Helping women with breast cancer: An interview with a Guardian Nurse

I met Betty Long of Guardian Nurses Healthcare Advocates at my first meeting with the National Association of Women Business Owners, Philadelphia Chapter. Though I’d been in business for nearly 18 years, I’d not known of this amazing group and its network. Betty was one of the day’s speakers, and impressed by her, I made a mental note to talk with her.

It would be a year later before I made that call. When I did, she swung into action. It was a ‘wake-up’ call at 2:30 AM that bumped her to the top of my very long ‘to do’ list. Severe chest pain woke me up but kept me in bed; it was hard to move. Fearful of getting poor quality care, I decided I’d rather die than go to the ER and ‘toughed it out.’ A few hours later – still in pain and still alive – I concluded it might not be a heart attack after all, consulted Dr. Google and realized this had happened once before. It was my gall bladder, acting out.

I called Betty and she assigned one of her nurse advocates, Joanne Simone, to help me. Still fearful of going to the hospital – even for tests – Joanne went along with me. By the time I met up with her, she’d researched surgeons, assessed their credentials and reputations and identified two, one of whom was available the following day if I needed surgery.

I’m convinced I got better care with Joanne along and was certainly more relaxed having her there. She got records of the tests – including all prior tests done at that hospital over the years (by the way, something my physician had not been able to do) – and the event ended happily, with no problems detected and no surgery needed.

I did not know such peace of mind was possible. With the Guardian Nurses’ team helping me, we’ve created a care network here in Philly. If I ever get sick, I know I’ll get good care.

My own problems solved, I took the opportunity to talk with Betty about Guardian Nurses and learn more about the company. I’m pleased to share what I learned with Disruptive Women in Health Care readers.

Disruptive Women will be focusing on breast cancer during this month. What’s been your experience with women experiencing breast cancer?

Betty Long, Founder of Guardian Nurses Healthcare Advocates

Since our founding, we have advocated for hundreds of women with breast cancer. Depending on when they reach out to us for help, we have done something simple like explaining what a genetic test result means to the more complex task of guiding them from their abnormal mammogram through their biopsy, eventual surgery, chemotherapy and radiation.

We are able to hold their hand, both literally and figuratively, to guide them, answer their questions, accompany them to their appointments, take notes, write summaries of visits, help them select physicians, ask questions of physicians that maybe they don’t know to ask or don’t feel comfortable asking, and finally, minimize or resolve any problems or issues with billing, claims and/or insurance providers.

Our role in their journey is to make sure that clinical issues are addressed, that financial or insurance problems are eliminated, and that the patient has peace of mind about her decisions. Dealing with cancer, any type of cancer, can rattle your world.

Take for instance a recent case involving a 40-year-old woman who after a thorough diagnostic work-up was diagnosed with stage 3 breast cancer. At her request, we accompanied her to her post-biopsy appointment with the breast surgeon at a suburban medical center. The surgeon explained to her what the test results showed and recommended that she have a total mastectomy followed by chemotherapy. The patient was despondent, not only knowing that her cancer had spread to other organs but to hear that his recommendation was to remove her breast.

Following the appointment, we talked about how she felt getting a second opinion. She admitted that she “liked her doctor” and “didn’t want him to think she had no confidence in him.” Plus, she said, “Who would I go to?” We were pleased to be able to offer her not only practical suggestions, but also reassure her that a second opinion was her right, that her insurance would pay for it, and that she could bet the surgeon would be pursuing his own second opinion if his wife was in the same position!

She agreed and seemed relieved that we would help in this next round. After all, her head was spinning! The next day, we began to gather all of her diagnostic records, both digital and paper, so that once we identified another breast surgeon for the second opinion consultation, we could make sure all of her previous records were sent for review.

Taking into consideration the patient’s insurance, her personal preferences for another surgeon, we eventually presented to her two choices and reviewed with her why each surgeon had been selected. Once she decided whom to see, we called that office to facilitate a timely appointment.

Though nervous about the second opinion visit, the patient appreciated that we were there to support her. She admitted that she “had so much on my mind, I don’t want to forget what I want to ask.” One hour later, she was even more confused as the second surgeon suggested that she have no surgery at all. He presented his opinion that there was no value in removing her breast, disfiguring her body, for no solid clinical reason. Instead, he offered, he would suggest that her treatment involve just one chemotherapy agent.

Second opinions can often be validations of suggested treatment options or, as in this case, complete opposite suggestions! And for this patient, who did not want to lose her breast, she emotionally connected with the chemotherapy only suggestion. But, given the circumstances, we strongly encouraged her to then seek a third opinion from another surgeon. This doesn’t happen all that often that two opinions are so vastly different from each other, but when it does, it’s smart to take the time to seek the third opinion. Especially when one of those opinions is to remove your breast!

One week later, she was meeting with another breast surgeon, who explained both previous treatment suggestions and heard from him that he also suggested the non-surgical treatment. He gently explained to her that while her breast cancer was advanced, that it was not a death sentence and that she should try to reset her expectations. Rather than prognosis, he advised: “look at your breast cancer as a chronic disease. You’ll have to be in treatment long-term, there will likely be times that you’re not actively being treated, but you will always need check-ups.”

She appreciated the surgeon’s candor and believed that at least now, she had all the information she needed to make a solid decision. Our nurse’s support and advocacy was critical to her reaching that point and in supporting her decision as she began treatment. While she has learned a great deal about the health care system through her diagnosis and treatment, and feels more empowered on her journey, she also knows that we are just a phone call away.

Do you have any advice for those of us who don’t have your credentials or skills but who offer support at times like that?

Dealing with a breast cancer diagnosis can be frightening, disabling, and undeniably life changing. What I would suggest for anyone supporting a woman through breast cancer treatment is to meet her where she is at. That’s what we do with our patients. That means seeking to understand what she’s feeling, what she’s thinking, what her understanding of her diagnosis and treatment plan is, and not making any assumptions. In other words, asking her, “How can I best support you through this?”

Each patient has their own unique response to a health care challenge so it’s not up to you to decide what the right response is. Other than that advice, give her a hug every now and then!

I’ve seen the trailer for the movie “Nurses: If Florence Could See Us Now” and I know Guardian Nurses are featured in the film. How did that happen?

I was contacted by Kathy Douglas, the California based filmmaker who is also an RN. Kathy knew of our work advocating for patients and invited me and my team to be interviewed when her crew was visiting Philadelphia for their other interviews. Upon hearing some of our ‘success stories’ and the so very positive feedback that we receive from our patients and clients, she decided to include, with the parents’ permission, one of our most compelling stories in the film. We’re very excited about the film not only because of our role in it, but because of its positive portrayal of nurses and our diverse roles.

Betty, tell me more about Guardian Nurses. What was it that catalyzed your founding of the company, who are your clients and what do you do for them?

In the years prior to my founding Guardian Nurses, my father and several aunts and uncles experienced multiple episodes of critical care in the health care system. In accompanying them to their appointments and into the hospital, I thought, “What do families do who DON’T have a registered nurse do? Who can explain things to them? Who can help them figure out what their next steps are?” It just made sense to me that as a nurse, I would provide that level of patient support. And so, those personal experiences, as well as many professional ones, planted the seed for growth.

After the first few years of working with individuals who hired us, I reached out to fraternal organizations, companies, and insurance brokers to offer our services through them. That enabled us to work with clients who may not have had the financial means to pay privately for our services. We are then able to render our advocacy services to the employee or his family member and we are paid by the employer, the union or the broker. Through those relationships, we have been able to reach thousands more patients.

Are there special skills or personality characteristics that make someone especially suited to working in your company?

Because of the nature of our services, we are particularly interested in nurses who have diverse clinical experience in addition to experience working with insurance claims and appeals. In terms of personality traits, we always look for someone who is empathetic, compassionate and who hasn’t lost the light in their eyes when it comes to helping patients.

A few months ago, I was with a client in the Midwest who was distracted by worries about a parent 1,000 miles away who needed support during important medical discussions. I called Guardian Nurses and in a matter of hours, your nurse advocate found a nurse to accompany the parent to the physician visit and help until my client could arrive on the scene. How was it possible for her to find help so far away so quickly?

We have established a network of nurses all throughout the United States whom we can call not only to provide personal accompaniment to patients but also provide the Guardian Nurses’ level of service to them following their appointments.

If you could offer employers advice about the health of their employees and covered dependents, what would that be?

Providing comprehensive health care insurance is just one component of your overall benefit package because when it comes down to being “smart healthcare consumers,” employees need additional help. Services like ours contribute to better utilization of health care resources and often better clinical outcomes, which is a definite win-win.

Through our repeated work with our corporate and union clients, we have consistently shown that not only can there be ‘hard’ dollar savings from lowering the cost of care and getting employees back to work faster, but the ‘soft’ (non-financial) value of restoring employees’ peace of mind, including increased presenteeism, are some of the additional benefits we’ve proven.

I see on your website that you’ve appeared on Dr. Oz’s show. What was that like?

It was a great thrill to be a guest on the show and to meet Dr. Oz. He genuinely wants to educate his audience to become better healthcare consumers and so I appreciated him inviting me to address the issue of “physician / patient communication.” He and his staff were very welcoming during our visit. After the taping of the segment, Dr. Oz made it a point to tell me that we “are doing important work” and I responded, “So are you.” What else can I say, He’s terrific!

You, too, Betty. You and all the other nurses out there…you rock!