Could we ensure that families don’t have to piece together the care they need?
Earl’s story shows what happens too often now, but it doesn’t have to be this way.
Earl had an advance directive, an attentive daughter, and insurance. It wasn’t enough.
Earl, 80, retired after decades at a large IT company to devote himself to golf and his local food bank. He felt lucky to have all the money he needed, and a conscientious and well-informed daughter to act as his medical power of attorney. A widower, he had an apartment in an assisted living complex, an expensive insurance plan, and well-regarded specialists.
Things began to change when his left hand began to shake, and a neurologist diagnosed him with Parkinson's. When his daughter sat down with him to plan his future care, Earl knew what he wanted. He had cared for his wife while she died of breast cancer. He told his daughter that he didn't want to be in an ICU if he was going to die anyway and didn't want a feeding tube—"No way!”
His life became a confusing, dehumanizing series of transfers.
By age 84, Earl’s Parkinson’s got a lot worse. He lost his cognitive abilities, and because of balance problems, was falling frequently. At the assisted living complex, Earl would wander, get lost, scream in agitation, and resist every attempt to calm him. To prevent this, he was medicated more heavily, leading to more falls.
Every time he fell, the aides at Earl’s assisted living residence, who had no access to a clinician who could assess Earl and no contact with his primary medical team, would call an ambulance and have him taken to the hospital. His daughter would meet the ambulance at yet another hospital ER and explain his story over and over.
Every institution seemed to be a medical silo, disconnected from Earl’s values.
The ER doctors were generally efficient and reassuring. They found urinary tract infections, pneumonia and drug interactions. The ER doctors, and the inpatient team, would 'fix' the latest problem and discharge Earl to a nursing home—different each time--telling his daughter that he needed to 'get stronger.' But each time Earl returned to his assisted living home, his mental and physical condition were worse than ever. When Earl went to his different outpatient clinics, his subspecialists each focused on just their organ system, and they didn’t seem to talk to each other.
In his final year of life, Earl was hospitalized nine times, with bills exceeding $1 million. On his last hospitalization, Earl was groaning and incoherent, hands and feet bound by restraints, unshaven, with his hospital gown crumpled at his waist. When the nurse tried to give him his pills, he shook his head and said, “No, no, no.” The nurse turned to Earl's daughter and said, "You know, it might be time for a feeding tube.”
Earl's daughter finally realized the treatments were making him worse.
Remembering the discussion she had with him years earlier, Earl’s daughter was horrified, but said nothing. A parade of doctors, nurses, and a speech therapist all asked her the same question, over and over. "They didn't make it easy," said Earl’s daughter.
Finally, Earl’s daughter moved him to a new assisted living complex that she chose because they agreed to stop sending him to Emergency Rooms. When he developed another a fever and began to cough, she realized that her father was at the end of his life, and said to her husband, “I’ll just have to do this myself.”
She quit her job and spent every waking moment at her father’s bedside for 3 weeks, until he died. The experience was searing. Earl was agitated, moaning, and hallucinating, leaving his daughter was exhausted and frantic.
Two days before he died, she called up his old primary care doctor, who made an uncompensated visit—the doctor took one look at Earl and called hospice. In the end, Earl did have a final day of peace, but his daughter is haunted by her memories of him screaming.
Earl’s story didn’t have to end this way.
Most patients with a serious illness need services from different medical institutions. But when those institutions don’t work together, patients can end up being passed back and forth while important issues go unaddressed. Collaboration and coordination across all the different institutions involved in a patient’s care need to be organized around a patient’s values, even when that patient needs attention from many different medical specialists and social services.
How could Earl’s story have ended differently?
If Earl’s assisted living institution had clinicians who could come ‘on call’ to treat simple problems; if Earl’s subspecialists could easily see each other’s assessments and discuss what Earl really needed; if Earl had a navigator who could coordinate his care across different sites of care; if Earl’s daughter had access to a clinical ‘quarterback’ who could have helped her understand what was going on; if an inpatient facility with expert symptom control had been available to Earl—he could have stayed in his assisted living facility longer, made a planned transfer to a nursing home, and another planned transfer to an inpatient hospice. Earl’s daughter could have focused on being his daughter rather than being his entire care team, wouldn’t have had to quit her job, and wouldn’t have needed treatment for depression and complicated grief for years following his death.
Here’s how we could rewrite Earl’s story:
- Every insurance plan could provide care coordinators that work across different specialists, different institutions, throughout the trajectory of illness.
- Every assisted living facility and nursing home could have clinicians available to treat simple medical issues in ways that matched patient goals without sending them reflexively to an emergency room.
- Every patient could have electronic medical records that were accessible to any clinician, so that no aspect of care would be needlessly duplicated, and their values and goals were known everywhere.
- Every family member would be offered guidance, support, and resources that were matched to the patient’s situation.
Let’s work together to improve the experience for people with serious illness.
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JudyCould we ensure that patients can always choose care that matches their values?Judy's Story
RonCould guidelines based on the best evidence reassure patients, instead of making them feel ignored?Ron's Story
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