If hospitalization and/or surgery become necessary for those with ME/CFS, ensure that patient care needs are stated and agreed upon by hospital staff prior to, or upon admission. Have them in writing and get the patient care manager and attending physician to sign them. And be ready to have their eyeballs roll.
Remember: the hospital is no place for sick people. Only go to hospital if absolutely necessary. It is loud, busy, chemical-laden, offers a diet high in carbs/sugars/perservatives and unfortunately, is full of professionals who are likely to call in a psychiatrist to deal with you. (Remember the word 'refuse' if there's anything offered that you don't want - it's your right). There are also infections running rampant like MRSA and VRE, which are very difficult to treat and easy to catch because staff care more about protecting themselves than protecting you.
There are some wonderful nurses, PSWs, OTs, PTs and allied health care staff around. But, this page is not about them. Many times certain patient rights are ignored. Staff come into patient rooms several times nightly, sometimes claiming it as theirs to use as a place to gossip or make phone calls on their cell phones. If you complain, your treatment might worsen. Some staff are psychologically or physically abusive to patients.
Nurses and PSWs are unionized, while their managers usually are not. It is common to complain to managers, listen to their "thank-you-very-much-for-coming-to-me-with-this-concern" lip-service, and have nothing change in your care. The union rules, and if nurses and PSWs don't feel like behaving, nothing can make them.
Patient well-being is not the priority in hospitals; keeping them alive is. Making sure vitals are checked at said times, that all patients eat and defecate, and that patients are covered thoroughly on the way to the shower room are top priorities of basic care. This obsession for privacy only manifests if you have an inch of bare flesh showing (there are cameras in the halls) but not if there are nineteen visitors at once in your room. This lack of care for patient well-being can lead to many procedures that they feel you can handle, yet that ultimately may lead to a crash. If you say you're not up for a shower, be prepared to be dragged in anyways, or to have a nurse baby-talk at you: 'oh, I don't think a little water will hurt you ... why are you afraid of water?'.
There is a general hierarchy in Canada that hospitals and their care falls under. They include the following facilities, from best to worst: private nursing homes, acute care hospitals, not-for-profit rehab hospitals, not-for-profit nursing homes, for-profit rehab hospitals, for-profit nursing homes. In the US, everyone knows the difference between a private hospital and a government run one; a for-profit rehab hospital in Canada would generally fall between the two. Different units of the same hospital may also differ greatly in the care they provide; the psych, surgery and/or palliative care wards will be much worse off than the neurological, maternity or oncology units in looks and in the quality of care they provide. Consider which units get the most money donated to them, and you will have some idea of what the care on the unit will be like.
It is a sad fact that many people with ME/CFS and other poorly understood illlnesses often choose to stay away from the hospital just when they need it the most because of their past unendurable experiences there, knowing they risk death if they stay home. There is something fundamentally wrong with a health care system that forces patients to make this choice.
Personally, the rehab hospital almost killed me. I left in an ambulance to save my life.
If you are admitted to hospital, have as many family members and friends around as possible. Staff will (unfairly) think higher of you as a patient and be more careful with your care. Family and friends are also the unpaid backbone of the health care system; they make the staffs' job easier by doing the little things like feeding, washing your face and sometimes showering you. Plus, it has been shown that patients with family and friends around tend to do better, for many reasons besides just the company.
Please review the following PDFs to determine what you need if admitted to hospital, then ensure everyone else involved in your care knows, too. Keep copies handy. Protect yourself, because I assure you that the hospital won't if you just blindly trust in them, especially without educating them first.
Hospital Protocol Guidelines for Multiple Chemical Sensitivity
Permission was granted to share this hospital protocol. Please adjust it for your individual needs and have your family doctor put a copy in your medical record. See: http://www.lassentech.com/eimcspro.html
MERCY MEDICAL CENTER PROCESS STANDARD MULTIPLE CHEMICAL SENSITIVITY PROTOCOL APPROVED FOR: All Patients with Multiple Chemical Sensitivities
DISTRIBUTED TO: All Patient Care Areas, Admitting, Environmental Services, Nutritional Services and Governance/Administrative Policy/Procedure Manual
PURPOSE To outline the management of patients with multiple chemical sensitivities. Patient needs include (but are not be limited to) the following guidelines, depending on concurrent diagnoses:
SUPPORTIVE DATA Patients with a history of allergy to chemicals found in perfume, pesticides, detergents, household cleaners, etc. may have multiple chemical sensitivities.
All supplies used to clean patient room (where the patient is to be housed) and in the care of the patient should be chemical free.
Staff caring for the patient should not wear scented products.
Do not use air fresheners or furniture polish in patient room.
Use only non-toxic cleaning products: Vinegar, Bon AMI, Borax, baking soda, Planet Solutions cleaning solution.
Use only I00% cotton blankets, towels, sheets.
Patient allergy is marked in demographics on patient's permanent record; this comes up on re-admission.
Patient may have multiple food allergies.
Rinse all equipment before taking into patient room.
KIT CONTENTS - FOR PATIENT CARE AREA'S USE AND EMERGENCY ROOM
Yellow arm band. Butterfly cotton batting
Suction kit (without gloves). Stopcock
Non-latex surgical gloves. Paper Tape
Non-latex powder-free exam gloves. Butterfly for IV access
Planet Solution cleaning solution. Velcro Tourniquet/ BP cuff
(Planet Solution catalogue included in kit) . Ivory liquid soap for staff
IV solution 5% Dextrose in water 1000 cc. 3M Mask R-95 Dust Mist mask
Porcelain oxygen mask, tygon tubing. Normal Saline 0.9% 1000 (glass
5% Electrolyte Travert Solution 1000 cc (glass bottle)
2 Yellow Multiple Chemical Sensitivity allergy signs
Soda Bicarbonate solution 500 cc (IV solutions are order from Baxter)
Codan IV administration kit (ordered from Codan Pharmaceuticals 1-800-332-6326)
Sterile cotton sheets, towels, blankets, wash cloths, cotton pillows, gowns washed with non-perfumed detergent and no fabric softener.
Supplies for MCS patients may be ordered from this foundation: (catalog included in MCS kit) American Environmental Health Foundation 1-800-428-2343
KIT CONTENTS - FOR OBOR, OR, OPSC, NICU Each unit has a latex-free cart specific to their area to which this protocol is added (refer to Unit Specific Manual).
SPECIAL PROCEDURES, 30 MIN TO 1 HR/DAY
Listen to the patient. Reassure the patient that you understand they are chemically sensitive and that you will work with them in providing care.
Use all methods to minimize exposure of the patient to exhaust fumes. Avoid idling the ambulance. Turn off the motor when loading and unloading the patient.
Refrain from wearing perfumes, cologne, or smoking while on duty.
Remove the patient from hostile environment. If they are having a reaction, move them out into fresh air.
Use the patient's own medical equipment whenever possible.
Wear non-latex gloves.
Avoid the use of IV and medications, if at all possible, until patient is transported to their destination, unless in a life-threatening situation.
Immediately contact MCS patient's physician for special instructions and review any medical alert identification the patient may be wearing or carrying, as well as any existing hospital computer records on the patient. No treatments, IVs, tests, or medications should be administered to a MCS patient without prior approval of patient's private physician, unless a life-threatening emergency exists.
Immediately isolate MCS patient from all other patients and visitors.
Patient should not be wait in the waiting room.
Patient should be placed in Prompt Care Room One ASAP (remove latex products from the room and request Environmental Services to clean with approved cleaner for that purpose prior to placing patient in the room, if at all possible).
Obtain MCS kit from Central Supply for caring for this patient.
PRIOR TO ADMISSION OF PATIENT TO ROOM
PATIENT SERVICES SUPERVISOR:
Notify Environmental Services and Pharmacy of MCS and place the patient in private room.
Remove all latex products and cubicle and window curtains from the patient room.
Clean the patient room with Planet Solutions cleaning solution. Another recommended product is Solutions-4-You. http://www.solutions-4-you.com. Do not use products with chemicals or wear latex gloves to clean the room. Hang cotton cubicle curtains. Make bed with cotton bed linen that is washed in non-perfumed detergent and no fabric softener.
Install new sharps container in room.
Place air filter (HEPA Plus activated carbon liner) in patient room and turn on. (Obtain filter from Central Supply with the MCS kit).
Use glass bottles for IV solutions.
Do not use any substitutions or generic drugs for the MCS patient without checking with the physician.
Patients with MCS may react to dyes, preservatives, and artificial sweeteners and flavorings, cornstarch, or any other excipient.
Capsules may be safer than tablet form.
Monitor MCS patient medications by listing MCS patient under heading "Highly Allergic Code"
Assess all patients on admission to the hospital for allergies, and have Epinephrine available.
Patient who has MCS should be in a private room; follow procedure for preparing room
Obtain MCS kit from Central Supply.
Place yellow arm band on patient; mark with Multiple Chemical Sensitivity
Place Multiple Chemical Sensitivity sign on patient's bed and outside door.
Place Multiple Chemical Sensitivity under "isolation" on the Patient Profile OC (prompt F4); this will print on the order sheet on receiving department.
Patient should be provided distilled drinking water in a glass container.
Notify Nutritional Services of the patient's special needs. Patient needs to be interviewed by Nutritional Services as soon as possible.
Ask the patient to describe all beneficial procedures that have helped reduce the severity of reactions in the past. List this information in the medical record. Patient suggestions may include items such as administering oxygen, drinking water, eating fresh fruit, and other tolerated foods. Drinking a solution of baking soda and water (one teaspoon to 1/2 cup water). Showering or shampooing.
RD: DIET MODIFICATION, NUTRITIONAL SERVICES:
Patient with MCS will require a special diet. The diet should include no processed foods of any kind, including instant oatmeal, instant mashed potatoes, and other prepackaged mixes (such as gravies, sauces and flavor packets). Use no dyes, preservatives, artificial flavorings, artificial sweeteners, or MSG. Provide patient with chlorine-free distilled water, decaffeinated coffees (which have not been processed with chemicals), and lactose-free milk. Food and drink should be provided in glass containers. Allow patient to select plain, non-processed foods from meats, vegetables, fruit, and grain list.
On physician orders, permit patient to supply his/her own tolerated food products and dietary supplements.
Retain patient's dietary requirements in the patient's medical record for future reference.
All hospital employees and visitors are to check with the patient's nurse prior to entering patient's room.
Patient should be isolated from other patients and their visitors at all times. In the event that the patient must be transported elsewhere in the hospital, the patient should wear a R-95 mask.
Staff caring for the patient should not wear perfumed products, hair spray, or perfume.
Hospital personnel are to wash their hands with unscented or ivory soap and apply non-latex gloves prior to touching the patient.
No live plants/flowers are permitted in the patient's room (if indicated)
No latex balloons
Alcohol swabs should not be used on the patient. Food grade alcohol is OK.
Remove tops of vials before drawing up medications.
Do not inject through any latex ports.
Patient should bathe using products they are familiar with that do not cause a reaction.
Petroleum products, i.e. K-Y jelly should not be used.
Patients with MCS going to surgery alert Anesthesia well ahead of time in order for the physician to discuss what anesthesia and pain control will be used.
TEACHING: DISEASE PROCESS
If patient has not been aware of Multiple Chemical Sensitivities prior to admit, alert them to the fact that they may be allergic to many things.
If patient would like more information about Multiple Chemical Sensitivities, they may contact the following:
American Environmental Health Foundation 1-800-428-2343 (Supplies for MCS patients may be ordered from this foundation). Catalog included in MCS kit.
Document Multiple Chemical Sensitivity in the patient's medical record, in the front of the chart, PCP, PCS, MAR, and computer profile.
Record implementation/modification/discontinuation of protocol in PCP/PFS.
Record evaluation of effectiveness of care in the EOSS on the NPR as related to the nursing diagnosis/patient outcome.
* Healthier Hospitals, Toni Temple, Ohio Network for the Chemically Injured, 1996. * The Environmental Illness Syndrome, Sherry A. Rogers, M.D., Syracuse, N.Y. 1997. * Human Ecology Research Foundation, 8345 Walnut Hill Lane, Dallas, TX 7523 1.
APPROVAL: Clinical Standards Development Committee 10/99; Hospital Standards of Clinical Practice Committee AUTHOR Cathy Carl, RN, BS, CIC. REVIEWED; REVISED; CONSULTING PHYSICIAN: Jo Tillman M.D. 11/5/99 3:25 PM