Advance Survival Planning for the Medically Fragile

By Jane-Alexandra Krehbiel BS ES RN

Many years ago, when I first became a nurse, a nurse was actually required to structure a written plan for a patient who was discharged to home with a chronic illness. It was part of discharge planning. Somewhere along the road as we put away our caps, departed from personalized care plans, and went to discharge check sheets, and cookie cutter computerized discharge directions, we stopped telling most patients and families what should be in their home for their newly discharged loved one.

When a couple brings home a new infant, they have a breast pump if they are breast feeding, clothing, supplies, bottles and formula, but when someone else comes home, they may not know what items they should have. The first thing everyone should have is a Medical three ring binder. In it, place several clear xerox copies of the patients insurance and Medicare cards. There should also be a sheet with a listing of all of the medications they are taking. Make a sheet listing the primary physician, and the consulting physicians, your loved one has seen. Include names, addresses, contact phone numbers, and after hours phone numbers and fax numbers if you have them. A few doctors will provide e-mail addresses also. Then make a sheet which gives a brief medical history overview, which might look like this:

Tilly Jones is a 74 year old lady who has had Type II diabetes for 12 years.

She has recently been discharged from Happy Heart Hospital following repair

of a fractured hip. Her meds and her physicians are listed on the following sheets.

She is ALLERGIC TO Penicillin, Sulfa Drugs, and Tomatoes. She has no known

cardiac, kidney or other issues at this time.

Families can get very creative with these notebooks. Some people include a Medical Directive or Living Will. Certainly a listing of family members, and list of next of kin with home phone and cell phone numbers would be a good idea. This notebook can be the difference between life and death either in an ambulance, or when one gets to a hospital. Many an error has been averted by handing the medical staff a notebook such as this.

Next, the family of a medically fragile person, whether they are a child or an adult needs to have a listing of special need items. These are going to vary based entirely on the diagnosis and the physicians orders for this patient. A child with severe asthma is going to need an epipen, whereas a diabetic child on insulin must have ketodiastix, a glucometer, extra strips, and a glucagon kit. List out the items you need in advance, and tell your physician that you are gathering a “Go Bag” for the medically fragile person. Most physicians will provide supplemental prescriptions for an emergency kit, although insurance companies may not always pay for these. Still, an addition $35. for something now, could be priceless in terms of preparations in the future. Keep in mind that elderly people with medical problems are going to n need preparations just as much as young people are. Don’t forget some foods that can be used in keeping with their special needs.

My first focus is always a “Go Bag”. First plan as if your medically fragile loved one would have to leave your home in a hurry. A Go Bag should be light and easily located and is personalized to one medically fragile individual. It should contain all the needed medical supplies for your loved one, should you need to leave in a short period. Many people, buy their newest meds and supplies, restock their Go Bag and then use the supplies that were in the Go Bag in order to rotate their supplies. This is a good plan. The Go Bag should be quickly checked about every 30 days. A good rule of thumb is that you should have anything your family member used medically in the last six months, unless they are now allergic or it was discontinued for some good reason. Your own family First Aid Kit is a different kit entirely.

Secondly, when the Go Bag is formulated, you should locate a clean storage area for your loved one, and gather additional supplies. If grandma uses four bottles of hydrogen peroxide per week for wound care, then you should stock sixteen of them, in the event that you could not get out for some reason to get them, or the stores were closed, or the trucks were stopped etc. Be sure to rotate your stock. Peroxide, for example, stays fresh best in a cool dry place.

Next, you need to plan how you would shelter in place with a medically fragile family member. Try to amass two months worth of supplies for your medically fragile family member. If you have a medically fragile child, make sure that you stock ipecac also. If you have a closet you could shelve for medical supplies, then this would be ideal, but many families have to use plastic underbed boxes for their medical supplies other than medications. Be careful here. If you are responsible for a medically fragile parent, and have small children, be sure to take great pains to keep your children away from potentially hazardous medications. Even iron pills or gummy bear vitamins, (that incidentally a lot of people use for elderly parents) can be fatal to children in amounts in excess of those ordered. Ibuprofen in excessive amounts can also be fatal.

Set aside time for each family member over 13 to become CPR certified, in adult, child and infant. Stop at a medical supply house to get whatever protective masks (Laerdal masks) that you think you may need, should you be uncomfortable with mouth to mouth resuscitation, particularly for an elderly relative.

The fact remains that advance planning prior to ice storm, blizzard, earthquake, terrorist event, etc. can be the difference between the loss of a medically fragile family member, and the survival of one.