Thirteen years after hearing his diagnosis of Stage IV Melanoma, two brain tumors and a prognosis of three to six months to live, my husband Brian remains cancer-free. If you and a loved one are facing a new diagnosis, take a deep breath and remember: there ishope. But in our journey, we learned that hope sometimes needs help, and that help often must come from the patient’s advocate, which in our case was me. If you find yourself in the role of advocating on behalf of an ill loved one, try these suggestions to help things run more smoothly.
Keep an advocate’s notebook.
When facing a medical crisis, both you and your loved one will be on emotional overload, and it becomes very difficult to remember much of anything. Give yourself a break: Write everything down! Bring along a spiral-bound notebook, small enough to carry with you at all times, and record the details of everything: every doctor’s visit, every hospital stay, every reaction to a medication, every procedure, everything that worked well and everything that didn’t.
Write down everything you hear the doctor or nursing staff say. If you don’t understand something, refer to your notes later, and you can look up further information on the Internet or ask the doctor for further explanation.
Of equal importance, when you have a question, write it in your notebook! When speaking with the doctor, it’s easy to feel intimidated, but if you jot down questions, you’ll be prepared when they turn to you and ask, “Do you have any questions?”
Be by your loved one’s side as much as possible.
An extra set of eyes and ears can make a huge difference in the care your loved one receives. With overcrowded and understaffed hospitals, the nursing staff will often welcome an advocate who is willing to run for an extra blanket or get an approved item from the nurses’ kitchen, so don’t worry about feeling like a pest.
Hospitals are breeding grounds for germs that can devastate your loved one, and when shifts change, that’s often when there’s a void in proper nursing care. Having an advocate in attendance is a wonderful backup. So put on your nurse’s hat and ask everyone who enters the hospital room—including doctors—to help prevent infections by washing their hands.
Ask questions, and lots of them!
Help insure that your loved one isn’t victimized by preventable hospital errors by asking the staff to double-check that the medicine they are giving him or her is a) the correct medication, b) for the correct person, and c) is the correct amount. Likewise, as your loved one is being wheeled away for a procedure, have the staff identify your patient, tell you where they are being taken and what procedure is being performed. If their answers don’t make sense, speak up, ask more questions and insist on seeing a supervisor until you are comfortable with the situation.
Take care of you.
As the advocate, you are the person who must speak up for your loved one and help give that person an extra edge in their fight! Also, you take on the duty of making certain your loved one receives the best possible medical care. And perhaps one of the most important things you can do in this regard is to take care of yourself. No one can spend every night by a patient’s bedside. No one can be available 24/7 to stand guard over your patient. It’s simply impossible. And as the advocate, you cannot be at your best if you are sleep-deprived, malnourished or not keeping fit. Short-term is one thing, but if you have a long road ahead as an advocate, you must take care of yourself. If your health falls by the wayside, your strength as an advocate does as well. By taking the time to take care of yourself, you will in fact, be taking better care of your loved one.
Be gentle with yourself.
Even by following all of these tips and having the very best in medical care … none of that can insure the outcome everyone hopes for. But whatever happens, you cannot blame yourself. The only guarantee of doing all of these things is that you’re giving your patient a better chance at recovery. By taking on the role of an advocate, you’re making a huge difference in the life of the person you love.
Gerri and Brian Monaghan are the authors of When a Loved One Falls Ill: How to Be an Effective Patient Advocate (Workman, 2011).