I am 79 years old, I live in Rome, and I am a member of Ufha (the Association of Families with Disabled Persons). On November 2, 2020, my only son, Alberto, returned to the Father. He would have turned 51 this year. Born with severe cerebral palsy and profound disabilities—what medicine calls a "non-communicative patient"—he was hospitalized for lifesaving surgery and contracted COVID in the hospital. He died there. We could not be with him. We never saw him alive again, and never saw him after death. I need not say what it means to lose a son, especially in such a way. But I want to use what happened to Alberto to push for change—to improve the lives of patients who cannot speak for themselves.
In his 49 years, Alberto had to undergo countless medical visits and hospital stays of varying lengths. Through this, I came to understand what it means to bring a "non-communicative patient" to a doctor or hospital. By definition, such a patient cannot give information, cannot answer standard questions, cannot report pain or problems. I do not wish to blame the medical staff. The pandemic made clear the dedication and sacrifice of those who fought to save lives, sometimes at the cost of their own. But families of people with disabilities know how hard it is to establish any kind of contact with someone who needs time and patience—resources doctors, dentists, and nurses can rarely spare. We know how much even small breaks in routine can cause harm. This is why such a patient needs someone—a caregiver who knows them deeply—to stand between them and the doctor.
The presence of a family member or caregiver is essential. They are the only ones who truly know the patient—their history, their responses, all the things the patient cannot communicate directly. Yet this rarely happens, even though families could help medical staff in countless ways. The staff has no special training in this area, and the consequences can be grave. There are serious gaps and inconsistencies in how non-communicative patients are evaluated and treated compared to others. Two examples: Emergency Medical Services are not required to see a patient who cannot communicate (each local office decides for itself); some diagnostic tests can only be done on patients who can cooperate (such as swallow testing before a feeding tube procedure—a discriminatory practice with serious consequences for the patient).
When I learned that the Rome Medical Board was offering a continuing education course called Medical Care and Treatment Pathways for Persons with Disabilities, I attended as the mother of a severely disabled son. I studied, spoke with families and professionals, and discovered things I had not known—including regulations and policies passed by the state and regions following the UN Convention on the Rights of Persons with Disabilities. For example, the Dama project; the Lazio Region's Charter of Rights for Persons with Disabilities in Hospital; regional rules allowing caregivers to stay with disabled patients in the hospital; plans to set up dedicated welcome and medical services for non-communicative patients (modeled on Dama) in at least two hospitals per province; and the opening of a nursing clinic in Rome for the care of people with complex cognitive and behavioral disabilities who cannot communicate.
Given all this, we ask the relevant authorities to: promote and scale up training courses for medical and nursing staff; promote and establish specific welcome and care pathways for non-communicative patients in hospitals (following the Dama model); ensure that family members or caregivers can always be present in the hospital; ensure that essential medical devices are the safest available type for all patients; publicize support programs and facilities for families; extend emergency medical services to non-communicative patients; inform patients and families about all procedures and treatments, especially those to be given at home.
We are not asking that non-communicative patients receive better or special treatment. We are asking that they receive care suited to their specific needs—welcome, assistance, and medical attention appropriate to who they are.
