The Pulse

Author – Brooke Billingsley
What can I do? That was the question I asked myself once I came to grips with the diagnosis of cancer. I have always lived a moderately healthy lifestyle – worked out three times a week, had a normal BMI, don’t smoke, drink a glass of red wine on occasion, and avoid white foods. I was shocked when I found out that after living this lifestyle that I had cancer. I look around and see people eating whatever they want. They wouldn’t think about going to a gym; and yet, I have cancer.

The idea of eating well and taking care of myself only to be pumped full of dangerous chemicals was insane to me. I have done enough research to know that one’s well being is dependent on a healthy immune system and that one of the effects of chemo is that it can tear down that system.

So what could I do to offset these toxic drugs? I began researching all the ways I could build my immune system through nutrition. I found Patrick Quillin’s book Beating Cancer with Nutrition very helpful as I gained a new perspective on healthy eating. A year ago I would have told tell you that I ate healthy, but in comparison to the knowledge I now have, I would give myself a B- on achieving that goal. I evaluated recommendations from friends who also applied holistic approaches to their health, but the best one lead me to visiting Integrative Health. This practice of three RN’s believes in customizing supplements based on blood and urine samples sent to a lab in North Carolina. The tests were affordable and provided insight on what I was lacking in my body to supplement my immune system.

The comprehensive results showed a deficiency of probiotics, digestive enzymes, magnesium, and Co-Q-10. Just a note here, I have been taking vitamins for the past five years and this was the first time I had sought a customized plan based on my body chemistry. Equipped with a nutrition plan (I became a moderate vegan two days after finding out I had cancer), my mission is to take an active role in my healing as I continue to work out and take supplements.

It is interesting to me how the topic of nutrition seems either taboo, controversial, or off limits in the modern healthcare environment. My oncologist never voluntarily discusses nutrition with me. A discussion with one of my nurses verified that she had no opinion on nutrition; however, she did defend the multiple sweet treats offered to patients while in chemo. Don’t they know that “cancer likes sugar” – thus the concept behind the PET scan’s use of glucose to detect cancer cells.

I understand wanting to make patients happy, and treats make people happy. But I see very little evidence once you have cancer, that the ‘system’ is interested in my general health outside of more drugs. On my most recent infusion session, I noticed my hemoglobin count was down. So I asked, “What happens if it dips down even more?” “Well,” I was told, “You’ll probably need a blood transfusion.” Say what? So being the researcher I have been forced to become, I got online and discovered there are a lot of things I can do to bring that number up including some Indian herbs I didn’t even know existed.

Even friends I shared my plan with felt compelled to tell me about people they knew who ate healthy and died anyway! Wow, who knew talking about eating a plant based diet, exercising, and taking supplements could cause such a stir. If I had told everyone that I was going to eat whatever I wanted during treatment, I would have a fan club, i.e., You Go Girl!

While I can’t prove that eating organic and following a plan that eliminates dairy and meat is making a difference (I eat two organic grass fed eggs a week and some fish). I am 14 weeks into my chemo plan with 10 more weeks of Taxol to go and, at the age of 51, I have had energy to work out, almost no side effects from the drugs (mouth sores for a week), and excellent blood counts. My doctor always says to me, “I don’t know what you are doing, but keep doing it.” I know he wants the best for me and is happy that his patient is progressing well because every doctor wants a success story, but the unfortunate thing is that he never asks me ‘what’ I’m doing!

Perception Strategies’ President Kevin Billingsley has authored the following article that can be seen in its entirety by clicking here.

Excerpt - 

In an era of value based purchasing with a focus on inpatient stays, I have estimated that over 80% of the lives touched by health systems in this country are not patients at all, but rather family members, visitors, outpatients, and consumers of everything from equipment to Starbucks. By all means make the patient room environment as clean and silent as possible, communicate effectively with the patient, and ensure that they are fully prepared to be discharged, but the emphasis must still be on the patient’s perception. Observations, opinions, and ultimately consumer decisions derive from that source.

This week I begin the second phase of my chemo treatments. It’s been three weeks since I ended my first 12 weeks (Cytoxan and Adriamycin), and I just started feeling like myself again with more energy and enthusiasm. Now the chemo of choice is Taxol. I will be given this once a week along with Herceptin (non-chemo) from April 12 to June 28. The number of chemo’s is daunting and at times too much to think about. I still find it hard to get over the fact that I will walk into the oncologist office feeling great only to walk out feeling tired and drugged.

I often wonder if the clinical staff really understands what the patient is thinking when they come for treatments? For instance, do they realize how much we dread the drugs, the lost time sitting in a chair, and hearing about all the side effects? Do they know that we (I hope you don’t mind that I speak for all cancer patients) are going through a persistent mental countdown until the last time we have to be in “the chair”?

If they understood, perhaps they would talk to me differently, i.e., remind me that I am halfway through the chemo, tell me how great my sparse eyebrows and eyelashes (which I am praying I get to keep) look. To be honest, I not only want them to be incredibly proficient, I want them to be cheerleaders! Lest you think I am asking for too much, there is a tradeoff. I am prepared to forever praise the infusion staff for their dedication, hard work and teamwork. Already, my admiration for the clinical staff grows with each visit.

During all of my experiences, I have found the most empathetic and caring clinical and frontline employees are ones who have had a personal encounter with cancer. They talk to me as if we have been long lost friends and they take the time to listen to me when I share what I am going through. Going back to my first day in chemo, it was the phlebotomist who made me feel welcomed and cared for as she shared that she was a two-time survivor of cancer and said that I was in good hands.

One positive thing I can count on each time I enter the Oncology office is my oncologist’s attitude. This humble yet obviously bright man always greets me with a smile and something positive about my numbers, my attitude, or my strength. He once referred to me as a “super woman.” He is also apparently very perceptive! He is in a real sense the kind of cheerleader I seek.

As a patient in the midst of eight months of therapy for Stage 2 Breast Cancer, it is interesting how healthcare administrators make decisions they think will have a positive impact on the patient experience or, in this case, me. And yet, I constantly see a disconnect between the initiatives I know are out there and what is truly important to me.

What matters to healthcare organizations are things like how many steps it takes to check a patient in, scripted greetings for frontline employees, record keeping for correct billing, and clinical training for new safety measures. However, as a patient, I notice if the person checking me in for chemo is smiling and greets me because she cares, not if she delivers a scripted sentence. Next, I notice if the nurses in the chemo area are working as a team and greet me personally (they should know me after two months). But what is most important to me is whether or not the clinical staff is aligned with my recovery goals.

During my chemo, the young man next to me said that the next time was his last chemo. He hadn’t said anything up to that point so this was obviously top of mind for him. I mentioned to my nurse that they should have a celebration on everyone’s last day of chemo! Her response was, “We used to have balloons for patients but they took them away because of the helium.” Okay, so no balloons, but there are a million ways to celebrate – a special song they play, nurses singing to the patient or signing a card and presenting it, or giving the patient a special treat. You get the idea. I have several calendars marking my last day of chemo on June 14. It’s more important than a holiday to me. I want my clinical team to understand how important that is to me and mark it on their calendars too!

Another interesting observation is that each time I go to chemo a nurse mentions how important it is for me to drink water, but never offers me any. In fact the filtered water dispenser is located on the far side of the waiting room away from the chemo patients. Why don’t the powers that be notice those details and make it easier for patients?

The logic of the chemo registration process also evades me. When I walk into the office, I first have to get a big yellow piece of paper from the registration person. She then has to call me back up to the window to tell me I can go to the chemo area where I place the slip into a slot on the long desk where the nurses are seated. I know this may not sound like a huge deal, but it took a few times to realize that after I put the paper in the slot I could pick a recliner. In the beginning I had to figure that out for myself or stand by the nurse’s station until someone said something.

If they were really thinking from the patient’s perspective, wouldn’t it be better if the registration person (my office has two) walked me back, handed the yellow slip to the nurse, and announced me. She would then have the opportunity to tell me that I was in good hands or say something reassuring. Or better yet, how about no paper. I tell the registration person I am there and she signals to me when I can go back. When I get back to chemo, I sit down and the nurse begins because she already knows I am there.

My final thought – why do I have to sit in a drab green cubicle that has no color, no inspirational sayings, no survivor stories or photos, and nothing but an uncomfortable chair for my caregiver and two large televisions that face only a few areas. When I commented to the nurse about these things, she said, “You should have seen the last place.” I was then told with a degree of pride that a nurse helped design the area. My question is, did the nurse ever sit in the area for five months or ask anyone who had what they might like?

A valuable tool in the patient experience arsenal is healthcare mystery shopping.
Not that going through chemotherapy lends itself to mystery shopping per se, but it is the idea that there are ways to understand what patients are thinking and feeling that allows providers to begin to change the way they think and truly tap into the patient experience.

A couple days ago I spent the whole day in the hospital with a friend who is getting ready to have brain surgery. One of my friends reminded me that I have cancer and I should be taking it easy instead of driving my friend to doctor’s appointments. I explained that the opportunity to help someone else was therapy for my soul. It provided me with a chance to take the focus off me and place it with someone else struggling and needing help. I find purpose in serving others. When you start to serve others, you quickly realize the simple fact that we all need help. And once you realize that, you start to get in the habit of serving others even more.

While in the hospital, I began to observe employees for their desire to serve others. The simplest gestures made the biggest impact – smiling at the patient, giving eye contact, noticing if someone looked lost and offering help before being asked, holding the elevator or door for someone who was struggling to move, using a calm tone of voice, listening to the patients concerns, and conveying a sense of purpose as to why they were there. What would motivate an employee to behave this way? Would the threat of job security, a potential bonus, numerous meetings to identify their weaknesses, peer pressure, a pizza party, acknowledgment from their boss, and/or a pay raise do it?

After years of studying behavior research from a consumer standpoint, listening to clinical staff share their concerns over barriers to service delivery, and now my own experience as a patient, I think it always comes back to a desire to serve others. For years I have shared as a trainer, and believe now more than ever, that the key to motivating employees is to embrace their desire to serve. And this is only achievable when managers are genuinely interested in their employees as people.

During my second chemo treatment, I had a younger nurse who greeted me with a smile and asked how I was doing. I felt she was genuinely interested in me and gave me her undivided attention as she explained what she would be doing. It was my first time to use my port and I was still bruised and sore from surgery three days earlier. She told me to take a deep breath and walked me through the entire experience. She gave me positive kudos when she made connection. I appreciated her upbeat and positive attitude and her cheerleading gave me the impression she was on my side during the journey to be whole again.

I also noticed that she had a great working relationship with the other young nurse and they made a great team when one of them needed help. It is reassuring for the patient to know that everyone is working together for my benefit. I have experienced employees criticizing other employees and as a patient one begins to lose confidence in the organization. Nicole, my nurse, had a genuine desire to serve and she had purpose.

There is no customer service program that will teach employees to ‘punch in’ and then suddenly become loving, caring people. Employees who have a clear idea of what their purpose is on this earth both at work and at home know they are making a difference one patient at a time. A sense of purpose comes from within each of us and it is not something that should be imposed or incentivized.