A Post for Every Oncology Medical Practitioner

I have often spoke about how nurses, doctors and other medical practitioners just don't ''get it' because they have never been through it themselves. They also don't understand what they do not understand, because they haven't been there.It has been my greatest desire to have medical practitioners who have had the ailment they are treating. Especially oncology medical practitioners.

An oncology nurse recently wrote an apology letter to all her patients. She had not 'gotten it' in all her dealings with patients in her care. Now she knows what she did not get because she has now been diagnosed with a stage III colon cancer. This unfortunate diagnosis now helps her in her dealings with patients. Her letter begins with the paragraphs below. But please go read the entire letter yourself.

"Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it.

This thought has been weighing heavy on my heart since my diagnosis. I’ve worked in oncology nearly my entire adult life. I started rooming and scheduling patients, then worked as a nursing assistant through school, and finally as a nurse in both the inpatient and outpatient settings. I prided myself in connecting with my patients and helping them manage their cancer and everything that comes with it. I really thought I got it- I really thought I knew what it felt like to go through this journey. I didn’t.

I didn’t get what it felt like to actually hear the words. I’ve been in on countless diagnoses conversations and even had to give the news myself on plenty of occasions, but being the person the doctor is talking about is surreal. You were trying to listen to the details and pay attention, but really you just wanted to keep a straight face for as long as it took to maybe ask one appropriate question and get the heck out of there fast. You probably went home and broke down under the weight of what you had just been told. You probably sat in silence and disbelief for hours until you had to go pretend everything was fine at work or wherever because you didn’t have any details yet and wanted to keep it private still. You probably didn’t even know where to start and your mind went straight to very dark places. That day was the worst. I’m sorry. I didn’t get it."

Once you read the letter, please share it with your medical professionals. We can help educate our medical providers and perhaps this would help them understand our side.

Quick access to medical care

Do you see the nurse or the doctor (or the physician's assistant)? Back in the good old days, you went to the doctor and saw the doctor. A nurse might come in and take your vitals, bandage something up, or some other task that was below the doctor's capabilities. They were doctors and didn't do the basic stuff that would take away from their schedule.

Now you may see the doctor, the nurse, the nurse practitioner, or a physician's assistant or even someone else.... Does it make a difference? Not really. They all give out prescriptions, send you for tests, and diagnose and treat you. They all talk to each other if there are any questions.

Back when I was young and athletic in the 80's and 90's, I used to go skiing with Club Med in Colorado (an awesome vacation every year for seven years). One year, I was put in a group of skiers which included several doctors, a nurse, a few others, and me. It snowed overnight so we went skiing in the back bowls to enjoy the fresh powder. This entailed a hike up over a ridge in loose snow at about 14,000 feet (gasping for breath), over the head wall singly, and reconnect as a group with the instructor last to clean up any debris (skis, poles, hats, gloves, etc) to ski down for a mile or two, take another lift back up to ski down the front side of the mountain.

All went as planned. Each of us went over the head wall and into the loose powder (and you say 'why is she telling this story' - be quiet there is a point here) and across the flats. Last came the instructor, schussing across the flats, until his ski hit a rock just under a thin layer of powder where the wind had blown off the other foot or so of snow. He did your basic rolling fall with equipment going everywhere (similarly to 'the agony of defeat'). We started back to help pick up everything and give him a lot of sass for it.

All jokes ended when we saw the blood pouring out of his face. In a rather inaccessible place in the mountains, he caught a ski pole in his face and ended up with an 'Al Pacino Scarface' injury. The doctors stood and gaped and said they hadn't seen anything like that since internship. The nurse ran to his side and started yelling for clean tissues, napkins, bandanas, anything to apply pressure and stop the bleeding. The nurse knew what to do. She fixed him up and rode the chairlift back up with him and went with him to the clinic where he got five stitches in his face. The doctors went to lunch.

So on that sunny day on a ski slope on the backside of a mountain in Colorado, the nurse was the winner.

Now when I go to see my PCP or oncologist, I often see a nurse practitioner. When I see my pain doctor, sometimes I see his physician's assistant. Its not that big a deal. Particularly with my PCP, if I have a new ailment and need a visit as soon as possible, I'll get one of the nurse practitioners. I could wait a week before seeing my PCP or see the nurse practitioner. I'm happy with the sooner visit.

Think of this as well. Do you remember going to the dentist and the dentist cleaned your teeth? Now a hygienist cleans your teeth and a dentist does fillings and other nasty things with drills and pointy things. When I go to the eye doctor a technician checks my vision and glasses prescription and the ophthalmologist checks my corneas.

All this is for quicker medical care and more use of specialized training in different parts of the medical world. I'm all for it - I want the quicker access to medical care.

I got promoted

I now have enough ailments, or an important one, that allowed my insurance company to nominate me to get extra personal care. AccordantCare, which is part of CVS somehow, provides an information library and personal contact with a nurse who helps with dealing with doctors, treatment plans, and just some one to call and talk to about health issues.

Due to my RA diagnosis and my insurance company's arrangement with them, I get this extra care. I think it could be helpful. In addition to the fact that my RA is still not under control, my rheumatologist is leaving and I am getting a new one, and its a relatively new diagnosis, I think I could use some help.

I feel sorry for the nurse who is going to call me thinking I just have RA. When I get done with her at the first call, going through my ailments, my prescriptions (I was in the category of more than 9 daily), and other issues, I think they might be a tiny bit overwhelmed. How quickly will these conversations turn into 'with your medical history, we need to be sure' conversations? (I hate that part.) I am sure that s/he will want to focus on RA which is fine but there is more to my health that just it.

I have a call scheduled with the nurse for a week from Monday so I'll wait and see how it goes. In the meantime, I will take my creaky body to the gym to see if I can get moving today.

Improving the patient experience

The latest trend in medical care is focusing on the patient experience - everything from motivating doctors to provide better care to their patients to reimbursements tied to patient health and survey replies on the patient experience. The better the care, the higher the compensation. I think this is a very good idea - after all as the patients we are the most important part of the medical care system.

So some 'rocket scientists' have decided that they should improve the care level patients receive from nurses. I have always thought nurses do their best to care for the patients. They provide more direct care and TLC than any other medical professional. After decades of staff cuts for cost cutting reasons, nurses are asked to do more and more with fewer and fewer staff members to help them.

So the 'rocket scientists' have decided that the best way to improve the patient care is to provide scripts for nurses to should use in communicating with patients. I 'sure' that is the best way to improve patient care - give professionals the 'Disney' scripted version. Of course I am sure the nurses would never have come up with the proper words on their own. They are only professionals with lots of training. They could never think of the proper words on their own. I have my own ideas on how to improve patient care:

1. Hire more nurses. All nurses I have seen, especially in in-patient situations, have way too many patients to handle them all properly. The most common complaint I have had is that I have had to wait for extended periods - hours - before nurses could get to me because they were overworked.
2. Provide periodic training sessions to remind nurses of the new care standards.
3. Hire more nurses. Did I already say that? Well its worth repeating.

I noticed that in the new focus of health care in Massachusetts where patients are required to have a primary care physician, more nurse practitioners and physician assistants are being hired to help fill this gap. Maybe this should extend to the in-patient scenario where nurse to patient ratios are stretched too thin? Hiring more nurses does increase costs but if the focus is on improving patient care and hospitals are compensated for this, then the costs should be less of a concern.

Being a patient

I have given myself the title of 'Professional Patient' which I believe I deserve because I spend so much of my life going for some kind of medical treatment. I was faced with this sad fact yesterday when I went for a medical adventure for my back.

All my back medical adventures and all my surgeries check in at the same area so you can guess I am very familiar with the process. Stop and check in at the main desk upstairs - which is very silly as all they ever do is check your name off on a piece of paper and then tab through a million fields on the computer, never asking a single question. You just stand there (which is not a piece of cake with my back these days), then they take their ruler and check you off on the piece of paper and draw a line underneath your name. Then they turn to the computer and tab, tab, tab, tab, tab, tab, tab, tab, tab, tab, tab, tab, you get the point. Finally my back hurts and they say 'you're all set, go down to the second floor, and go through the blue doors and check in there'. I don't wait for them to say more than the first three words, before leaving. I know where I am going. I always take the stairs down as there usually is a wait for the elevator but yesterday the doors magically opened on a down elevator just as I was walking by it.

I go down to the second floor and check in at the desk there, which means writing my name on a piece of paper and checking off that I am in pain, yes I have someone to take me home, there is no chance I am pregnant, and sit down in a comfy chair. A nurse comes out and gets me. Yesterday I went in the right door - that's for people who have to change into the 'lovely' hospital gown, robe and little booties (apparently these are meant to be ugly so no one will steal them). If you go in the left door, it means you get to keep on your regular clothes. After changing, you sit down in another chair - except yesterday they were ready for me before I was ready for them so I made them wait for a minute.

The nurse said to me 'Do I know you from some where?' 'Um, no, I'm just here a lot. This is my fourth visit since October.' 'Are you sure? Do you work here?' 'No. I just visit a lot.' That was just the first nurse, then there is the nurse who takes you to the procedure room and back out - she's nice with the long Greek last name (she's not Greek, her husband is), and the other nurse who was in the pre-op area. I know them all. Now they recognize me too.

While I was waiting my turn for a little medical fun, an employee tripped and fell right behind me. I didn't see the fall but the Greek named nurse did. All I can say if you fall, be sure to fall in a hospital as five nurses came running with gauze for blood, ice packs, a wheel chair etc. They insisted the fallen employee take a seat in the chair across from me - I knew her too. She is the woman who is the friend of one of the women from my support group and preps women for the breast biopsies and ultrasounds. She's very nice and funny. And was really mad at herself for the big to do over her little fall - but was happy for the ice on her hand and chin.

That was just yesterday. I recognize a lot of the others - the nurse in endocrinology who clearly came from some former Eastern European republic as she has the accent and a very cranky attitude. Or the nurses up in pain management are very nice - the one who schedules the 'medical adventures' is very accommodating as well as good at finessing the system as needed. The check-in desk for orthopedics has very nice fake flowers that I always admire while waiting in line.

The hospital has nicely added flat screen TVs to many waiting rooms in recent years so we are no longer stuck with 'do I flip through this boring magazine or try to avoid looking at other people moments' we can gaze stupidly at the 'boob tube'. There is a piano in the lobby and occasionally there is someone there playing it as well.  I have preferred parking areas in the giant garage. I hate that dilemma - where is the damn car? I try to park consistently so I can find it again without overtaxing my tiny brain.

The cafeteria has been upgraded and they nicely label which ones are heart healthy and provide many calorie and fat gram counts. But they also sell cookies and chips if you have a 'bad' appointment and need some sustenance. The best cell phone reception is in the cafeteria by the windows. The reception in the lobby borders between awful and non-existent. And there is free wi-fi everywhere.

I think I visit there too much. I recently had a month of no visits. That is now over. I go back for another round of medical fun on Monday. I can't wait.