Episode 4: The Customer Service Conundrum - Pt. 2

My mother's cancer diagnosis came with a heaping side of drama. There was yelling. There were tears - and immediately following this devastating diagnosis, she was kicked out into the rain by a callous doctor. I'm Zuri Parks, and this is chaotic.

Hello caregivers. Welcome to episode 4 of This is Chaotic. I'm your host Zuri Parks, and I thank you for joining me. Today's episode is part 2 of the Customer Service Conundrum as promised; and specifically I'm going to discuss bedside manner, which is defined as a doctor's approach or attitude towards the patient.

What are some examples of bad bedside manner? Let's see... In a recent virtual appointment with my father's neurologist, his first question to us was, "Why are we here?" Then he proceeds to say - in front of my father - "Yeah, it's all downhill from here. It only gets worse." And when we told him that my father had been seeing a physical and occupational therapist, his response was, "That's nice, but it won't help."

Or, how about when my grandmother was hospitalized and a doctor came in and fully exposed her hoo ha to me, and anyone else in the room, without a care in the world - like she was some animal. My grandmother couldn't speak at the time, but she was aware and I'm sure she would have been mortified by this. I covered her back up, and I was in such shock. I just looked at the doctor like, did you really just do that? And those are just some examples.

So anyway, before I get into the nuts and bolts of this episode, I want to make it clear that it's not my intention to malign the wonderful caring doctors out there. I'm mindful of the fact that we are now dealing with a pandemic and that has changed a lot, but I do think it's important to share these stories so that these things don't continue to happen whenever we return to normalcy or our new normal - whatever that looks like. With that said all of the following incidents took place before COVID.

So, first off, I want to preface these stories with a brief discussion about cancer, because all of the incidents I'm about to share, involve my mother's medical care. So I want to give a quick overview of the type of cancer my mom had, or at least do the best I can as a lay person. Please bear in mind that I'm not a medical professional. I'm not a doctor or a researcher. This is just my understanding of metastatic breast cancer and the specific type that she had. So with that, let's dive right.

One thing I think a lot of people don't understand about cancer in general is that even if two people have the same cancer - be it prostate, lung, breast, or whatever - no two cases of cancer are the same.

Two people with breast cancer could have two different types of breast cancer; or they could have the same type that is driven by different things, such as hormones or genetics. In my mom's case, she was a proactive patient with no family history of breast cancer who unfortunately wound up with invasive or infiltrating lobular carcinoma (which is also called ILC in the oncology community), which was estrogen receptor positive. I'm going to break down what all of that means.

The first piece to the breast cancer puzzle is that different people can have breast cancer, but for each individual, their cancer thrives on different things. So one person can have breast cancer that thrives on the hormone progesterone. Another may have breast cancer driven by the HER2 protein. Another person may have breast cancer where it's unclear what it feeds off of. This is known as triple negative breast cancer. In my mom's case, it was estrogen receptor positive, meaning it thrived on estrogen. Doctors refer to that in shorthand as ER positive (ER+).

If you're, God forbid, diagnosed with breast cancer, they will determine your hormone receptor status when they biopsy the cancer. And this is important to know because it will determine your course of treatment. And that's why you may see one person with breast cancer who is getting a certain type of chemo whereas another person is getting a different type of chemo. So if you have estrogen positive cancer like my mother did, treatment would likely involve hormone blockers that specifically block estrogen from reaching cancer cells, to restrict their growth. This basically means they try to starve the cancer by depriving it of the estrogen that it's using to grow and spread.

As far as the breast cancer types go, the vast majority of people who develop breast cancer have ductal carcinoma, meaning it starts in their milk ducts. Lobular carcinoma, which is what my mother had, affects a smaller population and begins in the lobules, or the milk producing glands of the breast; which in turn empty into the milk ducts.

What's unique about ILC is that it does not generally form a lump in the breast. So you can do breast exams all day long and get your mammograms. But if you have ILC, you will likely, never feel a lump and mammograms are not as likely to pick it up. It doesn't form a lump in the breast ILC grows in strands, tube-like structures, or sheets that mix in with the healthy breast tissue. So instead of a lump, you may feel a thickening or swelling, which makes it more difficult to diagnose than the more common ductal breast cancers.

What further complicated my mother's diagnosis was that she also had dense breasts. When you have dense breast tissue, mammography is not as effective. So my mother was getting routine mammograms every year and always reminded us to check our breasts. We even had a breast exam guide posted in our shower at home. However, her mammograms never picked up on the cancer, and she couldn't feel it on a self-examination. So she basically had two strikes against her as far as detecting the cancer was concerned. And it was growing and spreading, and it was missed. By the time my mother was diagnosed, it was considered metastatic breast cancer - which basically means it had already spread. And I just say that to make it a point that a lot of times when you see public health campaigns, commercials, things of that nature, they urge people to be proactive and it's not always that people are not proactive. Sometimes the technology that we have, or the technology that you have via your healthcare provider or your healthcare plan, is not sufficient to detect the type of cancer that you have.

This is not to say that you should not continue to be proactive and get checked. I just wanted to say that because sometimes this narrative that people are not proactive - it really bothers me because I've seen many people who have been proactive and their cancer was still missed. I had a coworker who passed away right before the pandemic started from colon cancer, and she was proactive. It was just missed because of where it was growing and how it was growing in her colon. So I really went this narrative that it's the patient's fault because they're not proactive to stop, because there are a lot of people who are proactive and it is missed - and my mother was one of those people. So that's just to let you all know, and just to share that information.

So if you have dense breast tissue, or your doctor has not had that conversation with you, you need to ask them about it. If you have dense breast tissue, you should be getting an ultrasound either in addition to a mammogram or in lieu of a mammogram, and this would have been life-saving information for my mother. I'm also sharing all of this to say that it made my mom's diagnosis more difficult, and I'm going to tell her diagnosis story now because it is a particularly traumatic one, I feel. I mean a cancer diagnosis is always traumatic, but you would hope that your doctors would be more sensitive than my mother's doctors were.

The way we found out was that my mom had a lump on the small of her back, dead in the center, just above her spine. It was painless and it was a pretty good size. She had brought it to her doctor's attention and I don't recall what their initial response was, but it obviously was not a biopsy. Given the size of this lump, it is completely unacceptable to me that their first course of action was not to do a biopsy. That should have been the first thing that they did. Instead, her HMO eventually referred her to a dermatologist who did a biopsy.

I was unaware that she had gotten a biopsy at this point. So the day before her follow-up appointment, my mom called and informed me that she had an appointment and asked that I accompany her. I initially thought she was pulling my leg, but as the conversation went on, I could tell that this was serious and that she was afraid. So of course I agreed to drive her.

The day we showed up to the dermatologist. I had a bad feeling. I will never forget that day. It was driving rain - like buckets. And it was just a completely gloomy and dark day. I wish I could share the name of her doctor because he had one of those names that so distinctly matched his profession, but I don't want to get sued. So I won't. And obviously after I tell you this story, you'll understand that I really can't stand this man, so I don't have good things to say about him and I won't share his name. Anyway, I noticed that he called all the other patients back before my mom even though she had her appointment at a given time. Finally, he calls her back and he says to her, "Um, I don't know why your HMO referred you to me for this, but you have cancer."

He then proceeded to repeat that he didn't know why they sent her to dermatology for this, told her to follow up with her doctor, and that's all we could tell her; and then he kicked us out. He was literally like, "Well sorry to put you out. But our office is closed for the day." and he kicked her out, crying and sobbing into the driving rain with this diagnosis of cancer looming over her head. I will never forget that. And I will never forgive that man.

But if you think that's bad, it gets worse.

We head home to inform my father and sister. I'm driving and trying to comfort my mom who's in shock and crying. Meanwhile, I'm trying not to cry so that I could be strong for her. The next day or so, she has an appointment with her primary care physician. Both my sister and I went with her for moral support because she knew that the cancer diagnosis would be the topic of discussion and she wanted us there.

So we're in the exam room waiting for the doctor. She enters the exam room and greets my mom, who introduces us to her as her daughters; and then her doctor promptly turns to me and my sister and asks us to leave the room. We explained to her that our mother asked us to be there, and then she very rudely told us to get out. She said, "Get out! You can't be in here."

As you can imagine, We were already in a fragile state. My mom was devastated to find out that she had cancer and she's nervous, as anyone her shoes would be. So she's just helplessly watching this drama between us and her doctor unfold. And the next thing you know, we're in a full-blown argument with her doctor, she's yelling at us to get out. We're refusing to leave our mother's side. I'm yelling back. My mom is begging us to stop fighting and now she's crying. It was a huge mess.

Apparently everyone else could hear us arguing in the exam room. I don't remember how I wound up in the hallway, but a nurse walked by and asked me if I needed to speak with the doctor's supervisor. So my mom's doctor winds up down the hall where you can hear her supervisor reaming her out. It was total chaos. She finally comes back into the exam room and she's bawling - tears! She's crying and apologizing to us and to my mother. It was a hot mess.

So she goes on to explain that she didn't realize my mother had already been told that she had cancer, and she also thought that my sister and I were kids - like teenagers - when in actuality we were both in our thirties at the time. To me, honestly, that was no excuse because the patient - my mother - asked us to be there. Even if we were teenagers, it would have been inappropriate for her to speak to us the way she did.

She apologized and we moved on to continue with the discussion about treatment and next steps. Later on, I did come to realize that she was a good doctor who actually cared about her patients. She just behaved completely inappropriately that day - maybe because she was upset. I don't really know, but at least she cared, unlike my mom's oncologist.

This woman was her oncologist for about seven years, which is how long my mom survived with the cancer. And I never really got a good vibe from this doctor. I always got the sense that my mom was just a number to her. Maybe it was because she was actually a researcher who switched to practicing. And while breast cancer was her specialty, people skills were clearly not her strong suit. She always came across to me as fake, like, she was maybe only doing this as a part of her research. Nevertheless, my mom liked her and refused to switch. Fast forward to seven years later, when she started to decline from the cancer. She was hospitalized in the oncology unit of a local hospital that is partnered with her HMO.

On this particular day, I found out that her oncologist was on rotation and I thought surely she would check in on my mom - her patient of seven years. As the day went on and I didn't see her, I called her nurse to confirm that she was there. But as it neared the end of the evening, when the doctors on rotation typically left for the day, it became evident to me that this woman had no intention of coming by to see my mom - and yeah, that pissed me off.

So I called her nurse and asked her to connect me to the doctor. She answers the phone and I say this is so-and-so's daughter, and she was hoping you would stop by since you were on duty today. I told her what room my mother was in and asked if she was coming by. She proceeded to hem and haw and make excuses - at which point I finally lost my patience. It's like years of frustration with this doctor just erupted.

So I stepped away from my mom and had words with her, which ultimately ended with me telling her that I knew she never cared about my mother, but my mother was under the impression all of these years that she gave a damn, so she better get in this room right now and act like she cared - and then I hung up.  Shortly after that, she comes marching into the room with an attitude and a purse on her shoulder, like she's on her way out and we're inconveniencing her - my mother who was dying was inconveniencing her.

She sat down and she spoke with my mom for awhile. I don't remember everything that she said, but I think it just made my mom feel better that she came in to speak to her. Because again, she unfortunately was under the impression that her doctor actually cared.

I forgot to mention one thing. I think my mother's oncologist was also upset with me because as I mentioned, I was in touch with other oncologists. And what one of those oncologists recommended we do when my mother wound up in the hospital was that we asked for another pathology report using the fluid that had been drained from her abdominal cavity. So this fluid is called ascites, and that's what a lot of cancer patients have when you see that they have a distended belly, like they look pregnant. That's usually ascites, and ascites is normally one of the signs that the cancer has advanced to an unfortunate stage.

So what they do to relieve the discomfort for the patient, and relieve some of the pressure, is they'll continue to drain this fluid; and that fluid contains the cancer. So this oncologist recommended that I request another pathology report, or a new pathology report rather, using this fluid, and he suggested that they look at it to see if the cancer had mutated.

What that means is what can also happen with cancer is that you may start off with cancer that is driven by one thing (which in her case was estrogen) and then it changes because cancer adapts in a way to circumvent treatment. Unfortunately, it's just very smart that way. So she was initially diagnosed with ER-positive or estrogen receptor positive cancer, but it can also change; and one of the indications that your cancer has changed is that treatment stops working. What pathology found was that her cancer had actually mutated and changed to triple negative status - meaning there was no telling what was driving it at this point. And what I wonder is at what point did it mutate. At what point did it change to triple negative, and were we treating it as an estrogen receptor positive cancer and giving her hormone blockers beyond the point that it was useful, when it was no longer effective? And maybe we could have tried something else a year ago. We'll never know; and I think her doctor was upset about this because if anyone should have sent her sample to pathology, it should have been her. Nevertheless, my last concern was for the doctor's feelings or her indignation at this point. My mother was the one with the cancer, and she was the one who was dying, and she was the only one that mattered. Her doctor and I were clearly not on the same page about that, and this was acceptable to me.

So yeah, those have been our experiences with bad bedside manner. And I just, again, I want to share these stories because obviously we met with doctors who were great, but when you're dealing with a terminal illness - what you don't need is a doctor who feels like you're inconveniencing them. I share these stories because I understand that doctors are human and sometimes humans are not self-aware. People are not very self-aware, and maybe they're just projecting something - a bad experience or a bad day - onto you; but you can't afford to do that when your patient is dying or dealing with a terminal illness, and that's it. I just wanted to get that off of my chest because it is a point of contention for me, and I'm sure a lot of other caregivers out there. Hopefully other doctors will hear this and know this is not the approach that you should take with anyone, much less someone facing a serious illness.

That's it for my horror stories with my mother's doctors. Moving on, I wanted to get into the wellness minute for this week. And my wellness minute this week isn't so much about relaxing as it is tips for advocating for your loved one, or even yourself.

The first thing I want to encourage you to do is get a second opinion. Even if you trust your doctor and you've had a good experience with them thus far, getting a second opinion can't hurt; especially when you're dealing with a serious illness. Google is your friend. Look for a doctor or a researcher who specializes in your loved one's illness. My mother was stuck in her HMO as far as treatment was concerned, but I still sought out oncologists outside of her HMO who were very helpful throughout her cancer battle. You would be surprised to find that some specialists will offer consultations or recommendations to you at no cost. They'll even send you written recommendations, as two such doctors did for us. And one, as a professional courtesy, sent his recommendation to her oncologist as well. This also comes in handy because you want to ensure that your healthcare provider is taking the best approach possible to treating your illness; and I imagine if they realize that another specialist is giving you advice, that encourages them to ensure that they look closely at the patient who is your loved one and make sure that they're taking the correct steps, because it could actually result in a lawsuit or a malpractice suit later on. So, yes. Get a second opinion or, in the very least, check with doctors or researchers who specialize in the illness affecting your loved one.

My second tip is don't be afraid to speak up. Sometimes people aren't self-aware and doctors are human. Maybe they're having a bad day and projecting something personal onto you, and they don't even realize it. They won't know unless you say something. You'll find that, in most cases, they're apologetic because they didn't realize it. Maybe they were behaving a certain way, but the behavior won't stop if you don't speak up. If you don't point out that they are behaving inappropriately, how will they know? So I want you to feel empowered as an advocate for your loved one, or as a patient yourself. If there is any time in your life to stand up for your loved one or yourself, it is when dealing with a serious illness. I think we have a tendency to feel like we can't say anything because the doctor is the expert or the one in control, so to speak, but it's your body and you're the one who will suffer the consequences if this doctor is not proactive or if they don't choose the best treatment for you. They aren't always going to know what will work 100%, but you want to make sure that they take your loved one's care and condition very seriously as they would their own. So make sure that you don't feel a lack of agency when speaking for your loved one. Doctors are human and put their pants on one leg at a time, just like you. Always remember that, and speak up.

If you're unhappy with the level of care, you can switch doctors (provided that your loved one - the patient - is on the same page). You don't have to continue with a doctor who doesn't have their best interest at heart. Always keep that in mind.

And my last tip is put your concerns in writing. I know that's easy to say as someone who's comfortable with the written word as I am, but it's unfortunately necessary in certain situations. If you feel that your loved one's doctor is not taking the necessary course of action - like they aren't running the right tests or whatever it may be - you can take the following steps. A friend of mine who practices health law told me to do this for myself years ago, and it worked. Say you went to the doctor for a specific concern or symptom, and they said to you, "Oh, you're young. I'm sure it's nothing," and you walked away feeling like you really should get this checked out. You need to sit down and write a letter and send it via certified mail. In that letter, just state the following facts:

• the date of your appointment
• the doctor you saw
• the symptoms you went in for and
• that doctor's recommended course of action

It should just say something like,

"To whom it may concern,

On February 24th, 2022, I saw Dr. Smith for chest pains and they recommended the following..."

And if they told you to take aspirin and sleep on it, you state that in the letter.

Then the next step is to mail that to your healthcare provider via certified mail. That is very important, so that they can't deny receiving your letter.

I did this years ago, and as soon as they received the letter, my HMO called me and thoroughly investigated my symptoms. Why? They don't want to get sued, and this letter shows that you are documenting your doctor's visits. And now that they have confirmed receipt of your letter, they can't later on claim that you never made them aware of this issue. And yes, it's ridiculous that you have to go to such great lengths to get checked out thoroughly; but that's our healthcare system for you.

I know all of this is difficult and you're tired, but please try to advocate for the loved ones in your care because chances are they're too sick or feeling too weak to fight for themselves. If you feel like your relative, or friend, or whomever it may be, is in no condition to leave the hospital yet you can decline the discharge. I did this multiple times with my grandmother and my father and my mother. If they seem to me like they were in no condition to be discharged, I refused the discharge. And I don't believe that's the doctors; that's the insurance companies trying to get them out as quickly as possible so that they don't have to pay - but it's coming from the doctor or the hospitalist at the time or whomever when they come in to see you. I suspect that a lot of times they don't think that your loved ones should be discharged either. So just say no. When it does finally reach that point where they absolutely have to go you'll know, but in the meantime, follow your gut. If they seem like they're not ready to be discharged, then refuse the discharge.

My grandmother had brain surgery. What she ultimately had were abscesses. There was a big one in her brain that was putting pressure on her brain tissue and causing stroke-like symptoms. Anyway, I opted for them to perform brain surgery on her in an attempt to drain the larger abscess. I promise you, it was two days after brain surgery and they were ready to kick her out, or discharge her rather. Who has brain surgery and is ready to go the next day or two days later??

So I told them no, and she proceeded to remain in the hospital for another two weeks or so until I knew that it was time for her to move to hospice - and not a minute sooner. So please look at your loved one. You can tell if they're in no condition to be released, and refuse to let them discharge them if they are in no condition. Can I guarantee that you won't get slammed with a bill from the insurance company? I can't. I can understand if you're concerned about that, as most of us are. In retrospect, that wasn't my priority at the time. There were no big bills from her insurance carrier afterwards; but when in doubt, call the insurance provider and ask questions. You are entitled to those answers. So there are options, and I just want to encourage you all to feel empowered enough to explore those options. Get a second opinion and speak up. And those are the wellness tips for this week.

That's it for this episode of This is Chaotic. If there's anything you would like to share with other caregivers and listeners, please leave a recorded voice message to be played on the show at thisischaotic.com. Just click on the mic icon in the bottom right corner, and you can record a message to be aired on the show. Or you could click on "Contact" and leave a written message via the contact form, and I can read that on the show. Please spread the word and subscribe to future episodes wherever you listen to podcasts.

Until next time, remember, we are all doing our best. Take care and thank you for listening.