EVERYONE NEEDS ONE; DO YOU HAVE YOURS?

January 25, 2021

Mary Soper

One of the most important decisions you will make in your life can be made well before facing a medical crisis. Your decision about asking a person in your life to be your patient advocate puts the final life or death decision right into the hands of someone you choose who knows your medical wishes. This happens when you sign a Durable Power of Attorney for Health Care and appoint a patient advocate to make medical decisions on your behalf when you become temporarily or permanently unable to do so.

Taking this step to assure your life and death wishes are carried out should be viewed as an on-going process as your wishes may change as you grow older or when your personal circumstances change. Because of those changes, it is critical that you and your patient advocate continue discussions over time about the state of your health and your thinking about end of life issues. It is highly suggested that no one accept the patient advocate role on a whim, as it is possible this role can take many hours, days and weeks of the advocate’s time. Additionally, the advocate may need to be very assertive in carrying out the patient’s wishes.

I hope the medical crisis never happens and the designated patient advocate will never be called on to represent you. However, a critical situation can arise in a planned hospitalization or in an unplanned medical emergency. When that happens, the patient advocate now needs to be available and act on your behalf. The patient advocate is now “on duty” and needs to be in the hospital with you, the patient.

Let’s face it— when a person is sick, weak, in pain or in the situation of being scared, or awaiting a diagnosis, they are in no state to be asked to make important decisions about anything— their health, business or financial decisions….even what to eat. They are just too distraught to think effectively and clearly and they do not have enough energy to do either. A real issue here is the patient may look great, may be well spoken and seem quite normal. Please do not let that fool you, as inside he or she is probably trembling, feeling faint, confused and/or totally stressed out. Do not be fooled by the patient’s looks.

This is why someone is appointed to monitor the medical situation, including all procedures, tests and general activity of the medical staff. That person has been appointed to step in and make medical decisions for the patient. Ideally, the patient advocate and the patient have spent a lot of time together so the advocate knows the exact wishes of the patient.

Sometimes those decisions may counter what family members or friends think should happen. Everyone around the patient needs to understand when the Durable Power of Medical Attorney has been signed; that means the patient has signed over all his or her rights for medical decision-making to the advocate.

When the patient goes into a crisis, it may last for a day or two or for weeks. If you are the patient advocate, you need to be flexible and be available at all times. That may mean in person or via telephone so the medical folks can reach you if a decision needs to be made.

As the patient advocate, your goal should be that you are rested and alert when you arrive at the hospital. You need to develop a routine and keep to it. You are going into training. Exercising, eating healthy food, and getting enough sleep become the components of your program. Your comfort is essential, so wear relaxed fitted clothes and shoes. The hospital is not the place for high fashion.

Hospitals are a great place to walk— from the parking lot to the patient’s room, as well as the hallways, which just go on and on. You can walk, watch, learn and get your exercise. Do not forget the stairways, as they are another great way to get your heart pumping.

Both comfortable walking shoes and comfortable clothes are a must. Deep pockets are needed to carry Kleenex, money, a cell phone and paper for notes. A comfortable sweater or shawl to keep warm is also a good idea.

What about your diet?

Check to see which foods the cafeteria offers and during which hours. If the offerings are healthy, take advantage of the cafeteria’s convenience. However, paying for meals in the hospital can be expensive, so augment with food you bring with you to the hospital – yogurt, veggies, and fruit. Items can be stored in the nutrition room on your patient’s floor. Put food into a bag or container with your name on it so others will not help themselves to your goodies.

A great service many hospitals offer is a hospital hotel or hospitality suites. Located in the hospital complex, these overnight sleeping rooms can also offer a good escape for an afternoon nap away from the hospital hustle and bustle, yet you remain close to the patient’s room. A welcome hot shower or bath is a real relaxer and stress reducer. An overnight spent near the patient’s room eases some of the stress of commuting and makes you quickly available if needed. If a room at the hospital is not available, ask the information desk for a list of nearby hotels or motels that have a special hospital rate.

For the patient advocate, family members and friends of the patient, this may be the first time they have visited the hospital. They suddenly are visiting an unknown, foreign environment where they do not know what to do and feel helpless. The staff resources at the hospital are many. There may be an Office of the Patient Advocate whose staff will act as an interface between you and the hospital staff, if needed. They can be of great assistance with helping you navigate through your questions and issues.

Also available to you is the hospital social worker. Often these professionals will be available to help you make home care decisions and assist you in identifying community resources, as well as identifying funding and insurance programs available to your patient.

Social workers are often good sources for asking medically related questions that you just do not understand. They might help you better understand an issue. In addition, many of the transplant and special medical teams have social workers as team members. They are there to help you with in- and after-hospital care questions.

Many clinics and labs have a nurse specialist team member who is trained in the area of your patient’s illness or surgical procedure. This person is available to work with you and the patient to assure that all your technical questions and concerns are answered. In addition, there may be a physician’s assistant who plays that role depending on the way your doctor’s practice is organized. These are only a few of the human services that are available to you in the hospital Seek them out as needed; it will make your role as patient advocate easier and more effective.

To find more discussion about strategies for surviving the hospital stay, see The Hospital Handbook by Marquette resident, Mary Soper at www.hospitalhandbook.org.