Safe Hospitalization

Safe Hospitalization for Parkinsons Patients

There has been enough request for the ASCII version of this file that I decided to send it to the entire list. I have added a few paragraphs to it (eg. about preparing liquid levodopa)

All hospitalized patients are at risk for medical injury. This risk is probably increasing as nursing staffs are reduced to save money and as quality of care is considered less important than the cost of care.

For Parkinson's patients, the risk is further increased because they are very dependent on a high quality of care. They have an underlying, chronic neurologic disease that increases both the difficulty of their care and the chance of complications. Consider the following facts:

1. The physician who usually manages your Parkinson's may not be available in the hospital which you enter.
2. The physicians whom you encounter may not be at all knowledgeable about Parkinson's disease.
3. The nursing staff on your hospital ward is unlikely to have much knowledge or experience about Parkinson's disease. Even worse, because the nurses are overworked, in a hurry and focused on other kinds of problems, they will probably not be motivated to learn about the disease in time to benefit your care. And, still worse, when complications develop due to improper management of Parkinson's disease, they will probably blame you for being "uncooperative".
4. You may be forced on a "drug holiday" because your medication program interferes with house rules about the administration of medications or because you are unable to take oral medications due to the condition for which you were hospitalized. As you are well aware, this, added to the stress of your illness, can rapidly result in you being a very different patient than you were when you entered the hospital, now under the care of persons unable to recognize and deal with that. Again, you may be considered "uncooperative".
5. Certain drugs given commonly to hospitalized patients for symptom relief may be need to be reduced or omitted in Parkinson's disease. Your doctors and nurses may be unaware of this (see below for more details).
6. You can expect some mental changes while hospitalized which may blunt your ability to care for your Parkinson's disease as well as you usually do. At the same time, your family may not be permitted to violate "visiting hours" to be at your bedside to help.
7. You may be discharged from the hospital too quickly due to insurance regulations. This may not allow time enough for you to recover the same level of independent living you enjoyed when you entered the hospital. It also may not allow enough time for helpful consultations such as physical therapy, occupational therapy, etc.

As frightening as these facts are, they are certainly not impossible to overcome! The following are some guidelines for doing just that. I have omitted specific recommendations for management of Parkinson's disease which are best decided by your neurologist.

Whenever possible, discuss your Parkinson's disease management with all of your doctors before you are hospitalized. Be sure to ask how it impacts on the risks and results of treatment. Arrange for your neurologist to consult with your other doctors and ask that he/she arrange for neurological care while you are in the hospital.

Please consult your attorney for details about these matters.

Arrange for a family member to be present in your room at least 16 hours each day. In some instances, this may need to be 24 hours a day. Parkinson's disease is the perfect excuse to get around those usual "visiting hours". A cot to allow a family member to sleep in the room can usually be made available. Intensive care wards make these sorts of arrangements more difficult but not impossible.

Present your medication program, in writing, on arrival. Ask that it be placed on the chart and copied by a doctor into the "doctors orders". Ask the attending doctor in your case (the doctor under whose name you are admitted) to order that you can have your medications at the bedside to be administered on time by you or your family member, keeping track of it on a bedside chart. Insist that changes in the dosages and/or timing of your medications be made only for medical reasons, not for the convenience of the nursing unit. Resist statements to the effect that "it won't matter". Ask that your medication program be continued right up to the time of any planned anesthesia and surgery, and that it be resumed as quickly as possible thereafter. Beware of arbitrary statements by admitting personnel (such as "absolutely nothing by mouth" after midnight) which could turn out not to be in your best interest. Provide the charge nurse with a written summary about your Parkinson's disease including what happens if you are over or under medicated. Stress what changes they are likely to observe if you are taken off medications.

Keep a bedside log (or have the family do so). Take the names of all persons who care for you and record them in the log along with any significant occurrences.

Question all treatments and medications until you or your surrogate are satisfied they are necessary and correct. If you are not satisfied, ask to speak to the nursing supervisor or your doctor. If the result is still not satisfactory, seek out the hospital administrator on call or the "ombudsman" which many hospitals have.

If your mobility is severely limited, ask for "anti-embolism" stockings and question whether or not a blood thinner is necessary to help prevent blood clots in the legs and lungs.

Avoid drugs which can themselves cause Parkinson's-like symptoms. These include the phenothiazines (e.g. Compazine) often given for nausea and vomiting, haloperidol (Haldol) commonly used for agitation and hallucination, and metoclopramide (Reglan) which is used to improve the motility of the gastrointestinal tract. Before accepting any drug for the relief of nausea, vomiting, anxiety or agitation, you or your family need to ask if the drug is compatible with Parkinson's disease or can cause Parkinson's-like symptoms.

Drugs used for high blood pressure (hypertension) must be used with care because, in a Parkinson's patient, they can cause a dangerously low blood pressure. Your blood pressure needs to be checked with you lying down and standing and the dose of the drug adjusted accordingly by your doctor.

If you take selegilene (Eldepryl), there are possible severe adverse reactions when combined with the common pain reliever meperidine (Demerol) and with certain antidepressants (e.g. Prozac and Zoloft).

Your neurologist is familiar with all of the above potential drug problems and should be consulted about them.

Diazepam (Valium) (in small doses) and diphenhydramine (Benadryl) seem to be safe sedative drugs for Parkinson's patients.

Consultations with Pulmonary Therapy, Physical Therapy, Occupational Therapy, Dietitian, Speech Therapy, and Social Services are often indicated and will be most beneficial if begun early. Don't hesitate to suggest them to your doctors.

A dietitian consult immediately on admission may be necessary if you require a low protein diet for breakfast and lunch and a high protein dinner. As a general rule, self selection of your diet for each meal is the best way to be happy with your hospital food.

If the surgery you are having precludes taking anything by mouth for a significant time, you can make liquid Sinemet which can be sipped as needed or put down a stomach tube (taken off of suction for 30 min). The total daily dose is mixed in a small amount of warm water containing 2 grams of ascorbic acid powder (vitamin C). Then enough water is added to make one liter. It is taken in divided doses during the next 24 hours.

If mental status changes do occur (confusion, disorientation, hallucination), please realize that, frightening as they are, they are nearly always temporary. They clear up completely and you get back to baseline as soon as you get better. Be sure your family knows this too. They are often the most upset about such changes. If the family is present in the room, it will often avoid the necessity for restraints on your arms and legs. Even so, side rails will be put up on the sides of the bed at night. Again, family members can help to manage these if you need to get out of bed in a hurry.

With regard to anesthesia, fortunately, there are very few special problems in Parkinson's patients. Nevertheless, it is important to ask to speak to your anesthesiologist pre- operatively (or have the family do so). This will assure that he/she is aware of the details of your Parkinson's disease which could modify some of the decisions made during and after the anesthetic. Examples would be pre-anesthetic medication, when to consider local anesthesia with safe sedation and when to consider the use of a respirator for a time after the operation. As mentioned previously, the anesthesiologist will be happiest if you are optimally medicated for your Parkinson's disease right up to the time of surgery. He/she may have to call the admitting office to let them know that it is all right for you to take Parkinson's medications in sips of water right up to the time of surgery. Your neurologist and/or your anesthesiologist may want you to stop taking Eldepryl several weeks prior to surgery so that you can take narcotics such as Demerol safely. Discuss this well ahead of planned surgery.

Discharge planning discussions should begin soon after admission. A planning conference should sometimes be held prior to discharge. A family member (care giver) should attend this conference. I know that some of the above may seem to be an unnecessarily paranoid approach to this subject. However, It is based on over 30 years of experience with hospitalized patients as well as a review if the current literature. I feel that it can be carried out with a fair but firm attitude that will achieve the necessary goals without alienating the care givers unduly. The bottom line is: it is just not safe to sit back and assume that all will be done correctly. It is necessary that we be strong advocates for ourselves and our loved ones.

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As a medical nurse who is still actively involved in my profession, I thought it might help list members to understand the 'other side' of the dilemmas Bob experienced with his wife's hospitalization and perhaps offer some suggestions as to how they can be avoided.

Bob wrote: One year ago Aug 7 Cecily had a stroke while in the hospital for pneumonia. The neuro ( not our neuro) called in, immediately decided she needed more sinemet. She said that every neuro had different ideas about dosage of PD medicines. Being in a state of shock I didn't realize what she was saying. After it sunk in I eventually got our MD to change it back. I also told him that under no circumstances was that person to be allowed near any of my family - get a witch doctor first.

In teaching hospitals (where interns and residents follow patients) such situations commonly occur. To avoid this kind of encounter, request that your physician stipulate that you be 'non-teaching' - thus preventing interns and residents from over-seeing your care. The down-side to such a stipulation is that in emergency situations, attention to your problem might not be as immediate as possible. Your physician must be called for any orders in regard to your case. If he's indisposed (at a wedding, funeral, on the golf-course or out of town) getting timely medical care might present some difficulty.

If you decide that you wish to remain a 'teaching patient', then *clearly* express that under no circumstances may your PD meds be changed without direct consultation with your neurologist (this was Bob's solutionin his wife's case).

In Feb she was in the hospital again and although I had given the nurse a writtten program of her medications, I caught them giving her a wrong dosage at a wrong time. Asking around I found that they had a different regimen than the one I had given. When as and if she is ever in the hospital - any hospital - again you can bet your bottom dollar I will see that they do what they are supposed to - not what THEY think they should.

Hospital medication schedules are often very different from the regimen patients have established for themselves. Although we would love to accomodate patients, it is often difficult to administer medications on 'patient time' as opposed to 'hospital time.'. To give Annie meds at 6-10-2-6 and Jim meds at 8-12-4-8 and Tom meds at 9-1-5-9 would dictate that the only function a nurse could carry out would be to pass medications to patient to the exclusion of other medical care.

Therefore, if you have a medication schedule that must remain constant, request that your physician write orders that specify that you may keep your medications at the bedside so that you can take them whenever you need them. If you are a care-giver whose charge is not of sound mind and thus cannot be trusted to take their medications on their own ask that your doctor write specific times when medications *must* be administered.

Hospitals are very busy places. On my clinical division where cardiac and respiratory problems are the major focus, emergencies occur every day. Frequently medication schedules are thrown off because of those crises. We try very hard to insure that our patients be managed in an optimally therapeutic environment, but sometimes our best efforts fail. It is important that all contingencies in regard to medication administration be anticipated by staff and patients so that rapid recovery can occur and the patient can be discharged back to their normal environment. We need your help for that to be accomplished.

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Do not crush Mrs. F---s'
Sinemet CR tablet. Also, please check that she has swallowed each medication.
Thank you.

Before the sign went up, I had discovered a nurse had been crushing Sinemet CR and placing it in applesauce (because mother was groggy and they were trying to help her swallow). Also, on two days, I had found slightly dissolved tablets (drugs other than Sinemet) under her bed.

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I learned the same thing when Mom broke her hip. Even at the hospital I had to help regulate her meds schedule. They had no idea about the timing of meds with meals. The same thing happened at the nursing home she's in for rehab. I stayed there every day for a week making sure that everybody who was responsible for administering her meds knew when she should have and what NOT to take it with. When I heard one of the nurses offer her a "shake" with her pill, I asked what it was. The "shake" is a protein drink and is only for patients who don't eat very well and is given on doctor's orders. Well, after that I tried to make sure that anyone giving Mom her pill knew not to give it with the protein drink. Unfortunately, they're short handed and have had temps come in, one of whom gave Mom her pill and started to give her some of the protein drink to wash it down. Luckily, I was there that morning and caught it before she drank it. She's on minimum Carbidopa-Levidopa anyway to try to control hallucinations and confusion. After that I made sure they put it on the card they all use to record the medications given.

This has turned out longer than I meant for it to be and the point is that you should ask questions. Someone at a meeting I was at Sunday said "the only dumb question is the one not asked." Don't ever take it for granted that doctors & nurses know everything about PD. They don't. And you know your PWP better than anyone, so speak up, ask questions, and tell them what they need to know, because some times you are the only one who can. Mother can talk, but most times her voice is weak and she really couldn't tell them what they needed to know.