Cases of caregivers unable to accompany patients with dementia in health services are multiplying, with stories of elderly people disappearing from the system or leaving the hospital alone and being found, by neighbors, “sleeping on the floor of the building”.
For 10 years, the law has guaranteed all users the right to be accompanied in health services, but this is a diploma that is often ignored.
In 2023, the Health Regulatory Authority (ERS) received 994 complaints related to “monitoring during the provision of care” and in the previous year it received 1.018 complaints.
Not all of them concern patients with dementia, but «they happen with some frequency and are absolutely unacceptable», Catarina Alvarez, from Alzheimer Portugal – Portuguese Association of Relatives and Friends of Alzheimer's Patients, told Lusa.
Among the complaints made to the ERS is that of Jorge's family members (fictitious name), prevented from accompanying an 84-year-old man to the emergency room at Hospital Garcia de Orta, in Almada.
One early morning in October last year, the woman waited on the street until she was advised to "go home rested", because the tests would "take more than six hours" and as soon as "the patient was discharged they would contact her », reads the complaint written by the niece.
However, a few hours later, around seven in the morning, she was alerted by neighbors that her husband “was in the hallway of the building sleeping on the floor”.
In Jorge's case, there was also a failure in the patient discharge procedures. Last year, the ERS received 116 complaints related to patients who were discharged “without contact with a companion” or in which there were “failures in surveillance and control of departures”, explained the ERS communications office.
Again, not all of these complaints concern patients with dementia. Not all of them mean that the person has disappeared, emphasizes the ERS press office.
But, when entering the emergency room alone, «the risk of disappearance is quite high, as is the risk of the person not being found in a timely manner», warned Catarina Alvarez. Fortunately, she added, “most of the time, the outcome is positive, because the person is found by a family member or someone looking for them.”
This was the case of Maria (fictitious name), who “disappeared from the Garcia de Orta system” for several hours, leaving the family in panic.
«Incapacitated in terms of hearing, mobility and speech», Maria also entered the emergency room alone, because the family was prevented from entering and advised to go home.
Hours later, “no one knew about my mother”, reports the daughter in the complaint sent to the ERS, in which she reveals that an employee told her that her mother “was not in the system”: The doctor had given her “discharge due to abandonment”. , for not attending the emergency appointment.
«How do they want a person who doesn't walk, doesn't hear, doesn't speak and doesn't have the ability to reason to be able to understand or even move to go to an emergency appointment?», asks the daughter, also criticizing the services for not warning the family from which the mother had been discharged.
«If we hadn't called to check on her, she would still be lost in that hospital today», accuses the daughter.
The following month, they had to return to the hospital, and the right to have a companion was again ignored, despite the daughter warning that the woman was unable to explain the reason for going to the emergency room.
The presence of a companion is also «an advantage for the clinical team, because sometimes people have difficulty describing their clinical situation and, therefore, having a companion is fundamental and necessary», highlighted the president of the Portuguese Association of Hospital Administrators , Xavier Barreto.
An example of this was Teresa's (fictitious name) recent trip to the emergency room. The lady with Alzheimer's fell and hit her head, losing consciousness for a few minutes. Upon entering the hospital, her niece was prevented from accompanying her, despite having alerted her to her aunt's clinical situation and her inability to transmit information.
Result: The discharge letter stated that the patient had no complaints or pain, her daughter told Lusa, stressing that "it's normal to happen whenever she goes without a companion, as she doesn't remember the reason she was taken to the emergency room."
This case never came to the attention of the authorities and the family intends to remain anonymous, especially because it is very likely that they will have to return to the same hospital.
In September, when Teresa was admitted to the emergency room of a hospital in Coimbra, her niece, who is a caregiver, was prevented from entering. The family spent more than 48 hours without information, despite many contacts.
Teresa's daughter says that only when the family threatened to file a complaint with the General Inspection of Health Activities (IGAS) did the lady appear: «She was delivered naked, dirty, barefoot, covered with a gown and sitting in a wheelchair» , he reminded Lusa.
On that day, the mother carried her dirty clothes, mixed with her citizenship card, on her lap in a plastic bag. During those two days, Teresa “did not take her medication, did not receive hygiene care, nor was she taken to a bathroom,” she said.
But there are cases that, even under threat, remain unresolved, such as that of Avelina Ferreira, who disappeared on December 12, 2023, after having entered the emergency room at Hospital São Francisco Xavier, in Lisbon, alone, as her husband was prevented from accompanying her. She waited outside the emergency room for seven hours until she discovered that Avelina was missing.
The president of the Portuguese Association of Hospital Administrators, Xavier Barreto, argues that in these cases it is important to investigate what happened.
From a decade-old right that has already motivated thousands of complaints, the ERS advanced two administrative offense cases: One case occurred in 2017 at the Instituto Português de Oncologia do Porto Francisco Gentil, and another in 2018 at the Centro Hospitalar Universitário do Algarve. Both health units were fined a fine of 2.500 euros.
Comments