Be Intelligent
No one expects you to take a crash medical school course after being diagnosed with an illness. It’s not necessary that you understand anatomy and physiology or cell biology. It is important that you know how your own body works. What are the unique features of your body? What illnesses and injuries have you had? What medications are you allergic to? How do you respond to medication? It’s also important that you have at least a basic understanding of your diagnosis. You should know the actual diagnosis and all its particulars. If your specific disease has stages, phases or degrees, know where you are on the continuum. Do enough research so that you aren’t buried in information on your first doctor’s visit.

Be Curious
Curiosity may have killed the cat, but it could save your life. Today’s healthcare culture is about increasing the numbers of patients seen by doctors while reducing the reimbursement schedules and insurers increasing malpractice insurance premiums. Curiosity allows you to feel prepared for your consults. It shows the doctor that you are part of the team and not simply a bystander or a victim. Curiosity may even get the doctor to think twice about a test, a diagnosis or a treatment. It tells the doctor that you’re not simply a tourist in this process, but you are truly the CEO of your own health. Curiosity also keeps the medical team connected to you even when you’re not present. They will think about questions or research answers about protocols and outcome studies so the next time you come in for a visit they are just as prepared as you.

Be Assertive
Western culture has created a power imbalance between the doctor and patient. It’s not uncommon for doctors to be put on pedestals, unfortunately that means many fall off. When meeting with your healthcare team make clear your expectations. If you feel a particular test needs to be done, don’t take a simple “no” based on the insurance company declining the request. It’s fine to ask the doctor or hospital to appeal the decision and requesting the doctor to provide additional information if necessary to make sure the test is authorized. If you have specific side effects that you don’t feel are being addressed make a firm request of your provider. Suffering should be eliminated at every possible juncture of your treatment process. This is no time to be a wallflower. Your presence is important, so make sure your voice, your concerns and your problems are addressed.

Becoming your own healthcare advocate provides you with a sense of ownership. It gives you the presence of mind to partner with your healthcare team. You’re empowered to ask questions at every step of the process. Your inner strength translates to improved immune function. We all need an advocate so either step up and take that role or team up with someone who has the experience in that position, but don’t be led down a path without having a voice.

Being an advocate for a senior requires more than making doctor appointments and helping to ensure the senior makes it to the appointment. That is the simple part. Some seniors may not want to press doctors regarding their care because they are afraid they will be punished by not getting the care they need.  Doctors may be so busy that they will sometimes miss crucial issues on the charts in front of them or may accept non-committal answers from a senior scared to death of hospitals and ending up in a nursing home and not look deeper for the underlying cause of health issues.

This is written not to disparage the health care professionals who care for seniors. However it helps the doctor to know someone is with the senior who cares enough to know their medical history and to ask questions about problems they are experiencing. Of course, the trick is to leave the dignity of the senior intact by first letting them provide as much information to the doctor as they are willing or able to supply and to ask as many questions as occur to them.

Important Point #1: If you, as an advocate, have POA over health care, you should keep copies handy, even scanned into your computer (both at home and at work), so that if you end up in an emergency room situation, you can print a copy before leaving home or work to provide the hospital. Health care professionals are bound by privacy laws that restrict their ability to discuss a patient’s health with anyone but the patient, spouse, or the person the patient has designated by power of attorney over health care matters. Having a copy of a POA over Health Care in your possession to place in the medical records which designates you as having POA ensures that all health care professionals who work with your parent/in-law/friend will answer your questions about the patient’s care even if they have to tell you that they do not yet know the answer to your questions.

Important Point #2: If you end up taking a senior to the emergency room as I did my father-in-law, be prepared for a long stay. As the advocate for the patient, you will need to be on hand for the history taking process to point out previous hospitalizations, recent illnesses and to do so for each nurse/doctor/lab tech who comes to the patient’s bed. All the bottles of medications that the patient takes should be gathered and kept with you in a plastic bag for entering into hospital records. So have someone find you a comfortable chair near the patient’s bed and do not switch off with family members until all the tests are done and the doctor finally arrives with a diagnosis. After the attending physician tells you what the diagnosis is, if all the symptoms are not addressed, ask him/her questions. You may need those answers to make informed decisions. You could be there for a long time.

Important Point #3: If the patient is admitted to the hospital from the emergency room, make sure that the hospital staff knows you are to be informed of any change in the status or care of the senior and be sure to put a telephone number in the records where you can be reached 24/7. If there are to be any changes in rooms or any invasive procedures done, especially at bedside, you want to be informed.

(I was horrified to arrive at the hospital one morning to find that my mother was placed in a room with two other patients overnight while preparing for a colonoscopy, meaning she had to walk past the other patients all night to go to and from the bathroom as the detergent she was given to drink cleaned out her system. In addition, the staff planned on having the colonoscopy performed bedside with only a curtain between them and the other patients’ beds. I made sure my mother was moved to a room that had no other patients in it while the procedure was performed. But she needed me as an advocate to take care of her dignity.)

Not all the duties should fall on the family member who has POA. At this point, our family emails back and forth about post hospital care, how Dad is responding to physical therapy, who will take Dad for routine labs (not quite as crucial as the results, unless the technician finds something immediately that becomes an emergency situation) and what to do about Dad’s 91st birthday. We, as a family, are quick to update one another on health issues related to the senior members of the family.

Important Point #4: For serious and critical illnesses or for long distance caregivers, there are professional advocates who can be consulted. Many can be found simply by doing an internet search using the words senior advocacy.

If you are a member of the sandwich generation, looking for further advice, I suggest doing an internet search for articles by Gail Sheehy on caregiving.  The most important point she makes in her articles is that caregivers need to take care of themselves. It will not help either you or your loved ones if you are constantly drained emotionally and physically. Learn to pace yourself and to enjoy life’s milestones for yourself and for the seniors you love. Right now, I am looking forward to my mother’s 80th birthday and hoping to have her to cherish for many years to come. Live long, Mom, and prosper.