By: Kelvin L. Chou, M.D., Michael S.Okun, M.D., Hubert H. Fernandez, M.D., Diane Breslow, MSW, LCSW, Joseph H. Friedman, M.D.
Most people with Parkinson's disease will need to be hospitalized at some time. Hospitalization can be stressful for various reasons. The neurologist who takes care of you and manages your Parkinson's disease medications may not have privileges at the hospital where you are admitted. The hospital physicians and nursing staff may not know a lot about PD. If you undergo surgery or other invasive medical procedures, you may not be able to take any medications until the surgery or procedure is complete.
It is important for the patient and the caregiver to plan and anticipate what is likely to happen. This article will answer five of the most frequently asked questions about hospitalization for people with Parkinson's disease.
1) When I am in the hospital, why don't I always get my medications on time?
Hospitals and hospital pharmacies have their own dosing schedules. A medication written for "TID (three times a day)" may be given at 7 AM - 3 PM - 11 PM or some other standard schedule. Many hospitals may have a policy that permits nurses to give medications at times different (generally, one hour before or after) from the scheduled time. This policy is a practical compromise because nursing staffs are busy and each nurse cares for multiple patients. Such a policy provides nurses time to complete their scheduled duties and allows flexibility in case of emergencies on the ward. As a result, it may seem that patients with Parkinson's disease receive their medications at random times.
How can such a situation be remedied? First, make sure that the drug schedule, with specific times, is written into the doctor's orders. Check that the physician knows when it should be given. Bring with you the complete list of your medications with the correct dosage. Talk with your nurse about the importance of receiving your medications on time. Explain that, without the medications, you can be immobile or uncomfortable and that the medications allow you to move around independently. You may know more about Parkinson disease than the doctor and the staff, so it is your responsibility to help them understand your situation. While you will still need to be somewhat flexible, sharing your knowledge can alleviate many problems. The staff wants patients to be well cared for during their stay.
2) Why can't I take my own medications in the hospital? Why do they substitute some medications for me?
The nursing staff must have control of your medications. This is a safety issue and is standard hospital policy.
Some patients may be taking medications that are not stocked in that hospital's pharmacy. In such situations, the hospital physician may have to prescribe substitute medications. If you want to take your own medications, bring them from home in their original bottles and give them to the nurses, who will dispense your medications. In some hospitals and outpatient surgical facilities, the doctor can write an order for patients to take their own medicines under supervision.
3) My mother has Parkinson's disease and was recently hospitalized. However, she seems to be moving much worse in the hospital than at home. Why is that?
Several explanations are possible. When patients with PD are hospitalized with an infection of some kind, whether it is the common cold, pneumonia, or a urinary tract infection, they often feel their PD symptoms are worse. Increased tremor or more difficulty walking may be noted. When the infection is treated, their symptoms generally improve.
Patients with PD who have an infection can experience more difficulty with swallowing, so that food goes down into the lungs, causing an "aspiration pneumonia," which may further impair swallowing ability. A speech pathology consultation can be useful to formally assess swallowing and make dietary recommendations. Additionally, a respiratory therapist consultation for "chest PT" may help patients mobilize the sputum and make it easier to cough.
Another possible cause of worsening symptoms is the addition of new medications. Common offenders include certain antipsychotic drugs or antinausea drugs commonly prescribed in hospital settings. Other medication may be substituted.
All patients with PD should be as active as possible in hospital. Moving around not only tones muscle, it allows faster recovery and prevents decomposition of the skin from staying in one position for too long. You may have no choice if your doctor orders you to bed rest; then, physical therapy should be ordered. Some patients may also need rehabilitation at a rehabilitation hospital or a nursing facility before being discharged home.
4) My husband has Parkinson's disease and became confused in the hospital last time he was there. How can I prevent this?
Any infection in a patient with PD can tip a patient "over the edge" mentally, or adversely affect motor function. New medications, especially for pain, frequently result in disorientation and memory problems. Lack of sleep, IV machine alarms and hallway lights can also contribute to a confusional state. Nurses regularly enter the room overnight to take vital signs, give medications, or check on a patient. For some, especially the elderly with intermittent confusion at home, being in a different and unfamiliar environment may tip them into a delirious state. The combined effects of anesthesia and medications to treat incision pain following surgery also can cause confusion.
Confusion often disappears once the underlying cause is treated, whether it is the infection or problems with medications. Frequent reassurance, support and comfort may be all that is needed. Confusion can sometimes lead to aggression, refusal to take pills, hallucinations or delusions. Physical restraints may be necessary to prevent self-injury. Some hospitals have bed or wheelchair alarms to alert nurses when patients wander; other facilities may use a sitter. If there are psychotic symptoms such as visual hallucinations, clozapine (Clozaril) and quetiapine (Seroquel) are the only antipsychotics to be used for most patients with PD.
In very severe cases of confusion with hallucinations and behavioral changes, physicians may temporarily discontinue dopamine agonists, MAO inhibitors, amantadine, benzodiazepines and pain medications. Treatment with carbidopa/levodopa and either clozapine or quetiapine will usually result in improvement. Later, patients may slowly be titrated back onto previous doses.
5) I had deep brain stimulators (DBS) placed two years ago. I now need to have knee replacement surgery. Will the doctors know how to take care of me?
Many medical professionals and hospitals still may not be familiar with this treatment. There are a few things you and your doctors should be aware of. First, if you have had DBS surgery, you can only get a MRI of the brain, and it must be done with something called a head-receive coil. You cannot get a MRI of any other part of the body, because the DBS device can become heated and damage the brain tissue during MRI. Radiologists performing a brain MRI can learn of certain precautions from the FDA. Additionally, your stimulator's voltage should be turned down to 0 before the MRI. Only a programmer experienced with MRI should supervise the procedure.
An electrocardiogram (EKG) may be important if you happen to have cardiac problems before, during or after surgery. But the stimulators may interfere with the EKG. Bring your portable Medtronic Access Device or Access Review Device (or a magnet that comes with the device) to turn off your stimulator in the hospital. Know how to turn your stimulators on and off before going to the hospital, or having any type of surgery. Similarly, if you need a brain wave test - an electroencephalogram (EEG) - or will simply be monitored during an inpatient or outpatient procedure, know how to turn that device off.
Most anesthetics are safe for individuals who've had DBS. However, some precautions need to be taken when using electrocautery, which stops bleeding during surgery and could potentially reset your stimulator to its factory settings. Only bipolar electrocautery is recommended (with grounding placed below the level of the device). If your neurologist is on staff at the hospital where you are getting surgery, ask him or her to confirm that your stimulator is on and that the correct settings are reset following surgery. Otherwise, schedule a follow-up appointment with your neurologist to recheck your settings soon after discharge from the hospital.
The above tips and scenarios should help aid minimize problems for patients with PD who are hospitalized. Some symptoms do worsen following general or local anesthesia. There are patients who have reported feeling as if they never return to their baseline. Generally, local anesthesia is thought to be safer than general anesthesia. If you have problems with thinking and memory, have them evaluated prior to surgery as they may deteriorate.
Finally, it is important to discuss with close family members what you would like done in case of a life-threatening emergency. They and the medical staff should know your medical wishes. You should choose an advocate who can ask questions and act as your spokesperson. If you have a living will or a durable health care power of attorney, those documents should be brought to the hospital and placed in the medical chart.
The checklists below are useful tools to take with you to the hospital: one for you and one for your doctor/nurse.You can assist them with lessening some of the stress of your hospital stay; this, in turn, can help other patients with PD later on.
Information Checklist for Hospital Stays
General Points to be Aware of When Entering the Hospital
- Provide a list of your medications with exact times, frequencies and dosages. Share your knowledge about PD, including on-off fluctuations and the importance of taking medications at specific time intervals.
- Bring medication in original bottles.
- Know which drugs can worsen the symptoms of PD
- Research study participants should provide information about experimental drugs. Inform the study coordinators that you are in the hospital.
- Speak up when medications are wearing off.
- Do not take medication on your own. Unless you have prearranged permission, the staff should administer all medication.
- Tell the staff if you have a (DBS) implant. Bring the access review or magnet device to turn the stimulator on and off.
- Inform your neurologist that you are in the hospital. Provide your neurologist's phone number of your neurologist to your hospital doctor.
- Be mobile, especially during prolonged stays! Walk around as much as possible. Inquire about physical therapy or occupational therapy.
If you have difficulty swallowing:
- Sit up while eating.
- Ask for a speech-swallowing therapist.
- Alert staff that your medications may need to be crushed and administered through a tube. Make sure medications are administered one hour prior to meals or feedings, especially if medications are crushed.
- There is a dissolvable form of carbidopa/levodopa called Parcopa® that can be given by placing on the tongue.
Factors that may make your symptoms worse:
- Failure to get medications at specific times and coordinated with meals.
- Certain dopamine blocking drugs can worsen symptoms. If absolutely necessary because of hallucinations or behavior, only quetiapine (Seroquel) or clozapine (Clozaril) should be used.
- Anxiety, stress, and sleep deprivation
- Urinary tract, lung, or other infections (and antibiotics)
- Provide Advance Directives: Power of attorney for health care and living will. Choose an advocate who can ask questions and act as your spokesperson. Make sure this person is aware of your medical wishes so he or she can assist in speaking for you if needed.
Information Checklist for Your Nurse and Doctor When You Enter the Hospital
- Name of your Parkinson's disease (PD) neurologist.
- Phone Number of your PD neurologist.
The following are some suggestions to make the hospitalization of this person with PD smoother:
- Parkinson's disease medications often need to be given at specific times of the day. When writing medications in the orders, please use specific times (e.g. 8AM, 11AM, etc.).
- Patients with PD should resume medications immediately following procedures, unless vomiting or severely incapacitated.
- If there is confusion, consider urinary or lung infections. Also, pain medications or benzodiazepines may be potential causes.