From birth to death, the medical treadmill- why don’t we question it?

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A week or so ago, the nurse at my mom’s nursing home told me that they HAD to make an appointment for my mom to go in and see the surgeon who did her laparotomy and removed the cancerous ovarian mass. The nurse made the appointment and told me when it was. Since mom has not been out of bed much in six weeks, a wheelchair van company was contacted to provide transportation to this appointment. This is where the fun started.

The van would not transport mom without $120 up front. It seems Medicare and Blue Cross wouldn’t cover it. The only other option was for us to take her ourselves and I was certainly not looking forward to that. We would have had to get her into the wheelchair, and then into the car, reverse the process at the doctor’s office and then do it again after the appointment. It would take a lot of wear and tear on me and my older boys, hoping to get her in and out without hurting her and probably not all that comfortable for mom either. So we paid the money.

I opted to meet mom at the doctor’s office. When I got there I was a little surprised at how small the waiting room was. I think my downstairs bathroom might be bigger! I took a seat behind the door, which got solidly bumped everytime another person came into the room. I wondered how we were going to manage when mom arrived in a wheelchair taking up what was left of the available floor space in the waiting room. Turns out that it wasn’t a problem.

Every woman in that waiting room was there for some kind of gynecologic cancer. There were a lot of nerves and anxiety in there; you could cut the tension with a knife. But there was also a little bit of humor when some of us got a little chit chat going. Still, for all the seriousness that brought us to that office, I was a little surprised at how quickly people were getting in and out. In the 45 minutes I sat there waiting for mom to arrive, five women got in and out. These weren’t going to be long, drawn out appointments with a lot of counseling, discussion and a bit of hand holding. In and out.

When mom did arrive (late because the driver didn’t know his way around Akron) I navigated the narrow hallway and doorways. It was impossible to make a smooth turn into the exam room. I had to lift mom in the wheel chair and then pivot on the wheel in the direction I wanted to go.

I didn’t really recognize my mother. She was hunched over to one side, unable to straighten up. She looked more like 101 instead of 81. She complained of pain in her bottom, pain in her abdomen and even her shoulder. She was wearing a caftan robe over her that clearly needed a night gown under it or a shirt over it. I know if mom had felt better she would never have gone out with that much of her chest exposed. And I sat there wondering what in the world was so damn important to be done at this appointment that we had to bring mom across town into this tiny office when it clearly took so much time and effort and discomfort on everyone’s part?

In short order the surgeon came to our room and sat down. Mom started talking about how she was feeling and what was going on. He started writing. After about a minute he asked, “Who is her primary care doctor?” He wrote that down. Mom talked about a minute more and he asked to see her incision. Mom’s incision is about six to eight inches long. He lifted her gown and maybe saw about an inch of it, pronounced it healing well, and kept writing. He didn’t palpate her abdomen. He didn’t want her on the examining table.

As he was getting ready to get up and leave (maybe a good five minutes or so into the visit) I asked him again about her cancer staging. He checked his records and said, “Stage III.”

Mom did lift her head up then and said “that’s not good!” The surgeon wrote something else down.

Mom asked, “So how much time do I have?”

To which he replied, “Well that depends on whether or not you decide to go with chemotherapy.”

Mom went on about her experiences so far with cancer treatment, and when the surgeon heard that she already had a record at the Cancer center and a regular oncologist for her multiple myeloma, he said, “You need to talk to your oncologist about this if you decide to go for chemo.” He looked directly at me when he said, “if.”

There was no handholding, no small talk. Mom did want him to look at her backside which is giving her so much trouble, but I know it’s because of the bedsores, and I also knew he had no intention of examining her more than he already had. He did rub my shoulder sympathetically as he passed by me to leave the room. He promptly went back to his office and I could hear him start to dictate a letter to mom’s primary care physician. As a transcriptionist, I guess I appreciated that he does his dictation right away.

The ambulance guy showed up quickly and I walked out with them to make sure mom got on the van alright. As the motorized lift was taking her up I told her that I would visit tomorrow. For a minute my mother was back. “You better!” she said, “or I’ll come and get you!” She smiled. I teased that I might just take her up on that to see if she would, but by that time she was hunched over again with another pain. I don’t thinks he enjoyed the sunshine, the warm breeze, or saw any of the bright and beautiful flowers blooming along the side of the building.

And I sat there and wondered what the hell had just happened. We had just spent $120 dollars and most of the morning to get an elderly, sick woman in a lot of pain across town so the surgeon could dot his i’s, cross his t’s and get his part of her case closed. The nurse at the nursing home took out the staples and she could have told him how the incision looked. In my opinion the entire exercise was a complete waste of time.

I also thought about these women, battling their own different cancers and diagnoses. All of them in and out of there in record order. It can only be compared to the prenatal/OB assembly line where pregnant women come in, pee in a cup, get weighed, measured, spend two minutes with the doctor and then go out to set up another appointment. This is standard of care. And we have allowed it to become this way. And before anyone harps on how national health care will change that let me just say, it absolutely will change it – it will get worse.

But now that I “get it.” (God, am I dense or what?!) I absolutely refuse to go through this again. I am going to call the oncologist’s physician’s assistant and see if there is a way we can set up this treatment and appointment in combination with an actual treatment, or if we can make some other course of action without having to drag mom all over town. That may mean bringing in hospice. I don’t know. And now that mom has heard from the horse’s mouth about her cancer staging, maybe she has some ideas of her own on how she wishes to proceed.

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