It's not brain surgery: People with Parkinson's need better care in the hospital

One year ago, I had brain surgery. The surgery was a success, and the hospital stay almost killed me.

I am one in a million; one of the 1 million people in the U.S. diagnosed with Parkinson’s disease (PD), a degenerative neurological disorder that currently has no cure. It is the fastest-growing neurological disorder in the world, with the prevalence expected to double by the year 2030. Around 3 to 5 percent of those with PD are diagnosed before age 40 – I count myself among this “elite” crowd diagnosed at age 39.

One of the more recent and generally effective treatments for advanced PD is DBS, or deep brain stimulation. The surgery involves drilling a hole into the skull and inserting a lead deep into the brain, which then provides electric stimulation, power for which is provided by a battery inserted into the chest. For those that the surgery works, it can provide up to 80 percent more good “on” time: this distinction of on/off refers to when a person with Parkinson’s meds are working (“on”), and the person is less affected by the cardinal symptoms of stiffness, rigidity, and tremor. “Off” times are the opposite; imagine the Tinman from the Wizard of Oz, with very little oil.

More “on” time for me would mean more bike rides with my daughter, apple picking in fall, gardening in summer, and fewer canceled plans or missed work days. In short, a better life for me and my daughter. And so I agreed to do the surgery. Once in the hospital, I experienced challenges common to people with Parkinson’s. I didn’t receive my medications on time, I received the wrong medications, I received contraindicated medications. Despite being in the hospital for a treatment for Parkinson’s disease, and there for just 30 hours, these problems in hospital care occurred.

Complications are dangerously common for hospitalized patients with PD.

I am not alone in this; 300,000 people with PD are hospitalized each year, with 1 in 4 people with PD not receiving their medications on time. This is a major contributor to the complications experienced, including increased length of stay in the hospital by up to 14 days. Contraindicated medications, like Haloperidol, a medication that decreases dopamine, can lead to devastating cascades of events that further escalate symptoms – but they commonly use these medications in the hospital. People with PD are more often discharged to a facility or rehab, more likely to be re-hospitalized, and more likely to die as compared to their age-matched peers.

For most medications, like those for blood pressure, taking a dose within an hour or two makes little difference. For people with PD, this can mean the difference between walking or not. I take medications five times a day; missing a dose or being 15 minutes late to medicate can make my foot curl up in a spasm. I can’t get across the room, and my breathing becomes shallow. My thinking is slowed, and I struggle to speak. Medication timing is essential for people with Parkinson’s.

There is also a significant economic burden, as hospital care for people with PD costs $7.19 billion in the U.S. alone. Hospitals have the incentive to care about this issue from an economic standpoint. This is because a federal insurer, Medicare won’t pay for what is considered a negative outcome. When PD patients return to the hospital soon after discharge, the hospital forfeits Medicare payments for that stay. With the average onset of PD being age 60, this applies to a significant percentage of PD patients.

Better care for hospitalized patients with PD isn’t easy, but it is possible.

Some solutions are simple, and some are more complex. Increasing the formulary offerings to include commonly prescribed medications for PD would significantly reduce the need for medication substitutions or missed doses. PD meds can be expensive, and the number of people with PD in the hospital at any one time is small. But, the cost of not having these meds on hand clearly weighs in favor of including them.

Changing electronic medical records to automatically restrict contraindicated medications or provide alerts for PD patients is another solution that would vastly reduce unnecessary complications. This is already being implemented for some platforms, but it still should expand to all EHRs and include educational materials for health care providers.

Medication timing is a more difficult challenge, as it hits up against the organizational structure of the hospital system; the current nursing shortage and level of burnout amongst health care providers is a factor. Still, from an economic and, most importantly, quality of care perspective, we must keep pursuing these solutions to make hospital stays safe for people like me. More solutions can be found in the April 2022 report from the Parkinson’s Foundation, a foundation leading the charge in this area.

My brain surgery was a success; I am grateful to be apple-picking with my daughter this year. And yet, I think of others with PD in the hospital and know we must do better.