This is a very informative article about the challenges of being hospitalized as a Parkinson's patient.
Hospital Care and Parkinson’s Disease.
By Naomi Salins, MD
Movement Disorder Fellow, Muhammad Ali Parkinson Center, Phoenix, Arizona
As is well known, living with Parkinson’s disease (PD) can be challenging on a day to day basis. A lesser know fact, though now substantiated by studies, is that PD patients are approximately one and a half times more frequently hospitalized and generally have a 2 to 14 days longer hospital stay than non-PD patients. Some of the most common reasons for emergent hospitalization can include falls, pneumonia, chest pain or infections of the urinary tract. Non-emergent hospitalization includes elective surgeries such as knee and hip replacements or spine surgery.
Hospitalization can be stressful for both PD patients and their caregivers for many reasons. The physicians caring for you in the hospital may not know a lot about PD and your regular PD neurologist may not be able to participate in your care as he/she may have not have hospital staff privileges. The nursing staff may not have much experience with PD patients and their medications. One of the major factors contributing to complications during the hospital stay is poor medication management of Parkinson’s disease. A UK based study noted that 71% of Parkinson’s disease patients missed medication dosages and drugs that acted against Parkinson’s disease symptoms (e.g. dopamine blockers) were prescribed in 41%, and administered in 22% of cases.
The good news is that there is a lot of potential for improvement in the care of the hospitalized Parkinson’s disease patient. It is important for both the patient and the caregiver to plan and to anticipate what is likely to happen. This can alleviate many of the problems encountered in the hospital.
One of the most common problems that PD patients encounter in the hospital involves medications and frequently relates to the timing of medication administration. It is important to realize that hospitals and hospital pharmacies have their own dosing schedules. For example, if a medication is written for “TID (three times a day),” the standard hospital schedule may be 8AM – 1 PM – 6 PM –or some other standard eight hour interval. Furthermore, many hospitals may have a policy where nurses have a window of time for administering medications (generally, one hour before the scheduled time to one hour after the scheduled time). This window is provided as a practical compromise because nursing staff is busy, and each nurse is involved in the care of multiple patients. Such a policy provides the nurse time to complete his/her scheduled duties, and provides flexibility in case of an emergency on the ward. As a result, PD patients will in most cases receive their medications at seemingly random times of the day.
A simple solution to this problem is to ensure that the drug schedule, with the specific times, is written into the physician’s orders. For example, if carbidopa/levodopa (Sinemet) is given four times a day, but at 7 AM – 11 AM – 3PM – 7PM, make sure that the physician taking care of you knows that it should be given at those specific times. A complete list of your medications with the correct dosage, formulation and time of administration should be brought with you. For example, carbidopa/levodopa can be prescribed as a 10/100, 25/100 or 25/250 mg tablet for the standard form, while the long-acting form (Sinemet CR®) comes in two strengths, 25/100 and 50/200 mg.
In some cases, patients may be taking medications that are not stocked in the hospital pharmacy. In such situations, the physician taking care of you in the hospital may have to prescribe substitute medications. If you want to take your own medications while in the hospital, you need to bring them from home in their original bottles and give them to the nursing staff, who will then dispense your own medications, without need for substitution, while you are hospitalized. This practice is more important if you are enrolled in an experimental drug study. In some hospitals, the physician can write an order to allow patients to take their own medicines, however, the doses and times must be written in the chart, and the pill ingestion must be supervised and documented.
In cases where oral intake is contraindicated such as in the postoperative period or in patients with severe swallowing impairment, it is important to ensure other routes of administration of drugs. This may be in the form of crushing pills and administering through a tube or using a dissolvable formulation of carbidopa/levadopa – Parcopa. It is important to ensure that dopaminergic medications such as carbidopa/levadopa are never abruptly discontinued as this may cause a potentially fatal Neuroleptic Malignant Syndrome- characterized by high fever, alteration in mentation and worsening of underlying rigidity.
Constipation is one of the common non-motor symptoms of PD and this may worsen with the use of pain medications in the hospital. Ask for agents like stool- softeners or osmotic laxatives such as Miralax if needed.
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 PD than the doctor and staff, and you may need to educate them about your situation. While you will still need to be somewhat flexible (there are many other important duties that may occupy a nurse’s time), sharing your knowledge with the staff can alleviate many problems.
Frequently, patients and their families note that their PD symptoms worsen during a hospital stay. There are several factors that may cause this. When PD patients have an infection such as pneumonia, or a urinary tract infection, they often feel like their symptoms worsen. They may have more challenges with gait and mobility or an increase in tremor. When the infection is treated and resolves, the Parkinson’s symptoms generally return to baseline. PD patients may also have more difficulty swallowing (dysphagia) with an infection. This increases the risk of aspiration and may lead to pneumonia. In these situations, a speech pathology consultation can be useful to formally assess swallowing and to make dietary recommendations.
The use of medications that block dopamine receptors during hospitalization may also explain the worsening of PD symptoms. These include antipsychotic and antinausea drugs. Common anti-nausea medications that can worsen PD include prochlorperazine (Compazine), promethazine (Phenergan), and metoclopramide (Reglan). The anti-nausea drugs Trimethobenzamide(Tigan), ondansetron(Zofran), dolasetron(Anzemet) and granisetron(Kytril) can safely be used without fear of worsening PD. Antipsychotic drugs that should.be avoided in PD include haloperidol(Haldol), risperidone(Risperdal),olanzapine (Zyprexa), and aripiprazole (Abilify). The only antipsychotics that can be used safely in PD patients are quetiapine (Seroquel) and clozapine( Clozaril).
Regardless of the cause, all PD patients should be as active as possible while in the hospital. Mobility hastens recovery and prevents skin breakdown which can occur if one stays in one position for too long. In some cases, your physician may order bed rest depending on your medical condition. In that case, physical therapy should be ordered as soon as possible. Some patients may also need rehabilitation at a rehabilitation or a nursing facility before being discharged to home.
Confusion can be a major problem for hospitalized patient and unfortunately is a common occurrence in the elderly. There are several factors that may contribute to confusion- an underlying infection, pain medications, unfamiliar environment and lack of sleep in the hospital. Confusion is also commonly seen following a surgical procedure .This may be due to the additive effects of anesthesia and medications used to treat surgical pain.
Confusion will often resolve once the underlying cause is treated- treating an infection or withdrawing the offending medications. Frequent reassurance, support and comfort may be all that is needed to assist the patient through this period. However, sometimes confusion can lead to behavioral challenges, such as aggression, refusal to take pills, and even hallucinations or delusions. In these cases, physical restraints are sometimes necessary to prevent self injury.
If a patient has psychotic symptoms, such as visual hallucinations, antipsychotics such as clozapine(Clozaril) and quetiapine (Seroquel)may be used. Occasionally, lorazepam (Ativan) or diazepam (Valium) can be helpful. These medications are only temporary and may be discontinued when the confusion resolves. It may be also be necessary to temporarily discontinue dopamine agonists(Mirapex, Requip), amantadine, pain medications, and bladder control medications( anticholinergics). Later, once patients are stable, they may be slowly titrated back onto previous doses, as tolerated.
For the PD patient undergoing a surgical procedure, local anesthesia is thought to be safer than general anesthesia. There are certain medication interactions to be considered if surgery is pursued. Drugs such as MAO-B inhibitors- rasagiline (Azilect) and selegiline (Eldepryl) can cause serious interactions with certain anesthetic agents( halothane), pain medications(Demerol, Darvon, Tramadol) and should be discontinued for a week prior to elective surgery and may be resumed once all interaction- causing pain medications are discontinued.
While the treatment of PD has now expanded to involve Deep Brain Stimulation( DBS) surgery, this may be an unfamiliar modality to many physicians and medical staff.
Many patients with DBS undergo surgery and other procedures without difficulty. However, there are a few precautionary measures to be aware of, if you have had DBS. You can only obtain a brain MRI and MRIs of all other body parts are contraindicated as this may cause over heating of the DBS electrode. The brain MRI must be performed at an experienced center with a specialized coil and with a DBS team at hand to perform the necessary checks prior to the MRI and to turn the voltage and your neurostimulator off.
The stimulators can sometimes interfere with the ability to obtain an electrocardiogram (EKG) or a brain wave test called an electroencephalogram (EEG). Always bring your portable Medtronic Access Device to turn off your stimulator in the hospital prior to these tests. Ensure that you know how to turn your stimulators on and off before going to the hospital, and before having any type of surgery. Do not assume that the medical staff will be able to turn them off for you.
If you are undergoing surgery and you have DBS, most anesthetics are safe. However, some precautions need to be taken when using electrocautery. Electrocautery stops bleeding during surgery and could potentially reset your stimulator to its factory settings. As a precaution, 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 having surgery, he/she should confirm that your stimulator is on and that the correct settings are reset following surgery. If your neurologist is not at the hospital where you are being operated, you should schedule a follow-up appointment to recheck your settings soon after you are discharged from the hospital.
It is important for you to have discussions with close family members about what you would like to have done in case of a life-threatening emergency. The medical staff should be aware of your medical wishes. You should choose an advocate who can ask questions and act as your spokesperson. If you have a living will, Health care Proxy or a health care power of attorney, these documents should be brought to the hospital and placed in your medical chart.
Finally, remember that patients and their families actually have the best chance to effect a positive change, and to improve their own hospital-based care and management. One of the first steps to ensuring high quality hospital care is education - including educating your hospital physicians and nurses on how to optimize your care during a hospital stay. Moving in this direction, the National Parkinson Foundation’s “Aware in Care” campaign is designed to help people with Parkinson’s disease get the best possible care when hospitalized and is a helpful tool to prepare for both elective and emergent hospital visits.