When it comes to making decisions in your healthcare, my guest, Dr. Minas Chrysopoulo and I present the first in a series on the topic of shared decision-making in the summary of Episode 9: Shared Decision-Making on the DiepCJourney podcast. Toliman Health was founded by Dr. Minas Chrysopoulo, an internationally recognized expert in breast cancer reconstruction and shared decision-making. Dr. Chrysopoulo is the creator of Toliman’s flagship app, Breast Advocate®
As co-leads of the WHIS Shared Decision-Making Expert Group our goal is to facilitate the adoption and practice of shared decision-making (SDM) throughout healthcare systems and across all medical disciplines. The “why” of the informative approach to decisions in healthcare is multi-faceted. It encompasses the patient’s preferences, values, support system, and expectations for outcomes.
Back to Our Favorite Topic: Shared Decision-Making
It is important in so many ways. Shared decision-making is not actually a new concept. It has been around since the 1980’s. Being one of the core values for Obama Care it brings immense value to health care and was the premise and why it was used for the Affordable Care Act. It was not just to improve healthcare economics and the healthcare system but to improve value for patients.
Dr. C states, shared decision-making is a collaborative approach to deciding a treatment plan. He recalls his training in med school and describes it as an apprenticeship where you watch, observe, and apply. A lot of what he observed in his training between patients and physicians was very paternalistic. The physician gave his opinion on what he or she felt should happen based on the patient’s diagnosis. The frequent response was, “OK, Doctor, whatever you think is best.” That was then.
Dr. C Develops His Own Shared Decision-Making Practice
When he started his practice in breast reconstruction, he wanted to be more informative and encourage the patient to be further involved. There is nothing more important to the individual than their well-being and people need information to be part of the conversation. He shared this informative approach is a step up from what he learned and observed in medical school but he knew it did not fully engage the patient.
Dr. C makes describes how a patient tells a loved one that once they have been to the doctor they come home and say, “This is what I was told I should do.” The family member may ask them “why” they were told the option the doctor gave. Not knowing the “why” is the key. He points out in the informative approach at least the patient should be able to answer the why. The more you know the better you will feel about decisions.
Being Involved in the Decision Making Process
Shared decision-making is exchange of information, opinion, and anything each party feels is important in making the best decision for the individual at that time based on the situation. The physician brings their clinical expertise, evidence-based medicine, what the studies say and the patient brings their situation, their social set up, what they are looking for, what they need, goals, preferences, and values. Whatever is going to impact the decision should be discussed in this exchange of communication.
Shared decision-making has been shown in multiple studies across a variety of medical disciplines it improves clinical outcomes. Patients do better when they are engaged in shared decision-making and tend to be much happier. Critical points to remember about shared decision-making:
- You improve patient education.
- Patients understand the why and why it relates to them in their situation.
- It helps set patient expectations.
- Patients have buy in, even when things get “bumpy.” When a patient doesn’t understand why they did what they did, these bumps in the road can become magnified.
- Knowing the pros and cons and why it relates to the patient is important.
He completes his thoughts by pointing out decisional regret is huge and is the last thing a patient needs. Shared decision-making reduces decisional regret and conflict helping the patient to have a better overall outcome.
Developing Trust Through Shared Decision-Making
I add my thoughts to the conversation. Bi-lateral communication is when two people talk and listen to each other. This is the very core of shared decision-making. We chat about developing relationships of any kind and how they begin with communication, exchange of thoughts and ideas. Dr. C makes a powerful comment by asking, “And what does meaningful conversation lead to?” Almost simultaneously we say, “TRUST!”
When information is traveling form the patient to the healthcare provider shared decision-making takes place. Bi-directional sharing of information is imperative. I share my thoughts with Dr. C explaining shared decision-making is the art of practicing medicine. He added he feels it is also the most ethical and practical way of practicing medicine.
Take Time to Consider Your Preferences and Values
We continue our conversation by underscoring the importance of patients taking time to list those things in their life that will be impacted by a healthcare decision. Here are some thoughts from our discussion:
- Who is your support at home?
- What line of work are you in?
- How much time off are you allowed?
- Is your employer flexible with time off for surgery?
- What is your physical space like at home? Apartment, home, steps?
- What activities do you most want to get back to that you really enjoy?
Many patients are still not comfortable asking difficult questions. Dr. C makes another powerful statement.
What questions should you ask? Any questions you want!
Minas Chrysopoulo, MD, FACS
A misconception about shared decision-making is that asking a physician to help you make your decision is not necessarily part of this type of communication. When patients are overwhelmed with emotion and they say to the physician, “Tell me what you would do if it was your wife.” this is also shared decision-making. The patient verbalizing how much involvement they want is a decision. The patient is being allowed to have the level of autonomy they need.
My Personal Experience with Shared Decision-Making
I enjoyed being able to revisit my own experience when I had my consult with Dr. C for my DIEP flap breast reconstruction. He recalls how clear cut I was. I made my decision pretty quickly, knew what I wanted fairly early on, and knew the risks. Dr. C remembers I was aware of what could happen both good and bad in terms or risks but I knew the why. It was a team approach and in the unlikely event there was going to be a problem, I felt like I was going to have the support on both sides of me from him and my husband.
Choosing a Tool to Help with Shared Decision-Making
I want to begin this paragraph by going straight to a source I frequently share with patients. Breast Advocate app is a free decision tool developed by Dr. C. It is available for iPhone, Android, tablet, iPad and is a shared decision-making app for breast cancer surgery. Breast Advocate app covers all options for reconstruction. Here is some of the other content and resources it provides:
- Information about chemotherapy and radiation
- Nutrition
- Emotional support
- Male breast cancer
- Lumpectomy, mastectomy, aesthetic flat closure, nipple sparing mastectomy
- Lymphedema reconstructive surgery
- Restoring sensation to the breasts and nerve preservation at the time of mastectomy
- Evidence-based articles, studies, and research
- Metastatic disease
There is much more but Dr. C points out it is the core value and main idea to help patients decide which type of surgery was best for them. Irrespective of your breast cancer diagnosis or if you have a gene mutation putting you at higher risk of getting breast cancer it will guide you through your options.
Going Beyond the Breast Advocate App to Customization for Shared Decision-Making
He points out Breast Advocate is organized in such a way to make it situational and catered to individual patient needs and preferences. The Wizard on the app allows you to set your preferences up and change them over time as your situation changes because it often does through treatment, surgery, recovery, and survivorship. Toliman Health is the company he created on paper to develop the Breast Advocate app. Because of the success of the Breast Advocate app developed for his patients, Dr. C says Toliman now has a job to do.
Toliman is about expanding access to shared decision-making by white labeling Breast Advocate. Toliman has provided everything individual healthcare systems need to customize care for patients at their center. Dr. C points out it is about access and the adaptability to apply it to other specialties in healthcare beyond breast cancer.
Final Thoughts
I ask Dr. C what he feels the biggest frustrations but also hope is for shared decision-making as he sees it now. He feels lack of adoption among physicians is the biggest barrier in shared decision-making. There are many perceived barriers. The final seven to eight minutes of this podcast are filled with sage words of wisdom, reflection, and hope from Dr. C about shared decision-making. I encourage you to listen to the entirety of Episode 9: Shared Decision-Making here. Thank you always Dr. C for discussing one of our favorite topics, shared decision-making.