patients and their families.

"You sit down and listen," she said. "You express your fear, you express your feelings, and you guide them and tell them what to expect." After a patient died, she added, "I want to hug family members a lot, but now I can't."

Instead, Ms. Saoui said, "I pray and do the best I can."

More than half a million Americans have died from the coronavirus, and many have died in pain, isolated from their families. Ms. Saoui contrasted these conditions with what she called a good death: "peaceful, pain-free, at home and surrounded by loved ones."

While the nurses continued their personal home visits, some chaplain, social work, and therapy sessions went online as the families preferred. By August, most of this care had been switched back to face-to-face visits, but with strict precautions, including wearing a full P.P.E. at times, and if possible, six feet apart.

Although the vast majority of Ms. Saoui's patients did not have coronavirus when they entered the hospice last year, challenging restrictions were placed on all patients and caregivers. Hospice home care can last for many months, and workers often develop close relationships with patients and their families.

However, the pandemic has left fewer occasions for families – and hospice workers – to grieve in person at funerals or memorial services. For over a year, the size of these gatherings has been strictly limited by many states in order to contain the spread of the virus.

When hospice patients die, their caretakers often work with their own grief and loss in weekly staff meetings and meetings with colleagues who share the same customer. These staff meetings are now online, but the loss of holding each other on and shedding tears has hit hospice workers deeply, said Melissa Baguzis, a social worker who specializes in pediatric cases. She has developed her own ways to deal with the loss of her young patients.

"I'll take a moment, light a candle and read your favorite book or listen to your favorite song," she said. “I have my own time for her. We are connected to their families, but when I am in their homes it is their grief and I will support them. In addition, I have to deal with my own loss. "

The hospice workers at MJHS Health System, a nonprofit based in New York and Nassau Counties, are as comfortable about death as many Americans are not. But the pandemic has placed an additional burden on her and her patients, said Ms. Baguzis. "We all share each other's grief now more than ever," she said.

Rev. Christopher Sigamoney, an episcopal priest who is a hospice chaplain, said he tried to be there for his patients "despite their frustration, anger, hopelessness, depression and fear".

He often told the patients' family members that it was "okay to be angry with God" because their loved ones were lost. But he said the death of a beloved cousin from the coronavirus changed his understanding of his work.

Father Sigamoney and his family could not be with his cousin, a retired doctor from India, during the three days she was hospitalized on a ventilator at the end of her life. He and a handful of relatives said "a few prayers" at the funeral home, but virus restrictions prevented them from having a "proper burial" or sending the body home to India.

"I didn't really understand when people would ask, 'Why me and why my family? "He said about the time before his cousin's death." Now I've been asking the same questions. I said to God, "Now I'm angry with you and I hope you can forgive me." Father Sigamoney said he was recovering slowly through prayer and help for his patients.

Last month, Josniel Castillo was hooked up to a series of medical equipment and monitors, surrounded by his parents and a host of stuffed animals, when Javier Urrutia, a music therapist, and Ms. Baguzis entered his cramped bedroom. Despite his deteriorating health due to a rare genetic disease, it was a happy day. It was Josniel's 11th birthday.

Mr. Urrutia started "Las Mañanitas", a traditional Mexican birthday song. Josniel's mother and father, Yasiri Caraballo and Portirio Castillo, took part. Mrs. Caraballo wiped away her tears. They were "tears of joy" because she did not expect her son to be 11 years old.

She asked for a different melody and played the tambourine when Mr. Urrutia joined “Que Bonita Es Esta Vida”. Together they sang the last chorus, part of which can be translated into:

Oh this life is so beautiful

Though it hurts so much sometimes

And despite his worries

There is always someone who loves us, someone who takes care of us.

Afterward, Mr. Urrutia said that most of the people "do not know what is going on behind closed doors, both the difficulty and the beauty".

This year there was "a lot of pain and suffering in countless houses, it cannot be denied," he said. But in hospice work, he said, “You also see all the heroes out there doing the simple things in life and taking care of one another. The husband takes care of his wife or the mother takes care of her son. "

"Dying is part of life," he added. "Only living things die."

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