My mother’s death and the state of Hungarian health care

She would have turned 81 years old today, on June 20th…If they would have let her.

My mother always wanted to be on the go. Even most recently, for three straight weeks, every single day, we were going somewhere. We essentially visited all of Budapest. On the last day, February 11, 2018, when I had to send her home to Győr by car because I became sick and had a high fever, I was happier than she was to finally take a break at a pastry shop in Budapest. When I sent her home to Győr, the driver walked her up to her apartment.

In Budapest with me, after roaming the city. The last chestnut puree. February 18, 2011).

The next day, like she did every weekday for the past twenty years, she walked over to the local pensioners’ club without any trouble. The same was true on Tuesday. But by that afternoon–as I would find out by telephone–she became dizzy, she had a headache and she said that she could not get up from the chair. At the club, they measured her blood pressure, her blood sugar levels and found everything to be in order.

I recommended that they contact her local caretaker–the son of a childhood friend of mine–asking him to pick her up with his car, have her lie down at home and to give her plenty of fluids. If her situation does not improve, they should call for a doctor. They took her home, had her lie down, she had something to drink and in ten minutes, she was up and about in her room. She was no longer complaining about feeling ill and there was no need for a doctor.

On Wednesday, she once again walked over to the club (from where she walked home), but the dizziness returned in the afternoon. I received a phone call that the situation was now somewhat more serious than before, because her blood pressure had risen to 159 and as a result of the dizziness, she fell.

She was taken by ambulance to the Petz Aladár County Teaching Hospital in Győr on February 14th, initially to the emergency ward. It was not the test results, but my mother’s behaviour that led the hospital staff to send her to the psychiatric ward for observation. Their rationale was that “auntie is confused” (in Hungarian: “zavarós a néni.”) I was informed later that evening.

The doctor on duty at the psychiatric ward phoned me after she had received the patient. We spoke at length and candidly. She saw no reason to keep my mother in the ward. At her request, I not only listed all of my mother’s medications, but also dictated over the phone the contact information of her caretaker, who must be called to pick her up, when she is released. The sound recording of this conversation is available here.

Due to my high fever and illness, I was only able to visit my mother in person at the Győr hospital three days later, on February 17th, at three o’clock in the afternoon. In the most literal sense of the term, I found her in a frightening state.

It is true that I was aware of the fact that as of February 15th, she had been tied down to the bed and that hospital staff had found her to be deteriorating. But according to staff, she continued to eat and drink fluids and was communicating. But this was no longer the case when I visited.

This photo is from February 24th, when she was no longer eating or drinking, but still opened her eyes.

Right away, I considered taking her back with me to Budapest, as she had her regular family doctor in the capital, as well as her cardiologist and psychiatrist. But in such a serious state, I did not dare to transport her.

I visited her during the permitted hours (between 3 PM and 5 PM) every day. At the time, it was not necessary to feed her, as she was able to eat on her own. By Sunday, she ate the eight pieces of chocolate-chestnut puree hearts that I brought in for her. I was only able to speak in person with the doctor assigned to her file, Dr. Zoltán Greff, on February 19th. Until the time of my mother’s death, I communicated with him on several occasions.

From the beginning, he said that there were problems with the vessels in her brain. “There is no tragedy, but there are lots of little problems,” he explained. He added that he would try to treat her with different types of medication, in the hope that she would react well to one of them.

But he gave no explanation for the rapid deterioration in her health.

She would have turned 81 on June 20th, 2018.

I could not understand what was going on. In Budapest, I accompanied her to all of her appointments, we went to her psychiatrist together, which was required due to the changes in her mood brought on by old-age depression. Due to her arrhythmia and her pacemaker, she was examined every six months at the Göttsegen György National Heart Institute. The last appointment was on December 20th. On the last occasion, I was with her day and night for three weeks and absolutely nothing indicated that her health would deteriorate so rapidly, as it did.

She functioned adequately given her age and lived independently. What happened to her, especially so suddenly? I received this answer to my question:

“With such elderly people, a deterioration in their health can happen quickly, there is nothing unusual here. There are problems in the blood vessels of her brain and we need time to set the right medication for her. This can take 2 to 3 weeks.”

He tried to reassure me that they will see what medications work for her.

I had one consultation with him that I will remember for the rest of my life. When it dawned on me that my mother was drinking large amounts every time I visited her (sometimes more than half a liter at once, while previously it was difficult to have her drink a small cup of tea, glass of water or a soft drink), I thought that she was at risk of dehydration, as she is not getting enough fluids. Then I also wondered: are they feeding her properly?

But this was not what I spoke about when meeting with the doctor. I asked him: “If there is a problem with my mother’s brain, why are they not treating her in the neurology department? If she is in a critical condition, why is she not in intensive care?

Dr. Zoltán Greff had this to say:

“They do not transfer anyone from this department.”

“But why not?” I asked.

The doctor bowed his head and did not answer.

“Perhaps because she is old?”–I asked.

“That’s one way of putting it,” he responded.

“So my mother must die?”–I asked.

“That’s one way of putting it,” the doctor answered.

On that day, February 26, 2018, in a few hours, I received the phone call: tonight, at 7:40 PM, your mother died.”

The next day, I was in Győr again. I signed off on all the paperwork, including confirmation that I did not want an autopsy conducted. I organized the funeral and it was extremely painful that she was no more. But for a week, until I received by mail the death certificate, I tried to accept that there was a problem with her brain and this is why she could not live any longer.

Yet the death certificate and the attached pathology listed heart failure and high blood pressure as the cause of death. In addition to the fact that in these cases, and when being bedridden leads to pneumonia, the relatives of elderly patients are duly informed, I considered heart failure as the cause of death unlikely, as my mother had a pacemaker that had just been tested. And it is unusual for someone to die from high blood pressure when they are on appropriate medication to control this.

I received documents showing that it was not a problem with my mother’s brain that killed her.

With difficulty, I received copies of her hospital records, as well as the results of tests conducted in the emergency ward. I was only able to obtain these in person and by submitting a written request. It took a full month for me to receive these after I had already paid the required fee.

From these documents it became clear that the hospital never experimented with any medication in order to determine the “problems with her brain.” Moreover, during her 12-day hospital stay, not a single laboratory test or any other test was ever ordered by the doctor. In the hospital records, the only medication that was listed was that which I dictated to the first doctor I spoke with over the phone, and which my mother had taken for the past four years. Additionally, the only time my mother received fluids through infusion was on the day of her death, immediately before regular visiting hours. And perhaps this was for my benefit, not for hers.

My mother receiving infusion, because of me, on the day of her death.

After all this, I saw no reason why my mother would have been kept in the psychiatric ward. She was only meant to be here for a few days for observation, under the justification that “the auntie is confused,” after the emergency ward had conducted tests. These tests did not justify her in-patient treatment.

But why did they not investigate the causes of her confusion? It crossed my mind that my mother–who from 4 pm to close to 10 pm was being dragged from one test to another–was probably hungry and thirsty, since she had last eaten and had fluids at the pensioners’ club at noon. Due to being tired, hungry and thirsty, she was more confused than what might be expected following a diagnosis from a few years ago of moderate dementia.

If they kept her in hospital, why did not investigate her rapid decline in health? Why did not turn to life-saving interventions?

As soon as she arrived in the psychiatric ward, she was physically restrained to her bed. The explanation was this: “auntie always wants to go.” Naturally, while she had strength, she wanted to get up, she would have wanted to go to the washroom, but she did not know her way around and she needed someone to escort her. Of course the solution was not to escort her to the toilet, but to put diapers on her and tie her to the bed.

My mother tied to her bed on February 25th.

Finally, I must ask a stupid question: what happens if we tie a person down to his/her bed, thus making even the most basic free movement impossible and while we give her the usual medications, we do not provide adequate fluids and food? I admit, this is truly a stupid question.

Maybe I made a mistake, when I agreed not to ask for an autopsy. I did not decide against this because it is not permitted for Jews, but because at the time I did not think that chief physician, Dr. Zoltán Greff, had lied to me.

Yes, my mother always wanted to go.

Dear, God…

Eszter Garai-Édler

Translated from Hungarian by: C. Adam

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