When I saw this article on DoDLive, I wanted to see what the author had to say: “The Doctor is in – Become an Engaged Patient”. I had just finished my last physical therapy in the morning. After almost a year of care and effort on my part I was feeling pretty confident again. I had learned a new term NED, No Evidence of Disease, and after one positive report after another I wanted to see what I had done right or wrong during the last 18 months of treatment for sarcoma cancer.
Reading has always been a favorite therapy of mine! From a young child to an adult, I loved to read for pleasure, for education, for knowledge about my job, etc. When serious illnesses affected my spouse and myself as we neared retirement age I became engaged with internet information on specific care for my bride and myself. Always curious but also acting as a backup to what the doctors were doing.
It is not always easy to be a good or even great patient. Dr Gamble gives us an outline of how to be the best possible patient and get the most bang for our medical care buck. From the patient and caregiver perspective I think we should all be like a 2 year old asking a million times over,
WHY? WHY? WHY?
We did use many of the techniques/ideas Dr Gamble mentioned in his article and I would like to emphasize or add a couple from our perspective as two cancer survivors with way too much experience in care giving and and as a patient.
First, do not be in a hurry! Ask why do you recommend surgery on Monday when it is Thursday? Do we need a second opinion? Why is critical that we be done in your time frame? Slow down and breathe but listen to the doctors’ recommendations. In our cases the doctors were right and wrong. We did need to be in a hurry but we should have asked for a second opinion and gone to the larger medical facility nearby with better options for care.
Second, trust your gut! If your doctor does not answer your questions in a satisfactory manner then it may be time to find a different doctor. They will understand and certainly the medical community understands and wants you to be comfortable in your own skin. My spouse switched oncologists early in her care for breast cancer and it was the best thing we could have done! We ended up with a Navy brat doctor who we totally connected with and laughed with during the tough times. We also changed surgeons for me when we felt that we had been misinformed on care options from one doctor.
Third, keep a book! I would recommend a three ring binder if you expect this to be a long term care issue. But even if it is not, a book to keep billing information, doctor appointments, lab slips (yes you should ask for them or print them out if they are accessible). Doctors are busy and your reminder that my blood counts were low last week/month/quarter too just might provide an avenue to talk.
Fourth, take an advocate to appointments and ask questions that you have written down in advance! Let the doctor and patient exchange information and then if the questions have not all been answered the advocate can jump in with those that need to be addressed. A word of advice on advocates; they are there to support, but keep conversation patient focused. An advocate brings a different perspective and also can act as a reminder of what was said. Patients are frequently overloaded and need help remembering all the information. Take notes if necessary too!
Fifth, get to know the doctors’ staff too. They are a wealth of information and can provide follow up answers and information that the doctor may not have time to talk over personally with you in between appointments.
Sixth, find an advocacy group for support and information. I found one late in the game on Facebook and wish I had read some of the information available before surgery and treatments. I tend to like to be middle of the road when sharing and have great family support so I did not need a local group to meet with but enjoy learning from others during their journeys. Ask the doctor or social worker at the hospital if they know of an internet group or local that you can attend.
Last on my list, but certainly, there are many more ideas, Keep a Positive Outlook! A laugh is healthy, a smile even in the tough times can help get better! Look around you at the hospital waiting area, doctors’ offices, in the hospital cafeteria, at the MRI waiting room and realize how blessed you are. Give someone else a word of encouragement or just greet them and you will help them too!
You can read more articles on military medical from Col K on Our Letters to You. A Military-Family Blog from MilitaryAve...
Photo Credit: MilitaryAvenue