What top things can families or visitors do to improve the "care" of any patient?
1. Have someone with the patient, in the room, 24/7. This means twenty-four hours a day, seven days a week. The patient needs a guardian. Maintain that post or pass it to someone else. This is especially true in Intensive Care. A-W-O-L could mean D-E-A-D.
2. Create a Care Team Notebook. By asking friends, neighbors and family to assist in advocacy, the family's personal burden is not only reduced but the patient benefits from "new eyes." This Notebook passively "coaches" advocates in what should be observed and, as necessary, negotiated with hospital care providers. In order to stay organized and keep track of everything, this Notebook should be set up prior to or immediately upon hospital admission if the patient's stay is expected to be anything more than a short, overnight visit! In that way, whenever well-meaning and caring individuals ask what they can do, the family is ready to request help. It should include:
- Sign-up Sheets - in which a sheet of paper exists for each day with four-hour shifts. Make sure that advocates do NOT have a change in personnel at the same time there is a shift change at the hospital! This is a particularly vulnerable time for the patient and the uninterrupted presence of an healthcare monitor is critical;
- Doctor Visits - in which each care team member is asked to record every doctor visit/outcome that occurs during their shift;
- Procedures - in which each care team member is asked to record any procedures done and the expected and actual outcomes;
- Notes - in which each care team member is asked to record any observations during their shift;
- Questions - in which each care team member lists any questions they have for medical personnel for future shifts;
- Outside the Hospitals Tasks and Chores - in which are listed things that need to be done to keep the patient's family and household functioning, divided into categories such as personal care for the patient, transportation, household chores, childcare, pet care, etc.;
- Legal Documents - including a copy of the Durable Medical Power of Attorney and Living Will (Advanced Directives); and
- Emergency Contact Information - for the family, the advocate(s), the trusted medical advisor(s) and all key medical personnel.
For downloadable forms, visit www.hospitalstayhandbook.com
3. Ask the patient if s/he has executed a Durable Medical Power of Attorney and a Living Will, also called Healthcare Directives in some states. If not, help the patient complete them. If you need copies of these documents, go to the Legal or Patient Advocacy office in the hospital to secure the forms. No one wants to believe anything bad could happen to them, the very issue that confronted the spouse and parents of Terri Schiavo whose case went to the Supreme Court because she lacked these documents. Regardless of what course of action you believe should have occurred, the fact remains that this painful experience could have been totally avoided had she executed these two documents. With these documents in place, everyone including the medical community, will know the desires of the patient. This action spares the patient's family from the agony of one of life's greatest and most difficult decisions. Place copies of each document in the Care Team Notebook and give a copy to the legal department of the hospital.