Washington D.C., Jun 9, 2020 / 02:00 pm (CNA).- Federal health officials say they hope the resolution of a disability rights case will help ensure hospital patients are deprived of necessary support during treatment, or left to die alone.
“We’ve heard too many heart-wrenching stories of people literally dying alone during this crisis,” Roger Severino, head of the HHS Office of Civil Rights told reporters on a conference call on Tuesday.
Respecting public health concerns through visitation restrictions should be balanced with other critical needs, Severino said, such as disabled patients having access to support persons and all patients having “access to clergy in their last moments.”
The HHS, he said, has already issued guidance that “there should be access to persons in those end-of-life situations.” In a bulletin published on March 28, OCR instructed hospitals and other health care providers to respect “requests for religious accommodations in treatment and access to clergy or faith practices as practicable.”
During the call on June 9, HHS announced it had resolved a complaint with the state of Connecticut regarding a 73 year-old woman with aphasia, a condition which limits a person’s ability to communicate, who was admitted to Hartford Hospital without her support person on April 19.
Her daughter, Susan Fandacone, told reporters that her mother survived a brain aneurysm 11 years ago, but suffered from short-term memory loss and had lost her voice. When family members rushed her to the hospital, concerned that she had sepsis, they were told that they could not enter with her due to visitor limitations put in place to prevent the spread of the new coronavirus.
With her mother’s short-term memory loss and inability to speak, Fandacone said she and her family feared for her mother’s well-being without an advocate to assist her.
“She had no opportunity to be able to advocate for herself in any way,” Fandacone said. When “she started to fight for her life,” Fandacone said, “what they chose to do was to tie her down and to sedate her.”
Disability rights advocates filed a complaint with the HHS Office of Civil Rights (OCR), alleging that the state limits on hospital visitations during the new coronavirus pandemic did not accommodate the needs of persons with disabilities.
Without the presence of support persons to act as an advocate, the groups said, those with disabilities would not have equal access to the health care they needed; with support persons essential for informed consent procedures and communication with doctors and nurses.
Worse, Severino told reporters Tuesday, narrowly-tailored visitation policies mean persons with disabilities could be left to die alone—an unacceptable situation.
As part of the settlement, Connecticut’s acting health commissioner Deidre Gifford issued an executive order on Monday amending the policy.
The order allows for persons with disabilities at short-term hospitals and outpatient clinics, dialysis units, and surgical facilities to have a designated support person with them, so long as that person is asymptomatic or has not tested positive for the coronavirus.
Severino said the development was “a big step forward to making sure that people with disabilities are not left alone, and are not left to fend for themselves when reasonable modifications can be made.”
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