April 28, 2014

Hospitalization for People with Parkinson's: Dangers and Precautions

In the summer of 2011, I was hospitalized for a few days after a car crash. At the time, I didn’t know that people with Parkinson’s face particular risks when they’re in the hospital. Though there were some complications, everything finally worked out OK for me. Others with PD have not been so lucky.

A story in the New York Times’ excellent "The New Old Old Age" blog told the scary tale of Roger Anderson, 69 and a person with Parkinson’s (PWP). In 2006, he entered the hospital for what he and his wife thought would be fairly routine surgery.

To begin with, Mrs. Anderson couldn’t help the hospital staff understand how important it was for her husband to receive his PD med – Sinemet – at precise intervals. As I have learned so well from personal experience, “off times” – when one pill is wearing off and the next hasn’t kicked in yet – present the greatest risks to PWPs.

That’s when dopamine levels in the brain are lowest, and PWPs are most likely to have mobility problems, to experience freezing of gait (FOG) or uncontrolled tremblings and movements (dyskinesia). At these times, the risk of falling – and serious injury – is greatest.

The National Parkinson Foundation (NPF) reports that 75% of all PWPs do not get their medications on time while they're in the hospital. And of all those who didn't receive their meds on time while in the hospital, 61% had serious complications as a result. Those stats are worrisome enough, but then there's this: PWPs are hospitalized about 50% more often than others. 

Mrs. Anderson didn’t have much luck inserting her husband’s medication requirements into the already tightly controlled hospital schedule, and regulations then in place prevented her from providing his medications on her own.

But – as it turned out -- the meds were only the beginning of the Andersons’ problems. Roger had problems with the anesthesia, and his operation incision became infected. His time away from home, which they expected would be only a few days, lasted three months. During that nightmarish stretch, Roger developed delirium, bounced between hospitals and rehab facilities, lost 60 pounds, and fell.

Mrs. Anderson said, “People were telling me, ‘He’s never going to come home.’”

But he did, finally. His disease has progressed since that experience eight years ago, but he’s apparently doing pretty well now.

Complex Medication Issues
Everyone confronts dangers during hospital stays, but PWPs risk more. They’re already dealing with a degenerative neurological disease and thus compromised to begin with; they face some new medical challenge, and – typically – they’re older, and more likely to experience complications and less able to recover quickly.

Dr. Michael Okun, a University of Florida neurologist and national medical director of the National Parkinson Foundation, said, “Patients [with Parkinson’s] were telling us these horrendous stories. Even in good hospitals. Even in my own hospital.”

The dopamine-replacing medication must be taken as often as every two hours, and the schedule requires a kind of precision that hospital regimens can’t often provide. Said Okum, “These patients aren’t getting their meds on time, and they’re not getting the right meds.”

Beware: Compazine, Phenergan, and Especially Haldol
Others drugs commonly administered at hospitals actually block the dopamine PWPs need. They include Compazine and Phenergan (for nausea), Reglan (to stimulate the bowels after surgery) and – worst of all, according to Okum -- Haldol (to reduce confusion). Said Okum, “Haldol is the worst drug you can give a Parkinson’s patient. It can be a real mess.”

Okum thinks the solution starts with educating hospital staffs about Parkinson’s. “It’s slow going to effect change in the health care system, and in the meantime a lot of people are getting hurt,” he said.

On its "Aware in Care" webpage, the National Parkinson Foundation lists the reasons why hospitalizations are especially dangerous for PWPs:
  • Lack of understanding of Parkinson’s disease – symptoms, treatment, etc. even in the very best hospitals in the U.S.
  • Lack of awareness about the critical importance of Parkinson’s medication timing.
  • Lack of awareness that many common medications for pain, nausea, depression, and psychosis are unsafe for people with Parkinson’s.
  • Hospital pharmacies that do not stock the full array of Parkinson’s medications.
  • Lack of awareness that poorly-managed Parkinson’s might result in mental confusion and other serious symptoms.
"Aware in Care" Bag for People with PD
To reduce risks for PWPs in the hospital, the NPF offers free "Aware in Care" bags into which patients put all their meds.

Inside the bag, there's a bracelet for patients to wear:

A medical alert -- with emergency numbers -- for patients to complete and put in their wallet:

A medication form which patients can complete on their home computer, print several copies, and place in the bag:

PD fact sheets patients can share with hospital staff. They can suggest that one be placed on their chart:

"I Have Parkinson's" reminder slips which patients can share with everyone on their care team:

"Thank You" cards patients can give to staffers who have given them excellent care:

There's also a magnet patients can use to display their medication forms by their beds:

Anyone with PD who has an upcoming hospital stay can order a free NPF "Aware in Care" bag, along with a free "Hospital Action Plan" with a click here.

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In 2010, NIH's PubMed reviewed 30 years of data about hospitalizations for PWPs. Results of that study -- "Management of the hospitalized patient with Parkinson's disease: current state of the field and need for guidelines" -- were published in 2011.

Here's PubMed's condensed abstract from the study:
  • OBJECTIVE:  To review the literature and to identify practice gaps in the management of the hospitalized Parkinson's disease (PD) patient.
  • BACKGROUND:  Patients with PD are admitted to hospitals at higher rates, and frequently have longer hospital stays than the general population. Little is known about outpatient interventions that might reduce the need for hospitalization and also reduce hospital-related complications.
  • METHODS:  A literature review was performed on PubMed about hospitalization and PD between 1970 and 2010. In addition, in press peer-reviewed papers or published abstracts known to the authors were included. Information was reviewed by a National Parkinson Foundation workgroup and a narrative review article was generated.
  • RESULTS:  Motor disturbances in PD are believed to be a causal factor in the higher rates of admissions and complications. However, other conditions are commonly recorded as the primary reason for hospitalization including motor complications, reduced mobility, lack of compliance, inappropriate use of neuroleptics, falls, fractures, pneumonia, and other important medical problems. There are many relevant issues related to hospitalization in PD. Medications, dosages and specific dosage schedules are critical. Staff training regarding medications and medication management may help to avoid complications, particularly those related to reduced mobility, and aspiration pneumonia. Treatment of infections and a return to early mobility is also critical to management.
  • CONCLUSIONS:  Educational programs, recommendations, and guidelines are needed to better train interdisciplinary teams in the management of the PD patient. These initiatives have the potential for both cost savings and improved outcomes from a preventative and a hospital management standpoint.
The NPF was closely involved in the review. Its "Aware in Care" bag and "Hospital Action Plan" appear to be useful outcomes of the investigation.

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