Although patients with ALS (PALS) may not anticipate being hospitalized as part of their treatment, there are times when other health issues may arise, requiring urgent treatment in the hospital, such as trauma. However, PALS have unique needs that most hospitals may not be familiar with. I had an unexpected hospital visit in 2013 and wanted to share with other PALS a list of things to remember on the way to the hospital, so you can be the most prepared and organized.
1) Medical History prepared ahead of time (update regularly)
- list of your current medications: dose, frequency
- any other medical illnesses
- current physical abilities/disabilities
- current physicians’ and respiratory therapists’ phone numbers
2) Medical alert bracelet – make sure it’s on!
3) Medical equipment: wheelchair, ventilator and masks, chargers for wheelchair and ventilator, augmented communication device – label with name & phone number
4) Medical insurance cards
5) Advanced Directive/Living Will (DNR papers) – especially stating desires regarding life-sustaining treatment, such as intubation, artificially administerednutrition and hydration, and end-of-life medical desires if you are permanently unable to communicate.
6) Documentation of healthcare power of attorney – designates someone to make medical decisions for you when you are unable.
7) Arrange for friends/family to advocate for your care at your bedside 24/7, if possible. Usually, patients call their nurses by using a call button, but if you are unable to move your hands, this is not an option. Having someone else available to call for your nurse will make a major difference in your care. It is human nature for people to provide better care when they know they are being watched by a loved one.
***** Most hospitals are not prepared for PALS and may not have the resources/equipment necessary for extended stays. Be reasonably assertive regarding the use of your ventilator (especially if it’s a Trilogy) because the medical staff may want to change your ventilator status when you arrive. Insist that they speak to your personal respiratory therapist before changes are made. Realize, a typical respiratory therapist or physician may not be familiar with ALS. ******
8) Undergarments/incontinence briefs - Hospitals may not provide incontinence briefs, if you need them. They prefer that you go butt-naked on top of disposable incontinence bed pads. If you prefer being more modest, bring your own.
9) Ear plugs - Hospitals are very noisy, and most patients have trouble sleeping.
10) Cell phone, charger
11) Clothes for discharge
12) Get discharged as reasonably soon as possible! Only sick people go to hospitals- the hospital is full of germs, and staying there can increase your risk for getting an infection there. Arranging for home health care can help you get discharged earlier.
13) Some equipment, such as intermittent suction, may not be available through home health care providers, so if necessary, check to see if it’s available through hospice.