When Grandma Paquita went home after 12 days in hospital, the scale of the tragedy was captured in a single note on the discharge report: “If her condition worsens, do not bring her back.”
Twelve days earlier, 89-year-old Paquita had been full of life and love, of which there was plenty. Her six children had blessed her with 11 grandchildren and five great-grandchildren. They, and everyone in her village in Málaga province in the south of Spain, knew her kind heart and that there wasn’t a malicious bone in her body.
To Alicia Arjona, the Angels consultant for Andalusia, Grandma Paquita was her very own angel.
“She is the best person I know,” Alicia says, “and to me, she is my second mom. It was always my mom, my grandma and me – ever since childhood. We were super close, just the three of us.”
Just a few weeks earlier the extended family had celebrated her 89th birthday with a joyous feast that Paquita had helped prepare. Besides being a reason to celebrate, 89 was just a number, and one which Paquita defied through her independence, energy and a youthful spirit.
But after a cerebellar stroke interrupted blood supply to a small but vital part of her brain, the number 89 became a stumbling block, a data point that informed a critical decision, after which everything became steadily worse.
A nightmare unfolds
Although it was a Saturday, Alicia was at work when her mom Josefa called to say Grandma Paquita had had a stroke. “My world started crashing down,” she recalls. To make matters worse, the hospital where Paquita was admitted, though nominally stroke-ready, was one that had declined to work with Angels to improve their stroke care. The stroke coordinator had repeatedly rebuffed Alicia’s offers to help them optimise their hyperacute pathway; the nurses displayed no interest in raising the standard of post-acute care.
For several days Alicia would obsessively examine their decision not to treat her grandmother with thrombolysis on the grounds that she had been taking anticoagulents for which there was no antidote. She says, “I was consumed by the possibility that they hadn’t treated her because of her age.”
Meanwhile, a post-acute nightmare was unfolding for Grandma Paquita’s family.
Because Paquita had not been expected to survive her stroke, she’d been transferred to the internal medicine department where she could be surrounded by her family. It would be a matter of hours, doctors had said.
When Paquita stubbornly clung to life, Alicia expected her to be relocated to a unit where specialist nursing care could mitigate the impact of the stroke and prevent complications. But stroke unit beds were reserved for younger patients and those who had undergone recanalisation, and Grandma Paquita was 89.
Fazer o que for preciso
In the internal medicine department where Paquita now lay, there was no FeSS protocol to monitor fever, sugar and swallowing, no neurological evaluation, no attention to the angle of the bed, no anti-platelets to prevent a second stroke, no vigilance concerning the patient’s blood pressure. Unable to persuade the staff to depart from business as usual, an increasingly frantic Alicia put into action the first rule of Angels: she did whatever it took to give her grandmother’s life a chance.
Over the course of the next 10 days, Alicia and Cristina, a young cousin who had recently become a nurse, created a virtual stroke unit around their grandmother’s bed. Alicia displayed the correct procedures and checklists against the wall and on the overbed table. She fetched a glucometer she used for simulation training and instructed Cristina to monitor Paquita’s blood glucose every four hours. She furiously interrupted a nurse who was spooning commercial jelly into her grandmother’s mouth and ran to the pharmacy to buy thickener for a dysphagia test. After a member of the Anadalusian Nursing Steering Committee helped them conduct a teledysphagia screening, Alicia explained Paquita’s feed delivery needs to the rest of the family.
Mad and sad
If the nurses on the ward were less than welcoming of Alicia’s interventions, she simply didn’t care. When they insisted they’d never had a case of aspiration penumonia as the result of dysphagia, she declared that her grandmother would not be the first. When a doctor suggested it might be best to let go, she resolved that it would not be as the result of being given water she couldn’t swallow.
“My grandma was suffering,” she says. “I wasn’t going to allow them to do something just to avoid a fight.”
It made her both mad and sad that her grandmother might’ve been treated differently if it wasn’t for her age. “They just saw another old body,” Alicia says. “That was the most painful thing.”
But more pain was to come.
On 12 June, two days after she was admitted to hospital, Paquita displayed the same symptoms as when she had had her stroke. However, no neurological assessment was done, and no CT scan ordered. Instead, she was given drugs to relieve nausea. Five days later the same symptoms recurred. It was a Saturday, and this time the doctor didn’t answer their calls.
On discharge day on 22 June, a CT scan confirmed a heamorrhagic transformation and a secondary stroke in another part of the brain. The damage was immense.
Then a note was added to the discharge form: “If her condition worsens, do not bring her back.”
Silver lining
Josefa and Alicia still visit Paquita’s home, but she hardly knows where she is or who they are. Although she survives for now, Josefa has already lost her mother, and Alicia has lost her angel. She says, “She’s not my grandma anymore.”
Determined to find a silver lining, Alicia mentions her gratitude to the Angels community in Spain who held her in their hearts and hands throughout the ordeal. And she has never been more convinced of the necessity of Angels: “I now have another example of how fragile the lives of stroke patients are, and how important our work is for helping them.”
The doctors and nurses at the hospital have not seen the last of Paquita’s granddaughter. She says, “I want this hospital to be trained so no-one suffers the same way. They will have to join the telestroke network and the steering committee, and they will have to agree to work with Angels on their protocol and pathway.”
She hopes she can leverage their empathy by encouraging them to imagine themselves in the role of a stroke patient’s family. She hopes to convince them that she’s their ally, and that her intention is to help them become better at what they do. What she doesn’t intend to do is give them a choice.
She says: “They will not be able to say no.”
