Our project staff often encounter reluctance on the part of medical providers to treat people with intellectual impairments. Much of what we do focuses on getting people to see our patients as deserving the same good medical care as those without disabilities.
Christine is a 64-year-old woman who lived most of her life at home with her parents. When her parents died in 1996, she moved to live with another family in a supportive setting. She has early Parkinson’s disease in addition to an intellectual disability. As her Parkinson’s disease progressed, Christine began to have falls. One of these resulted in an ankle fracture. She was hospitalized, and was also found to have pneumonia. The physician contacted her guardian prior to treating either condition, and asked: "Should we treat Christine or let her go?" Christine’s guardian, who was also her cousin, was puzzled by the question, and replied, “Of course you should treat, why wouldn’t you?” Christine was treated.
Despite good medical care prior to this illness, the hospital ignored other conditions Christine was currently being treated for. Her care became fragmented, and this problem persisted into her convalescence. The worried guardian spoke to a nurse practitioner from the Medical Safeguards Project and enlisted her help.
It became clear to the nurse practitioner that oversight, coordination, and advocacy were needed. After her hospitalization, Christine went back to live with the same family after several months. She had several life-threatening crises over the next few years. Those crises included conditions that needed vigilant tracking and a keen eye for preventative care. It became obvious over time to the Medical Safeguards Project’s nurse practitioner that for a variety of reasons, Christine was too medically vulnerable to remain living with that same family. Christine was helped to move into a more supportive situation where she now receives the care that she needs. Christine is happy and healthy, enjoying life, and looking forward to the future.
The nurse practitioner from the Medical Safeguards Project clarified health problems and treatment measures, coordinated care with medical providers, supplied information during crises, and advocated for treatment and support. At several junctures, she supported the guardian to convince medical providers that aggressive care for Christine was warranted.
Owen was a 78-year-old man admitted from a nursing home to a local hospital for treatment of aspiration pneumonia. Once quite active in his town, a hard worker and a Little League baseball coach, Owen had a stroke when he was 75. Unable to swallow or walk, he spoke with some difficulty and had use of his right arm and hand. He had a gastric feeding tube (G-tube).
On the day of his admission to the hospital for pneumonia, Owen’s case manager visited him. He was alert, as well as quite hungry and thirsty. Why? Because his G-tube had been clamped, and a decision had been made to withhold further nutrition and hydration—food and water—and not to treat the pneumonia. Plans to transfer him back to the nursing home were in motion, where if nothing changed he would have died a slow death.
The physician contacted Owen’s nephew, his legal guardian, describing Owen as a non-verbal bed patient who had frequent aspiration pneumonias from reflux of G-tube feedings. The doctor said that further G-tube feedings would kill him. Owen’s nephew sadly agreed that his uncle had “suffered enough” and that “his time had come.” Rightly alarmed, the service coordinator contacted a Medical Safeguards Project nurse practitioner, who immediately went to the hospital to assess Owen’s condition. After speaking with his physician, who stated a refusal to “go against the wishes of family,” our nurse practitioner contacted an attorney from the (then) Department of Mental Retardation.
Within three hours, the attorney had obtained a court order for temporary resumption of G-tube feedings as well as treatment of the pneumonia. Treatment was resumed after the Medical Safeguards Project nurse practitioner presented the court order to Owen’s physician. Subsequent investigation by the court found that Owen had not been treated for aspiration pneumonia for over a year, and so his active treatment status was reinstated permanently.
The Medical Safeguards Project nurse visited Owen the following day, and found him singing one old song after another in a wonderful booming voice. His roommate at the hospital was an elderly man who was dying, surrounded by his family. The family sang along with Owen through their tears. Owen enjoyed two more years of life, beating anyone who dared play cards with him, and singing and enjoying all kinds of music. His nephew would visit, grateful for the happy outcome.
This experience illustrates several safeguarding lessons. Owen was highly vulnerable, due to his medical condition but more significantly to his socially devalued status, as a man who was elderly, physically impaired, and had an intellectual impairment. Owen’s condition was treatable, a reality unfortunately covered over with misleading language. Quite upset, the service coordinator knew who to call for help. The nurse practitioner had access to important resources, including a lawyer. The language used by the physician—such as “already suffered enough”—was a red flag to our medical safeguarding staff. Communication between the doctor and family, as too often happens, was carried out over the phone, without personal contact, and without other concerned individuals included in the conversation.