Dying without palliative, without being able to say goodbye and without the right to ICU

«Tell the doctor, I’m very sick. I need to be admitted to the ICU ”, was the last WhatsApp that Manuel sent to his children days before he died. A cry for help that will never be forgotten. In his case, such a host of errors were united that they did not end even with his death. Manuel Mercader, a retired nurse, was diagnosed with rectal cancer with liver metastasis in the summer of 2017. After chemotherapy and radiotherapy, he underwent two surgeries: liver and rectum. “Not even half a year passed between the two interventions. Then they gave him chemo again. “My father – he continues – had the misfortune that he had to face the first cycles of his treatment with my mother in the Palliative Care Unit for another cancer.” Even so, Manuel “settled in” with her in the Palliative Care Unit. “He was always with her, except two or three days after each chemotherapy session because we forced her to go home to rest.” He therefore knew what he was facing, but it was very hard to face his own illness with grief. His wife passed away in February 2018.

The months went by and at the end of 2019 in a review at the Torrejón de Ardoz Hospital, the doctors, after seeing new lesions in the liver, consider that they are not operable and that they do not have alternative treatments. It was at that moment that “we realized that they ignore you.” They did not tell them where to go. Through the Spanish Group of Cancer Patients (Gepac), they get a second medical opinion at the Gregorio Marañón, where, after analyzing his case, they see that they can operate on him. They give him an appointment for February 28, but a week before he is admitted to the emergency room for a liver problem.

From that moment on everything went downhill. “They put a drain on him and gave him pancreatitis,” Laura recalls. The surgery was suspended and the pandemic began. “When I had been in the hospital for a few weeks, a patient with pneumonia of unknown origin who was PCR negative was admitted. There were already Covid plants in this hospital so I don’t understand why they put him with my father without a mask or protection. Four days later, the man, who did a second or third PCR, tested positive and was transferred to the Covid plant. On March 13 they do it to my father, who tests positive and they also transfer him. At that time his father was asymptomatic. «On the 17th he was referred to the Provincial Institute of Rehabilitation, a center that lacked an ICU and respirators. They asked our consent, but what they told us is that it was a quieter center, not the truth, that they referred patients there who had no solution or who were not going to refer to the ICU. It was a place to die, ”he says. His father begins to get worse, presents a bilateral pneumonia. The next day he was rushed to Gregorio Marañón due to a mucosal prolapse of the colostomy. The bag had come loose. “They took him by ambulance and when he arrived, due to the chaos of those moments, they left him out in the open one day when it was raining. They didn’t even put a blanket on him. On March 24, Manuel writes to his children begging for help.

“That’s where our fight began by asking for a respirator through social networks and the transfer to the ICU from another hospital, public or private, or outside Madrid. We got a respirator, but the Rehabilitation Institute lacked support to install it and they didn’t even give us the option to move it. Because of my father’s situation and his age, 72, they thought he was not a UCI candidate. The internist doctor told us that we should sedate him because he had again requested transfer to the ICU and the request had been denied as he was an oncological patient. We decided not to sedate him, because hope is the last thing you lose. On March 27, they were informed of the death of their father at 10:20. «It was hard for me to understand because I was not here to die. They decided for him. This is what happened unfortunately to many families in the first wave. Laura and her brothers considered reporting the hospital for being a contagion within their facilities, but finally decided not to do it because “it was a lost battle beforehand because it was something sudden. We are not looking for culprits, but solutions. No sentence is going to give us back my father. But we want the memory of him and of each one of the people who have died not to be forgotten. They have families and many have died alone. It is very hard. My mother died accompanied and my father could not even say goodbye »to his children. And just in that moment of despair, the unexpected. The funeral home was going to make the transfer for the subsequent burial and the body of his father is mistakenly derived to the Ice Palace. After locating his body, they proceed to the burial. But for a few months, Laura had to deal with the funeral home because «they wanted to charge us for a normal funeral service when there was nothing normal. There were no flowers and They wanted to charge even for the double seal when that was put by the UME». The worst thing that Laura wears is «hearing and seeing graffiti on the street stating that Covid-19 is a lie. I can’t do that with that.

Silence

The person who could not properly say goodbye to his wife was Francisco Rodríguez. Mercedes Gil was diagnosed with inflammatory breast cancer in the summer of 2017. After chemotherapy and mastectomy, in March 2018 she underwent radiotherapy. «In October 2019, in an oncological control, they told us that she was recovered. Which filled us with optimism, but in January 2020 the problems began ”, recalls Francisco. «My wife had pain in her spine. A test was done and he got high tumor markers. Despite his history, in primary care they said that it could be cracks in the ribs. They did not establish a relationship with cancer. «The first appointment with the oncologist was given to us for the first week of March. We were very worried about the delay, at least to me. She was in pain, every time she lay in bed it hurt, but she was calm, she didn’t want to know.

That’s when they are told that he had bone metastases. The first hormonal treatment begins a week later and that is when the bulk of the Covid began in Tenerife, remember. Mercedes has bad reactions and on March 30 she is suspended from treatment. But “until May 20 they did not give him the next one.” Calls to doctors begin because Mercedes was suffocating and on April 1 they do an MRI. A few days later, on the 17th, they go to the hospital and “they send her a medication and despite seeing her oncologist, I prefer not to say her name, he sends her home. He was choking … Three days later, I called the oncologist. My wife had a pleural effusion for which she was admitted. I expressed my discomfort to the doctor, who acknowledged that on the 17th he did not see that my wife was suffocating “, something that Francisco cannot understand because” three days later they had to extract more than two liters. “

“The doctor,” he continues, “began to excuse herself with the pandemic. I did not find that excuse reasonable. It has nothing to do with the pandemic. It was evident that my wife was asphyxiating and did not listen to her. In the hospital they only treated her for the stroke, they did not assess that she was an oncological patient with a very low immune system. On May 11 he was discharged and five days later we returned to the emergency room because he was still drowning. It sounds weird, but it was like that. Over time you realize that the errors were chained. On May 21, Mercedes undergoes a new intravenous treatment. At that time “my wife was already in a wheelchair. I insisted that her oncologist see her. It was not possible”.

At the beginning of June Francisco, frustrated with the situation, wrote a letter to the doctor and “while my wife was undergoing chemo I went to her office. I asked him for sincerity. Let him tell me how much time my wife had left, because she didn’t want to know but I did. He tells me that he is not from that school and that without chemotherapy two months and with chemo months or years without specifying ». Summer arrives and on August 3 they receive good news: «The tumor had remitted in half in the pleura and liver and the bone had stopped. It filled us with optimism. But in October everything precipitates. «On the 15th we went to a consultation because his head hurt. They asked for a control scanner for November 24, it seemed late to me, so I called and they gave it to us for the 21, but it couldn’t be. Two days before we went to the hospital and when they saw the pleural effusion, they decided to hospitalize her so they would not leave. Chemotherapy is stopped until the infection goes away. They inform me by phone that my wife has a tumor in the meninges. Mercedes is not feeling well, at night she suffers from hallucinations and is having a very bad time, something that Francisco finds out not from the doctors, but from his roommate.

«On November 6 they summon me. I fear the worst so I go with my sister-in-law. When we enter there are two oncologists on the floor and hers, who only looks at the ground. They tell me they evict her without using that word. And that we can see it 24 hours two people in the room. My wife had neither palliative care nor a psycho-oncologist. They told me at 11 that I had to give him semi-sedation because he was suffering, and I thought my wife would be conscious but without pain. But it was not like that. In an hour he fell asleep forever. I could not say goodbye. The last thing he said to me was ”Everything is fine Fran, everything is fine ” ». He died on November 10 at dawn.

Weeks later, Francisco reviews everything that happened. And he decides to write a new letter to the oncologist with his questions. «The doctor does not receive me and I give it to the nurse. I asked him to respond to the email or the phone if he considered it. To this day Francisco is still waiting for an answer. “I couldn’t really say goodbye to my wife” from whom he had not separated for 37 years. “I only have his memory.”

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