An advocate is defined as “a person who pleads for or on behalf of another.” If you asked most people, “Do you need such an advocate when you visit your doctor or go into the hospital?” most would say no. Most people are not used to asking for this kind of personalized help. We think we can handle this area alone.
In reality, with today’s managed care and the increased pressures placed on nurses and doctors, nearly everyone should have an advocate, especially if you need to be hospitalized.
I became acutely aware of this need when I was hospitalized a couple of years ago for a rare side effect of bromocryptine.
The person who can best act on your behalf is someone close to you who knows your condition. Preferably, it should be someone who understands how a hospital works. This can be a husband or wife, partner, friend, relative or caregiver. It also helps if the advocate has some medical knowledge or has access to such knowledge. The advocate needs to be aggressive, on top of things, and willing to question the decisions made in the care of the patient. The advocate should be prepared to ask questions like: “Why are you doing this procedure?” “Does it have risks?” “Are there alternatives?” “Can we get another opinion?” To be most helpful, the advocate needs to be with the patient or be aware of what is happening around the clock.
He or she should be available to take calls from a doctor or nurse in case of an emergency. Otherwise, important medical decisions that must be made quickly could be missed by the advocate—decisions that may have needed further discussion.
No medical condition in a hospital needs an advocate more than Parkinson’s. Parkinson’s people may not be able or willing to speak out for themselves, and they need a lot of attention and specialized care. Their medication schedule is unique and requires precision dosing. Since people with Parkinson’s are mostly over age 50, the chances are high of having or developing another illness that may require hospitalization.
They also can develop complications from their basic disease as well as serious side effects from the potent medications used. It is helpful if people with this disease and their caregivers make some advance preparations and know what to do should hospitalization be required: Become a member of Medic Alert and wear a Medic Alert bracelet. On the bracelet are persons and physicians to be notified in an emergency, what medications you are taking, and any possible allergies to medications. (Call 1.800.432.5378.) Make a legible (preferably typed) list of all the medications you are taking, including the exact time of the day you take each drug. Give this list to your partner or spouse, your advocate, and your doctors for your medical files. Also, keep a copy in your wallet or purse and be sure to keep it current. The benefit of having your drug regimen readily available in an emergency situation is obvious.
Because some hospital pharmacies may not stock certain medications, bring all your medications to the hospital in their original bottles to insure dosages are not missed.
If an elective surgical procedure is to be performed, selegiline (Eldepryl) should be stopped at least two weeks prior to surgery as it can interact adversely with the pain medication merperidine (Demerol). Also to be avoided because of potential drug interactions are the gut motility drug metoclopramide (Reglan) and the anti-nausea drug perchlorperazine (Compazine). While observing the patient in the hospital, the advocate should be alert to the possibility of a drug interaction or side effect when the patient’s medical or mental status suddenly changes. The advocate should immediately alert the attending physician of his or her suspicions.
Drug reactions are more frequent in the elderly.
Support hose should be fitted on the legs to help prevent blood clots. (The advocate may need to remind the nursing staff of this as well as getting the patient to ambulate as much as possible.) Leg and foot exercises by the patient in bed should be encouraged. Bedside physical therapy should be started immediately after surgery, especially if the patient is debilitated.
One of the most important problems for the hospitalized Parkinson’s patient is his or her medications. Unless the attending physician is a neurologist or a doctor familiar with these medications, errors in proper dispensing can occur.
Doctors write hospital medication doses using Latin abbreviations such as TID (three times a day) and QID (four times a day), and all of the medications on the medical ward are dispensed by nurses at specific intervals during the day.
People with Parkinson’s, however, take their medications at various but precise times during the day and sometimes at night. The dosing times need to be exact as failure to do so can result in periods when the patient’s disease is no longer in control, resulting in severe motor fluctuations with reduced mobility.
This is another area where an advocate can be helpful.
On arrival at the hospital, the advocate should present the patient’s medication list to the nurse in charge and explain why the drugs must be taken at specific times. The advocate may also wish to discuss the drug list with the attending physician, who may not be familiar with some of the medications used.
As careful as they try to be, doctors and nurses can sometimes make mistakes. With the introduction of managed care, nursing and physician demands have increased and only the sickest patients are admitted to the hospital. This increases the importance of an advocate.
The advocate should try to establish some rapport with the attending physicians and nurses. This means the advocate should not act like a police officer but more like a spokesperson for the patient, someone who asks questions and is looking out for your interests when you are least able to do so. If the advocate is not happy with the way things are going and questions the quality of care, he or she should discuss all concerns with the medical staff. If things don’t improve the advocate should try to change doctors or even hospitals, if this is possible.
In discussing the advocacy situation with patients and medical personnel alike, there is general agreement that the advocate plays an important role in helping insure the patient is getting the safest and most effective treatments at all times during the hospital stay.
If you or a loved one has Parkinson’s, be prepared. Appoint someone now whom you can trust to be a good advocate should hospitalization become necessary.
[See Be Prepared for related articles on hospital and medical care.]
—Dr. Cram has had Parkinson’s for 14 years. A retired dermatologist, he is the author of many scientific articles and was appointed clinical professor emeritus by the University of California, San Francisco, in 1991. He has authored the books, “The Healing Touch” and “Understanding Parkinson’s Disease, A Self- Help Guide.”