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I a forwarding this at the request of Joy Graham who has her very capable hands full at the moment. Dennis. ---------- > Date: Sunday, May 04, 1997 21:51:41 > From: Bob & Joy Graham > To: Dennis Greene > Subject: re: safe hospitalisation > > Dennis could you please pass this on to the List on my behalf. > Thanks > Joy Graham > > For those who asked for it, here is part of the information which we have, > in the past, provided to our West Aust. members on Safe Hospitalisation... > I heard about this document from the care list. Dr Mills, was happy to > let me use it, so I am sure he won't mind it going on the List. > > Hello Mitchell, and how are you? > > SAFE HOSPITALISATION FOR PARKINSON'S PATIENTS > By Dr Mitchell Mills > > Dr Mitchell Mills is well qualified to write on the problems of the > hospitalised Parkinson patient. He is a retired thoracic surgeon and he is > the Carepartner for his wife who has had PD for fifteen years. His > interest in the problems of hospitalised Parkinson's patients began during > his surgical practice when he realised that Parkinson's patients were > expected to "forget about" their disease when hospitalised for another > problem. He says that whilst this was simply due to ignorance of the > disease, time pressures and under staffing, such a situation is > unacceptable, given that it can lead to devastating consequences and even > death. Both Dr Mills and his wife are active in the American Parkinson's > Disease Association. This article was sent to me via the Internet. Ed. > > All hospitalised patients are at risk for medical injury. This risk is > probably increased as nursing staff 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 if further increased because they are more > dependent on a high quality of care. They have an underlying, chronic, > neurological 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 in 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 put 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 hospitalised. 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 recognise and deal with that. Again, you may be > considered "uncooperative". > > 5. Certain drugs given commonly to hospitalised 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. > > 6. You can expect some mental changes while hospitalised which may > blunt your ability to care for your Parkinson's disease as well as you > usually do. > > 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. > > * 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. PD 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 anaesthesia and surgery, and that it be > resumed as quickly as possible thereafter. > > * Whenever possible, discuss your Parkinson's disease management with your > doctors before you are hospitalised. Be sure to ask how it impacts on the > risks and > results of treatment. Arrange for your usual physician to consult with your > doctors and ask that he/she arrange for neurological care while you are in the > hospital. > > * Designate, in writing, a person to make treatment decisions for you if you > are > unable to do so. This person should be readily available during > hospitalisation. > Copies of your declaration should be given to your doctors and to the charge > nurse to be put on your chart. You may add to your declaration how you wish > to > be treated in case of a terminal illness. This should include how you feel > about alternate routes of feeding (i.e. feeding tubes, intravenous lines). > You > should, at least, discuss these matters with the person whom you designate > as your > alternate decision maker. > > * Provide the charge nurse with a written summary about your Parkinson's > disease 1 > including what happens if you are over or under medicated. Stress what > changes > they are likely to observe if you are taken off medications. Include your > most troublesome problems present even when you are optimally medicated. > > * 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. > > > >