By HOOMAN AZMI MD, FAANS
When a patient enters a hospital either in an elective or more urgent manner, the main focus of the care team is to address the chief complaint. Other diagnoses, while important, may not receive as much attention. While this may not affect patients in most circumstances, it can be very impactful in patients who have Parkinson’s disease (PD). Studies have demonstrated that when patients with Parkinson’s disease enter the hospital, they are more susceptible to developing hospital related complications. Patients with Parkinson’s disease have a higher length of stay (LOS) than those entering the hospital for the same diagnosis without PD and can develop complications such as dysphagia, confusion and falls, impacting their outcomes and increasing their LOS.
Awareness about PD and its treatment and implications thereof are critical in ensuring reduced risks for this patient population. People with PD are very dependent on their medication, and timing of this medication is critical to maintaining good symptomatic control. In the outpatient setting, the main goal of medication management for these patients is to provide as much ON time as possible while minimizing side effects of the medications, such as dyskinesia. ON time describes a period of time when the medications are working and symptoms are controlled. Patients with advanced PD may have considerable difficulty with motor fluctuations if they transition from the ON state to an OFF state when the medication effect has worn off and they are symptomatic. The fine tuning of the medication regimen is pain-staking and often the result of multiple office visits and telephone calls to arrive at the best schedule customized for the patient. This can often result in seemingly unconventional timings (sometimes on the quarter after the hour) and at time q3 or even q2 intervals. Deviations from these regimens, even as little as 15 minutes delays, can have deleterious effects on patients with PD, as detailed above.
When patients with PD enter the hospital, attention is seldom paid to the exact timing of medication administration. If a patient takes a particular medication six times daily, ordering the medication six times daily in the hospital defaults to standard timings that often are different from the patients’ own regimen, causing timing errors. Almost 75% of PD patients who enter the hospital have delays in their medications and more than 60% of these patients can have complications during their hospitalization because of these delays.
Other factors also contribute to worse outcomes in PD patients. Many of the PD medications are not routinely carried in hospitals. Replacing a patient’s medication with seemingly similar alternatives that may be available at the hospital is not recommended, and indeed can be as detrimental as delays or omissions in medications. In addition, several drugs used particularly in the hospitals are contraindicated in PD patients. Some anti-emetics such as Compazine and Reglan and several antipsychotics have dopamine antagonist properties which worsen PD symptoms, and indeed administration of these medications can increase risk of hospital acquired complications for patients with PD and increase their lengths of stay.
The challenge that in-hospital care teams face in tackling these issues is compounded by the nature of why PD patients come to the hospital. The majority of PD patients who enter the hospital do so for non-PD related issues. In fact, over 85 percent of patients come in for conditions completely unrelated to their Parkinson’s disease, such as pneumonia, heart attack, gall stones and elective surgeries.2 Parkinson’s is often somewhere lost in the problem list, and these patients are admitted throughout the hospital based on their presenting issues. Therefore, any effort to address the suboptimal care of patients with PD has to be hospital-wide and not unit based.
There is hope, however, for addressing these shortcomings. Studies have shown that education can improve awareness for these issues. A hospital wide education program which addresses Parkinson’s disease, its management, and the importance of timing of medications and contraindicated medications for this patient population is the cornerstone of any effort to improve the care of PD patients. This educational campaign needs to be hospital wide and continuous.
Other important interventions can also help bridge these gaps. Patient identification is crucial, as most PD patients enter the hospital for non-PD related complaints and PD can be overlooked. Clearly identifying patients with PD in the electronic medical record helps prevent the patients from being lost in the shuffle and alerts the care team to initiate any protocols or care plans that may be available specifically for Parkinson’s disease.
Ensuring that all or as many PD medications as possible are on formulary is very important. While these medications are expensive and may not be as commonly used as antihypertensive agents or hyperglycemics, substitution of the medication for an alternative which may be less expensive and is on the hospital formulary is not appropriate. The efficacy will be different for the patients, and giving the patient an alternative to what they are taking may be as detrimental as delays or omissions of their medications.
Working with different services to eliminate contraindicated medications from routine order sets for PD patients will also help advance this cause greatly. Education is a critical part of any protocol. Many different services come in contact with these patients and contraindicated mediations can be ordered. Direct discussions with the hospitalist groups, ER, and anesthesiologists, among other departments, are critical to ensure reduction in these errors.
Probably the most important point is ensuring that PD meds are ordered in a custom fashion and that general hospital medication schedule defaults are avoided. It is critical that the staff is educated to the importance of timing of medications and that these medications are not just ordered as four times or six times daily but that they are ordered according to the actual time that the patient takes the medicine at home. Most EMRs have custom medication timing options which should be encouraged.
We have instituted the above efforts at our own institution, and over time this has helped reduce the length of stay and re-admissions for Patients with PD. More importantly, it has enabled us to better care for this vulnerable patient population.
It is important to note that The Parkinson’s Foundation provides an excellent resource for patients with PD who are going to the hospital. The Aware in Care program is a valuable tool that has been designed for patients but is also quite useful for healthcare professionals. The kit provides information that patients can share with their health care team which enumerates the importance of medication timing, avoidance of contraindicated medications, and educational points that address the knowledge gaps that are present for the care of PD patients.
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I was diagnosed with Parkinson’s disease nearly 4 years ago, at 51. I had a stooped posture, tremors, muscle stiffness, sleeplessness, slow movement. I was placed on Sinemet for 7 months and then Sifrol and Rotigotine was introduced which replaced the Sinemet but I had to stop due to side effects. Last year, I started on Parkinsons disease herbal treatment from Madida Herbal Clinic, this natural herbal treatment totally reversed my Parkinsons disease.
The mention of delirium magnifies the unpredictable complexities of a health care plan for a person’s PD by one full order of magnitude, all by itself. If the PD person is also afflicted with a epilepsy, Well-Being becomes nearly impossible.
We need this awareness. Thanks. Also remember that with Parkinsons or Lewy body or Alzheimers it is sometimes very difficult to tell delirium from hallucinations and to sometimes, accordingly, treat very differently. Changes in the environment cause delirium all the time.
Among the various forms of progressive dementia, Parkinson’s Disease must represent one of the most “heart-felt.” In spite of the progressive limits occurring for a person’s reflective-cognition capabilities, the will to survive seems to “peek-through” the fog for its own expression of survival. Against all the limits of movement and communication that progressively occur, each day seems to produce an opportunity to battle the increasingly difficult onslaught of disruptive processes that reduce the opportunity to express their Well-Being. The ability to peak through the fog surrounding a PD person is usually the most heroic attribute of their healthcare.
This drawn out survival process becomes ameliorated by the use of multiple medications that interact uniquely for each PD person. The underlying fragile character of the PD person’s baseline homeostasis requires a level of healthcare diligence that evolves uniquely for each affected person. Furthermore, we have absolutely no means to meaningfully assess the operating characteristics of a PD person’s baseline homeostasis. So, we are left with closely monitoring vital signs that use 1820 technology for measuring blood pressure and breathing: the stethoscope. Healthcare largely operates within the Time Domain for its research paradigm. Meanwhile, the systems engineering Realm of Knowledge operates within the Frequency Domain for its research paradigm. If you know what a Fourier transform represents, then you know what I mean.
Back to hospital admissions for a PD person, the role for establishing a care plan is often left to a person with little or no access to the actual care plan. There is usually a high level of individualization that occurs outside of the prescriptions on record at one or more pharmacies. This evolves based on trial and error by the “care team.” Underlying this processes, there is no data to confirm the evolving fragile state of the person’s baseline homeostasis. As a result, there is no means to meaningfully collaborate about the need to coordinate the various elements of an over-all care plan. The monitoring tool is especially important with a hospital admission. The people who survive their PD with the highest level of sustained beneficence usually have a family caregiver who is involved almost daily, especially during a hospital admission. They become very skilled at communicating their level of diligence.
Since @1850-1900, the crisis events for a person’s HEALTH have become increasingly centered within institutional surroundings. The ability of a Family to become engaged with the realities of a person’s reflective-cognition capabilities, innate temperament and baseline homeostasis during fundamental disruptive processes has become seriously discounted by institutional rules at all sorts of levels. From birth until death, the millennial role of a person’s Family, Extended Family and micro-neighborhood networks have become disengaged if not totally absent (viz, homelessness). As a result, the communities that DO NOT maintain an agricultural heritage are unable to support the active character of each person’s constellation of dedicated Family Networks.
RECOGNIZE: maternal mortality (worsening for 30 years), childhood obesity, adolescent suicide/homicide, substance abuse, opioid mortality, mass shootings, mid-life depression/disability, and declining national longevity (4 years in a row).
DO: family mealtimes at least 5 times a week.
THINK: read Neera K. Badhwar’s book titled WELL-BEING published in 2014 as written by a philosopher beginning with the precepts of Aristotle. It is the subject’s gold-standard.