We are happy to announce nine new international translations of the Flat is Beautiful brochure, available now for download. Spanish, French, German, Arabic, Swahili, Russian, Chinese (simplified), Hindi, and Portuguese are the languages now available.
We extend a heartfelt thank you to Global Wordsmiths for providing translation services for this project.
Global Wordsmiths is a Social Enterprise that provides language translation and interpretation services, as well as language access consulting and training. Every dollar of profit is used to finance their innovative Social Impact Initiatives: providing free translation and interpretation to selected nonprofits, providing quality jobs and growth opportunities for their staff, and helping service providers to build or improve their language access policies and procedures. Their goal is to create and advance a culture of language access awareness, so that translations and interpreters will become more widely available for individuals who need them in order to access services, to integrate and to thrive. [Learn More]
To download a translated brochure, select your language below, or visit our Publications page.
NPOAS founder Kim Bowles presenting a research poster on flat closure at SABCS 2019
We had a successful poster session at the San Antonio Breast Cancer Symposium (SABCS) this past month, presenting a poster with the results of our original research, “Flat closure after mastectomy: are your patients satisfied with the results?”
This research explored the patient experience going flat, including decision factors, satisfaction with cosmesis, provider pushback, and more. Stay tuned for the full report.
The SABCS19 poster presenting NPOAS’ original research on flat closure
The response from providers attending the conference was overwhelmingly supportive, and several surgeons made some great suggestions for avenues to pursue parity which we will be exploring in the coming weeks.
Thanks to all the women who participated in the surveys, to our advisors who helped inform this project, and to the SABCS organizers for giving NPOAS and other advocates a platform to interface with providers and researchers to advance the interests of patients facing mastectomy. And a very special thanks to Charise Isis for letting us use her beautiful imagery from The Grace Project!
We look forward to continuing our work to promote and protect the interests of women going flat in 2020 and beyond.
Want to support our work? Spread the word on social media, volunteer, or donate.
A new resource is up on the website – the Flat is Beautiful video presentation, featuring many amazing flat advocates and advocacy projects. This 6 minute video is an introduction to going flat as a valid, beautiful mastectomy choice. Narrated by Kim Bowles of NPOAS. Transcript below the video.
Transcript:
Hi, this is Kim Bowles, founder of Not Putting on a Shirt. I’m here to talk to you all about going flat – a legitimate and beautiful reconstructive option for women facing mastectomy.
Losing your breasts isn’t fun. And it’s not really a choice for most women – cancer made that call for us. I myself faced this situation in 2016 – I’ll talk about my own story a little later.
For women facing mastectomy, the only choice is… do I try to reconstruct my breasts, or not? It’s a very personal choice. Women consider:
Is it important to me to maintain a breasted appearance?
How much surgery am I willing to undergo to achieve breast mounds?
Are the risks of implants or autologous reconstruction, worth it in my case?
Before the 1990’s, breast reconstruction was largely considered to be “cosmetic” – not necessary. Many women who wanted reconstruction could not afford it because it was not covered by health insurance. For these women, going flat was not their first choice – it was just what they had to live with.
Patient advocates changed this situation by partnering with provider organizations and lobbying to pass the Women’s Health and Cancer Rights Act of 1998. This legislation required most insurance companies to cover the cost of breast reconstruction.
Reconstruction rates skyrocketed in the decades following. Yes, it’s been decades since the 90’s.
Other things have changed since the 90’s as well. Women’s perception of our own worth and of how we define “beauty” is changing… and with it, so is the way we view breast reconstruction.
The WHCRA advocates’ goal was to ensure women could access ALL reconstructive options.
Now we have come full circle.
For many woman today, flat is where it’s at. We have looked at all of our options, and flat is our affirmative choice.
All reconstructive choices are valid.
And they are all beautiful in their own way.
A woman’s aesthetic choice after mastectomy represents her new body moving forward in her life. This is who she is now.
This is her body and her choice.
For some women, reconstructing their breasts does help them to feel whole again. Living flat does not appeal to them at all. That’s their perspective, and that’s ok. That’s the beauty of choice. Women who choose to go flat, on the other hand, have a different perspective – we feel that we are already whole. Many of us simply don’t desire the appearance of breasts, and for others, the price of reconstructing our breasts – to our time, and to our health – is just too high. Many women who initially choose implant reconstruction later decide to explant and go flat for this reason.
For some of us who were diagnosed at a young age, our priority is to get back to life with our kids. We feel that cancer treatment has taken us away for too long already. And we also want to show our daughters that we are not defined by our breasts. This is who we are. It’s ok to be breastless. It’s ok to have scars. We are whole!
Going flat can be a way to take back ownership over your new body after breast cancer. For some of us, it’s reminiscent of when we were kids – we were breastless then too. Breast reconstruction doesn’t give us back what we lost. Facsimiles of breasts may be important to other women, but not to us. Our breasts are gone… but WE are still here.
And we are proud of our scars!
There are many ways to reclaim our bodies after mastectomy. Reconstructing breast mounds is one way… but a smooth, flat chest can be a great blank canvas for individual artistic expression. Mastectomy tattoos play a big role in some women’s healing process. We’ve even heard from women who knew exactly what they wanted their chest tattoo to look like immediately after learning they needed the surgery!
Over the last decade, patient advocates have developed extensive resources for women considering going flat.
From online support groups, to photography projects to magazine articles, to podcasts, to full length memoirs. And there are nonprofit advocacy organizations as well – in the US and the United Kingdom as well – that are working to promote flat as a legitimate reconstructive choice.
It’s all freely available online.
FLAT resources online continue to grow and expand as women learn more about the benefits of this reconstructive choice. There’s even an annual day of celebration every October 7th – “International FLAT Day”. You can find the Flat is Beautiful brochure at InternationalFLATDay.com. It has a list of resources as well as detailed information about going flat and questions to ask your surgeon.
So we’re coming back now to my personal story.
It’s an unfortunate reality that not everyone believes that women can be whole without breasts. And surgeons are no exception.
I’m here today because my surgeon intentionally disregarded my clear directive and left “pockets for implants” remaining on my chest. He thought I would “change my mind” about getting implants. You can visit my website to see my whole story.
To ensure that women recieve full and fair disclosure of ALL of our reconstructive options, and to ensure that our informed consent respected, EVERY TIME, women must speak out. That’s why I’m here talking to you. Education is a big part of the solution, but it’s not the whole picture.
You can learn more about my work at Not Putting on a Shirt.org
I’ll leave you with this lovely photograph that we saw earlier – this is from a photography project called The Breast and the Sea. It’s a collaboration between Miana Jun, a photographer, and patient advocates.
Whether you choose flat, breast reconstruction, whether you’re a unicorn (that’s half flat)… all reconstructive choices are valid, and all are beautiful in their own way.
Interested in helping us break down barriers that women going flat face when trying to achieve an aesthetic result they can live with? Coding for flat closure is one of those barriers, and Not Putting on a Shirt is on the case with our Coding for Flat Closure project.
The problem: there’s no clear pathway to code for for flat closure and revision services. As a result, quite often providers will simply tell the patient they can’t or won’t do the procedure at all. So women are denied services and left with “mangled” chest walls while they’re dealing with breast cancer treatment.
Legislative action is one piece of the puzzle, but that will take some time… we need to support providers who offer these services, right now.
That’s why we are working to facilitate the development of a standard protocol, or pathway, for providers to seek reimbursement for flat closure and revision services… and that involves clearing up the confusion about CPT codes.
Background: what are CPT codes?
Current Procedural Terminology (CPT) is a medical code set maintained by the American Medical Association. It’s a common language for those who work in the medical field – each code is a unique string of numbers that indicates a service or procedure. In the breast surgery setting, CPT codes are used by providers to request reimbursement from insurance companies for the services they provide to their patients – lumpectomy, mastectomy, conventional breast reconstruction procedures, etc.
Here’s the catch: there are no CPT codes specific to flat closure or revision.
Without the proper coding, many insurance claims are denied… as too many women seeking revision surgery have discovered.
One solution to this problem might be to lobby for a new, unique CPT code. However, this becomes complicated very quickly. When you add a new CPT code to the mix, by definition any value assigned to it has to be taken away from an existing code – and that means that we might inadvertently worsen reimbursement for mastectomy itself. Not good!
So we are left with selecting a code from the existing list – but which one?
Reviewing the candidates
Our review has determined the following short list of options for coding for flat revision (note: “modifier -22” can be appended to the initial mastectomy code (19303) if the contouring work is done during the initial surgery.)
exact code depends on surgical field size (6.37 RVU)
Other considerations are procedure specifics, code valuation, and the status of a code as “unlisted”:
Procedure Specifics. The choice of code for any given revision procedure may depend on the details of exactly how the procedure was performed.
Valuation. Each CPT code is assigned a value by the AMA, called an “RVU” (Relative Value Unit). A higher RVU means a better reimbursement rate.
A note on “unlisted” procedure codes. Because these codes are non-specific, providers must submit supporting documentation so that billing can determine coverage and payment. This presents an additional burden on providers.
Not Putting on a Shirt will continue to work with stakeholders to produce a workable protocol for CPT coding for flat closure and revision services.
Want to help? Contact us below, or donate to support this project.
We welcome your input! If you’ve experienced (or struggled with) coding for flat closure or revision services, or if you have expertise in medical coding and want to share your insight, please send us a message. We’d love to talk to you.
SDM is about patient autonomy and informed consent.
Shared decision making (SDM) is a collaborative model of clinical decision-making that ensures the patient’s values and priorities are centered during the decision making process. It represents a philosophy of clinical practice that restores and protects patient autonomy and informed consent, and it is one of the avenues by which clinicians can achieve their goal of providing patient-centered care.
What is patient-centered care?
In patient-centered care, the individual patient’s specific health needs and desired health outcomes are the driving force behind all health care decisions and quality measurements. Providers consider the patient’s emotional, mental, spiritual, social, and financial needs while providing optimal clinical care.
The proximal outcomes—the patient feeling known, respected, involved, engaged, and knowledgeable—are desirable in and of themselves and may mitigate a patient’s distress associated with illness and uncertainty.
According to the NEJM Catalyst, patient centered care produces the following benefits for both patients and providers:
Improved satisfaction scores among patients and their families
Enhanced reputation of providers among health care consumers
Better morale and productivity among clinicians and ancillary staff
Improved resource allocation
Reduced expenses and increased financial margins throughout the continuum of care
Why do we need SDM?
At its core, SDM is about returning agency to the patient in the healthcare decision making process against a historical backdrop of paternalism in medicine. In SDM, the process is truly shared between the patient and the provider – the patient brings their individual needs and preferences to the table, the provider brings their medical expertise, and together they come to an optimal decision. This optimal decision serves both the patient’s specific personal needs and preferences, AND their medical needs.
For mastectomy patients facing the reconstruction decision, SDM is critical to improving patient outcomes. A 2017 study out of Ohio State University found that less than half of patients undergoing mastectomy made a “high-quality” reconstructive decision that was consistent with their values and priorities. And one of the contributing factors was that patients were not adequately informed about their options. Clearly, there is room for improvement in the decision making process.
Patients who choose flat have different priorities
Multiple studies have confirmed that the population of patients who choose to go flat from the outset has distinctly different values and priorities that lead them to this path, vs. the population who chooses breast mound reconstruction (BMR). For women going flat, it’s absolutely critical that we not only have full information about our options, but that our preferences guide our decision making process.
Patients who choose FLAT
About 45% of patients.
want to avoid additional surgery
do not consider a breasted appearance to be important
worry about health impact of implants
tend to be older (over age 60, 4/5 choose flat)
Patients who choose BMR
About 55% of patients.
accept the possibility of additional surgery
want to maintain a breasted appearance to “feel whole”
do not want to use prosthetics
tend to be younger
It’s clear that for mastectomy patients facing the reconstruction decision, the “right choice” will be completely different for different individual patients.
“The ideal approach to breast reconstruction for one patient may not be the ideal for another. Individual circumstances, values, goals and preferences vary… every patient’s needs are different, and the right approach for breast reconstruction is not just about what is medically appropriate and reasonable.”
According to Dr. Minas Chrysopoulo of PRMA Plastic Surgery in San Antonio, multiple studies across several medical and surgical specialties have shown that shared decision-making yields many benefits when compared with the traditional “doctor knows best” process (from his 2017 Doximity article):
Improved patient education
Decreased patient anxiety
Decreased decisional conflict
Appropriate patient expectations
Improved patient satisfaction
Improved patient outcomes
Sounds great! How do we get there?
Implementing SDM: the SHARE model
The US Department of Health and Human Services has developed a user-friendly model for clinicians called the SHARE Approach: Essential Steps of Shared Decision Making (SDM). This model outlines five steps health care professionals can take to ensure that they are effectively implementing SDM with patients during clinical encounters. The steps were designed to incorporate the essential elements that have been defined for SDM.
Image from the Agency for Healthcare Research and Quality AHRQ
Step 1: Seek your patient’s participation. Communicate that a choice (or choices) exist and encourage your patients to become involved in the conversation, while also being sensitive to the fact that under stress (as with a cancer diagnosis), some patients may need more direction than others.
Step 2: Help your patient explore and compare treatment options. This step is about ensuring the patient is fully informed, by discussing the benefits and risks of each option. Patients will receive and process this information in a way that centers their preferences, and can use the clinician’s guidance to ensure they understand the medical situation to the maximum extent possible for them.
Step 3: Assess your patient’s values and preferences. As the discussion progresses, the patient will express their assessment of each treatment option. The clinician assesses the patient’s understanding and support their process.
Step 4: Reach a decision with your patient. Collaborative decision making will involve the clinician listening to the patient, and the patient listening to the clinician, with give and take and an eventual decision arising from that process.
Step 5: Evaluate your patient’s decision. In a final review of the decision, the clinician evaluates the plan from a medical standpoint.
Watch Dr. Chrysopoulo’s presentation on SDM at ASPS 2018:
Decision Aids
The existing literature suggests that decision aids reduce decisional conflict, improve self-reported satisfaction with information, and improve perceived involvement in the decision-making process for women considering breast reconstruction (Berlin et. al., 2019).
The Dartmouth-Hitchcock Center for Shared Decision Making has a great list of resources for implementing SDM in clinical practice, including decision aids, toolkits, e-learning resources, and more.
According to the National Institute for Healthcare Reform, barriers do exist that slow the widespread adoption of SDM in clinical practice, including lack of reimbursement for physicians to adopt SDM under the existing fee-for-service payment system that rewards higher service volume, as well as several other concerns (NIHCR Policy Analysis No. 5, 2011).
Change isn’t easy, and every clinician has reasons for the way they operate. However, the general principle of keeping an open mind and considering the possible benefits of making a change definitely apply. The benefits for both patients and providers of SDM and patient centered care more generally are well characterized.
“There is no doubt that this approach [SDM] can increase emotional effort and at least initially, may prolong the length of consultations. However, as with a new surgical technique, familiarity improves comfort level and efficiency. Regardless of reimbursement model, improved patient outcomes and satisfaction can only help your practice.”
“Shared decision making”… shouldn’t the decision belong to the patient? The term grates for some women, especially given the history of paternalism women have faced (and sometimes continue to face, unfortunately) when facing mastectomy.
“The rejection of medical paternalism in favor of respect for patient autonomy transformed the patient-physician relationship. Historically, medicine and society subscribed to the ethical norm that the physician’s main duty was to promote the patient’s welfare, even at the expense of the latter’s autonomy. A central assumption of the paternalistic framework was that physicians, because of their medical expertise, knew best what was in the best interest of patients. Accordingly, physicians decided which interventions would promote patients’ welfare; patients, for their part, were expected to comply.”
SDM is about returning agency to the patient in the healthcare decision making process against this historical backdrop. The patient always retains “veto power” in medical situations (unless they’re declared incompetent, which is rare and a court ordered process). The right to refuse medical treatment is sacrosanct because consent is the foundation of all medical treatment – it’s what distinguishes consensual treatment from battery. In this sense, treatment decisions do belong solely to the patient.
This site contains copyrighted material. Not Putting on a Shirt’s educational materials and resources on this site are freely available for “fair use” (Title 17 U.S.C. Section 107) in accordance with our mission to advocate for optimal outcomes for those who choose to go flat after mastectomy. The copyrighted material on this site is distributed for educational purposes without profit – all donations to Not Putting on a Shirt directly fund our advocacy work. If you wish to use copyrighted material from this site for purposes that go beyond “fair use”, you must first obtain explicit permission from the copyright owner. Please direct requests or questions to info@aestheticflatclosure.wpcomstaging.com.
