The Back Road: On being the boss in your health care

The Back Road: On being the boss in your health care

Andrew Malekoff

Over the course of my lifetime, I have been hospitalized for planned procedures and life-and-death emergencies.

With planned procedures involving an effective team of healthcare providers, I have felt the best-taken care of and received the clearest communication before, during, and after. In other instances, I was less fortunate and experienced breakdowns in communication, often among strangers passing by my bed.

It is not my intention to criticize a particular hospital or specific healthcare provider. For the most part, individual nurses, doctors, techs, and others have been caring and competent.

Most troubling during my hospital stays were the times when anonymous providers and management personnel passed by my bed individually or in small groups.

Most often, I did not know who they were or why they were standing over me, other than to teach others in the group or generate a bill. They rarely clarified their role as it pertained to me.

Although they never failed to ask me the perfunctory, “How are you doing?” it often felt like one-way communication, as if they were less there to hear any concerns I may have had, as opposed to logging in that they stopped by.

Case in point. As a 14+ year cancer survivor, who has received multiple chemo- and immunotherapy infusions I had a port installed in my chest for a procedure some years ago.

A port is a device used to draw blood and provide treatments such as intravenous medication.

My port is situated under the skin, on the right side of my chest. It has been helpful since the veins in my arms have been compromised after many years of blood drawing and infusions, including a stem cell transplant.

During one hospital stay, not directly related to cancer, I asked the providers to use the port rather than my arms as my veins had blown up or collapsed over the years.

Without explanation, I was advised they could not. Consequently, they proceeded to repeatedly butcher my arms and hands trying to locate usable veins. It was not the routine “hit and miss” that is not uncommon in drawing blood and that I had grown accustomed to and tolerated for years.

As the parade of hospital personnel passed by my bed, I appealed to my “visitors” to inform me why the port could not be accessed.

“If you would only give me a valid explanation,” I said, “I could better accept your decision to bypass using the port and do my best to cope.”

After I explained, each of them pledged to get back to me. None did. Not one. The butchering continued. In one instance I was left in my bed in a puddle of blood.

Later, when a group of five or six strangers stopped by my bed, I asked to speak first. “I feel invisible here, like a non-person,” I said. “I ask for basic information, your colleagues nod “yes” and then walk away. Afterward no one returns and I get no answer. It is as if I am a non-person. You disappear like vapor into the mist.”

One does approach me later as she needs information from me for her paperwork. She comments, “You were respectful in what you said. Please continue to advocate for yourself.”

On another occasion, I express my frustration to a manager that stops by for reasons unexplained. I appeal to her and inadvertently let an obscenity slip out.

The visitor reprimands me, “We don’t use that kind of language here.” She ignores my concern, apparently outraged only by my language, expressed clearly out of frustration as opposed to aggression.

A doctor who I never met before comes by and provides me with information indicating I will be discharged shortly. I tell him that what he is telling me contradicts what the specialist preceding him told me about my having been scheduled for a lifesaving procedure in a few hours.

I tell him, “This is extremely poor communication.” He makes a pathetic excuse. I refuse to talk to him further.

Inexplicably he stops by my bed again on the morning after the procedure when I am in recovery in the Intensive Care Unit. He offers more inaccurate information. I send him away.

Later that day, a nurse stops by and confides in me that my request to use the port had been approved a day earlier but failed to be implemented expeditiously.

The issues I am addressing represent impersonal, inadequate, inaccurate, and harmful communication that caused me to question my perception of reality when I was already in a most tenuous situation. Hospital patients under stress need less of that, not more.

One very simple recommendation regarding advocating for oneself is to bring a pen and pad into the hospital and ask everyone you do not know who stops by your bed to write down their name and title.

Do not interact with them until they comply. Be the boss. They are there to serve you. It is not the other way around.

Refuse to talk to them until they comply. When they leave take a brief note of what they said to you. You need to have their names if someone asks or should you decide to make a report to hospital authorities.

Consumers must stick together to keep providers honest when dysfunctional communication and questionable practices prevail. If you have trouble doing so, ask a family member to intervene.

Now, reader, I understand that you might think a few needle pokes to find a vein is trivial in the context of the lifesaving procedure or surgery that might follow – much ado about nothing. Although I do not agree, I get it! Even so, straightforward communication always matters.

It matters when you are in a vulnerable state, prone a hospital bed, and trying to communicate with anonymous strangers lording over you as if you are a specimen for study rather than a living, breathing human being who deserves to be treated with dignity.

It can be traumatic when trying to give voice to your distress, whatever it may be, and then left to feel invisible, voiceless, unheard, and stripped of dignity. It challenges one’s sense of faith and trust in the care one seeks.

It does matter. Be bold. Be the boss.

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  1. YES! Absolutely true, always, always advocate for yourself or have a spouse/family member do so! Personal experience has taught me this. Never just accept mediocre care! Demand more! You are entitled to it & deserve it. You might not get a second chance. Contact the hospitals “patient advocate” quickly, if necessary.


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