A Sunday Reflection
By Dorthy A. Webster
The last time I was hospitalized, I was awakened at 2:00 a.m. and told that I was being prepared for a dangerous surgical procedure I had already rejected as a course of action. I was lucky that my daughter was in the room to intervene. I was horrified, frightened, dismayed, and angry when I realized how narrowly I had avoided potential disaster—and that I was at their mercy. Of course, everyone on the medical staff was apologetic and embarrassed when the clerical error was discovered. I accepted the apologies, but I became mistrustful of the entire process because their mistake could have resulted in serious complications had I not had an advocate with me.
I have had a lot of time during the weeks and months of my recovery to reflect on how, once upon a time, obtaining proper medical care seemed much simpler. I recall Dr. Hale, my general practitioner (GP) puppet master, who oversaw everything and was concerned about my overall welfare. This was a time when the neighborhood or community GP was the doctor from whom all medical wisdom flowed for every member of the family. He held office hours, visited patients in the hospital, and made house calls—sometimes all on the same day. He answered the phone in the middle of the night and knew who you were. He treated everything from broken limbs and nosebleeds to appendicitis and cancer. He delivered babies, and both the newborn and the mother became his patients. He prescribed regimens of care for all of it, and the “doctor’s orders” were typically followed without question because you trusted him completely. The best GPs epitomized the essence of patient advocacy.
Reliance on general practitioners declined as technology improved and medical specializations increased. There is now a specialist for every organ and body part, each with its own set of instructions and procedures. Indeed, the general practice model has been superseded by the concept of family practice, which has emerged as its own specialized area of medicine. This means that whatever benefit might once have been derived from the GP as patient advocate is no longer available.
Additionally, the growth of pharmaceuticals has paralleled the expansion of medical services. There are constant television commercials describing the benefits of myriad therapies, alongside lengthy descriptions of the risks of using them. Social media platforms such as TikTok, Instagram, and Facebook are other sources of information, using algorithms to select products specific to individuals and push them onto their devices. Remedies are available for ailments and conditions we didn’t know existed—but now worry we might have.
Today, the complicated, confusing world of medicine requires us to understand the diagnosis, proposed cure, and prognosis whenever the need for care occurs. We must self-advocate by asking questions, insisting on answers, and being able to comprehend the information we’ve been given. Sometimes this requires clarification from other sources. And while Google is not looked upon with favor by everyone, the variety of contributors can help demystify the language of the doctor’s office so that comprehending the information is a bit more possible.
Hospitalization introduces another realm of patient vulnerability, where advocacy is essential. If you are awake and aware, self-advocacy can work, but it is exhausting. If the stay is longer than two days, the parade of doctors is overwhelming. Each one is brilliant, and each one’s opinion, advice, or recommendation can be a little different—or a bit more technical—than the others’. You may ask to have instructions repeated, and you can request the basics of the plan in writing to ensure you fully understand the situation and all options. However, a second set of ears is always a good idea. If English is your second language, request a certified interpreter.
Further, it is advisable for everyone to grant medical power of attorney, a legal instrument that authorizes a designated person to make healthcare decisions on your behalf. You must also sign a HIPAA release so your physician is free to share your private information. Your proxy or advocate should always be present if you are undergoing procedures requiring sedation—before, during, and immediately following the event—or if you are incapacitated in any other way.
This is not to impugn members of the medical profession or the staff of any medical facility. They are impressive and committed to excellence. But mistakes happen. I fortunately avoided dangerous surgery because my daughter was present. In another case, a close friend underwent surgery at a surgical center. She was given documents to sign and was being processed for release before she was fully awake. Her advocate was not allowed in the recovery area, but he was able to intercept and delay her release until it was safe. A bronchoscopy that was neither discussed, recommended, nor ordered was performed on a colleague’s mother because no one was there to ask questions.
Self-advocacy clearly is not always reasonable, feasible, possible, or appropriate, as in the cases cited above. But identifying friends or family members who are available to act as advocates or proxies can sometimes be problematic. Families are dispersed, there may be no family, everyone is busy, or they just don’t want to be involved. The good news is that resources do exist. Many hospitals provide advocates, social workers, case managers, and other services to facilitate patient support. Community and faith-based groups, as well as disease-specific organizations such as those for heart disease, cancer, or diabetes, can also help. And, as always, fee-for-service advocates can be hired to fill the gap when all else fails.
What we know is that anything can happen to anybody at any time. I certainly did not expect to find myself in need of an advocate that frightening morning in the hospital. It seems to make sense, then, for all of us to have a plan that will give us a better chance of survival when “anything” happens.
Dorthy A. Webster is a UCLA retiree who is originally from Alabama and now lives in the Kansas City metropolitan area. A proud mother of three and grandmother of four, Dorothy finds joy in family, friends, reflection, and sharing the lessons of a well-lived life. Ms. Webster is a Senior Contributor for reelurbannews.com.