Hospitals should be a place of healing, that is the traditional understanding. But what happens when what you need from the hospital is directly in opposition to what they can provide?
Take for example the experience of Parkinson’s Disease patients. When they enter the hospital for any reason, they are twice as likely to die. They are at risk of being given contraindicated medications. They will likely stay longer and have poorer outcomes than other people admitted for the same reason but without Parkinson’s Disease. Well, you might say, they’re probably older and frail from having Parkinson’s Disease, right? No, in fact, that does not account for the discrepancy in the numbers. What does explain it is the fact that Parkinson's patients can't get their meds on time in the hospital. What? you ask. What’s the big deal? That seems too easy. Just give them their meds already!
That was my request when in the hospital recently, when undergoing Deep Brain Stimulation (DBS) surgery for Parkinson’s Disease. I am 47 years old with Young Onset Parkinson’s Disease. Deep Brain stimulation is an incredibly effective, safe, and relatively routine procedure to help people with advanced Parkinson's to manage their motor fluctuations. It involves inserting an electrode into the brain to stimulate the area that is not producing dopamine, an essential neurotransmitter. My surgery went incredibly well, my surgeon was fantastic, and the prognosis is good.
Two years ago I needed an emergency appendectomy. I experienced firsthand the challenges of being a person with PD in the hospital. So I tried my best to be prepared this time, and I tried to make sure that I had taken all the recommended precautions.
After surgery however, getting my meds was still a saga. The orders weren’t correct in the computer, the hospital didn’t carry the particular drug I take as part of their standard formulary, the nursing staff missed several doses, and the pharmacy doubted the med orders. Despite having brought in my own medications, and asking the staff to check them in with the pharmacy, the pharmacy hadn’t done so. My med times not only were missed twice by the nursing staff, but they were also 45 minutes late and with the wrong medications.
What’s the big deal? you ask. 45 minutes doesn’t seem long! I take my blood pressure meds every day but 45 minutes either way wouldn’t make a difference. Are you just being picky?
The difference with Parkinson’s Disease is 15 minutes late equates to being unable to move more than a few steps. My toes curl under, my foot cramps, and I can only hobble. 15 minutes early can mean I am experiencing crippling involuntary movements (dyskinesias) for 2-3 hours. The timing can also change depending on a number of factors. I may need to take my meds early, or late, but I need them within minutes in order to keep the debilitating symptoms like slowness and stiffness at bay. And for other folks, it may mean confusion, inability to communicate, and even delirium. Delirium is often treated with Haldol, a medication which further reduces dopamine and can lead to a rapid downward spiral for people with PD.
Studies show that people with PD experience longer hospital stays, greater mortality, and higher rates of rehospitalization. This is for any type of hospital stay, not just related to PD. This is a national problem in need of broad scoping solutions that address the multilayered systemic problems, from medication administration to pharmacy formulary, from surgery protocols to ambulation recommendations. This cannot be left up to the individual PD patient to advocate for themselves.
Luckily, in preparation for DBS, I had brought a secret supply of my own medications and took them as needed, without the nurses knowing. This was absolutely a plan C or D, and not a viable solution. I would much prefer to work with my care team and be up front about what I'm taking. I want to feel like I'm being taken care of, and not be at odds with the staff. I want to work together with my care team to recover. I don’t want to lie to my healthcare providers. I want to be able to trust that I will get the care I need when recovering from brain surgery, or any other procedure.
The design of hospital systems is to maximize efficiency, and at times this seems directly in opposition to what PD patients need when in the hospital. This is a low incidence but high cost problem, not only in terms of hospital costs via longer length of stay and medication errors, but also the human cost in terms of decreased quality of life and reduced functionality,
There are some simple but elegant solutions that can be brought to bear on this problem.
Although low volume, the potential cost savings of having the correct meds for PD patients is huge when considering the risk of costs - additional days in the hospital denied reimbursement by insurance companies, worse outcomes, and potentially harmful or deadly medication errors.
The Aware in Care initiative spearheaded by the Parkinson’s Foundation, and Dr. Hooman Azmi and colleagues affiliated with Hackensack University Medical Center is one one organization working on this issue. Azmi’s book, Parkinson’s Disease for the Hospitalist: Managing the complex care of a vulnerable population, details the issue and possible solutions.
There are some wonderful people working on making this situation better for people with Parkinson’s Disease but we would love you to join us!
If you’d like to share your story, have YOPD and have experienced issues with hospital stays during the last five years, please consider filling out this survey, a research project on YOPD and hospitalization:
If you’re interested in doing more, please get in touch with the Women’s Parkinson’s Project and mention this post by filling our contact form: https://www.womensparkinsonsproject.com/contact-us