Dr. Kelvin Chou, MD, Associate Clinical Professor of Neurology, Director, Deep Brain Stimulation Clinic and Co-Director, Movement Disorder Clinic, University of Michigan Medical Center; and Member, MPF Professional Advisory Board. Anonymous Family. Deborah M. Orloff, MPH, BSN, RN, Chief Executive Officer, Michigan Parkinson Foundation.
Over the years, one of the major concerns we at the Michigan Parkinson Foundation continue to hear is the fear people with Parkinson's have regarding hospitalization. A traumatic experience in itself, the inability of those hospitalized to receive Parkinson medications as prescribed makes this experience even more difficult. We have read articles in other newsletters about difficulties encountered and even the need to avoid emergency rooms. Others, on a more positive note, focus on how to handle the hospital situation.
Dr. Kelvin Chou (University of Michigan), and his colleagues wrote an article which was featured in NPF's Parkinson's Report as well as the Messenger, (Fall 2008, pp. 6-8), answering 5 frequent questions about hospitalization. Since then, the Michigan Parkinson Foundation's Professional Advisory Board sanctioned a 4- page form created by the Parkinson's Resources of Oregon and Oregon Health & Sciences University ("Critical Information for Caring for the Parkinson's Patient") which we are encouraging people to complete prior to their hospitalization so they can explain to hospital staff what their needs are. Yet, the problem continues.
The National Parkinson Foundation commissioned neurologists at their Centers of Excellence to review articles and studies relating to the effect of hospitalization on people with PD. Dr. Chou was part of this effort and the results were published in the journal, Parkinsonism and Related Disorders (Aminoff, et. al, Management of the hospitalized patient with Parkinson's disease: Current state of the field and need for guidelines. 2011, pp. 139-145). A White Paper was written, focusing on the need for education of hospital staff about the care of the person with PD while hospitalized.
In this article, we report the success of one family in working with hospital staff to care for the hospitalized person with PD. As the story unfolds, Dr. Chou comments on each aspect, from preparation for the emergency room to what happens during the hospitalization. It is the intent of the Michigan Parkinson Foundation to work towards furthering the knowledge base of health professionals to enable the person with Parkinson's to receive optimal care, regardless of the setting.
Mr. and Mrs. X were very satisfied with their care during a brief hospital stay at a local hospital. It could have turned into a discouraging situation had they not been able to work out a compromise with health professionals with whom they dealt.
Mrs. X has had PD for over 20 years and is, as she puts it, very meticulous about her medication schedule. She needs to maintain a very strict every 3-hour schedule while awake, or else she goes into an "off period" (becomes very slow and rigid) and consequently she has carefully constructed a comprehensive method of insuring that she takes her medication on time.
During the summer, she was treated on an outpatient basis for a bladder infection. Despite treatment, symptoms persisted and were severe enough to result in her having to go to the emergency room. Her husband accompanied her. What is very striking is their preparation to go to the ER. The system she has developed helps her to feel a measure of control over managing her condition which at times can be overwhelming.
Mrs. X has a form on her computer where she enters all of the pertinent information about her medications and conditions that are important. She carries a copy of this in her wallet and also places it in a small "cosmetic bag." At right (next page) is what her record looks like. Note that there are additional instructions at the bottom.
In this cosmetic bag, she also has a 2-day supply of all of her medications, plus one extra dose. Because she needs to take her medications frequently, she uses a pill container that is actually intended to hold a week's supply, but she places one dose in each compartment for the entire day. There is an extra compartment where she places a back-up dose - just in case. Her pill containers are filled every other week, allowing her to have a 2-week supply. Mrs. X carries a 2 day supply with her at all times.
In order for her to ensure she takes her medication on time, she uses a watch with an alarm which she sets to go off every 3 hours. Just in case, she sets it 10 minutes early to allow for a window. In her cosmetic bag, she also has a form that she checks off each time she takes her medications.
Commentary: The preparation of Mrs. X is to be commended. Such preparation is important not only for the emergency room, but for clinic visits as well. Being organized helps the physician focus on the patient and the patient's complaints, rather than spending time figuring out which medications the patient takes. Knowing your medications or having a current list also decreases the likelihood of mistakes.
Once at the ER, her husband explained to the staff that she needed to take her medications on time, showing them her medication system. The staff allowed him to help administer the pills to her. Mrs. X had various tests and it was determined that she needed to be hospitalized for IV therapy treatment.
Commentary: Based on the review of the medical literature, it is clear that patients with PD are admitted more often to hospitals and frequently have longer hospital stays than the general population. However, what is most interesting is that PD symptoms by themselves are not common reasons for hospitalization. In fact, the most common reasons for hospital admission among PD patients are pneumonia or other infections (such as urinary tract infections), elective procedures (such as a knee replacement or hip replacement), cardiac problems (such as heart attacks), gastrointestinal disorders (such as nausea, vomiting and diarrhea), and lightheadedness with standing causing fainting spells, strokes, and changes in thinking and memory. PD is often treated by a neurologist in the clinic, so hospital staff are often unfamiliar with PD symptoms and PD medications. You will be surprised how much more you know about your disease than the people you interact with in the hospital. Be prepared to re-educate the staff as you are transferred from the emergency room to your hospital room.
Once admitted to her hospital room, accompanied by her husband, Mrs. X was interviewed by a nurse. The couple explained that she had a strict schedule of several medications which had to be taken at specific times, and described the timing of the medications. They found out that one of the medications was not on the formulary, and the hospital couldn't provide it. Additionally, the nurse informed them that, because of staffing, it would be difficult to maintain such a strict administration schedule.
Commentary: These are common problems encountered in the hospital. Often, PD medication schedules may be changed to match that of other required medications (such as antibiotics) or to better accommodate a nursing schedule. This is often because nurses have to take care of many patients, and making medication times similar between patients allows for more efficient administration. There is also often a one hour window before and after a scheduled timing of medication that is allowed in hospitals. This flexibility is there just in case there is an emergency that the nurse or hospital staff has to address. Finally, hospitals may not stock your brand of medications. All of these changes may result in greater risk for wearing off for the PD patient. If you need a strict administration schedule or if you need your own brand of medication, some hospitals may allow you to keep your own medications at the bedside as long as it is drawn exactly from what was written on the bottle.
Anxious about the whole process, Mr. and Mrs. X asked if it would be allowable for her to keep her own medications at the bedside. This was not allowed. Again, they stressed that Mrs. X had to take her medications precisely, explaining the anxiety this caused and the consequences of on-off symptoms.
The nurse called in her supervisor, who said she understood what they were saying, "but the rules won't allow for us to deliver your medications as precisely as you want." However, she did call in the Pharmacy supervisor. Again, Mr. & Mrs. X discussed the dilemma.
After some discussion, the staff nurse made a suggestion that solved the problem. Mrs. X's medications would be brought in and stored by the staff. The nursing staff brought Mrs. X each dose one hour before the medications were due. Mrs. X could see the medications and this allayed any anxiety she had. She took her medications at the precise time she needed them, with help from her husband if necessary, and informed nurse when she had taken the pills.
This strategy gave both the X's and the hospital staff a zone of comfort. Mr. X concluded that any person with PD admitted to a hospital needs another person to advocate for him/her and who understands the fear of being without timely medications.
Commentary: Although the hospital would not let Mrs. X keep her own medications at the bedside, she did not give up and continued to try and find a solution that would work for her and the hospital staff. The lesson here is Hard work now = Less work later. The person with PD knows when medications wear out and often becomes compulsive about taking medication. Hospital staff, on the other hand, do not realize that many people with PD fear that they will never get out of the "off" time. Putting in the effort initially to educate staff and get what you want (Hard work now) will result in a less anxious stay with little off time (Less work later). Convince nurses that giving medications to you on a strict schedule (Hard work now for them) will result in fewer calls for assistance because of immobility or anxiety later (Less work later for them). Persevere and find a compromise. This allows everyone to win. Try to apply the Hard work now = Less work later principle the next time you need to be hospitalized and hopefully you too will have a successful outcome.