Lisa Salberg: Shared decision making: the patient's perspective. A global vision
The shared decision-making process it is a model that promotes patient involvement, especially in the decision-making phases regarding treatment and in the presence of different therapeutic options. Involvement can be defined as “the patient's ability to play an active role in decisions and plans regarding his care.
We publish large passages of the video message sent by Lisa Salberg founder and CEO, in the United States, of the Association for HYPERTROPHIC CARDIOMYOPATHY (www.4HCM.org) at the conference "Advances in Cardiomyopathies", which was held in Florence on 9-10 September , explaining how the concept is declined in the United States.
"We want patients to be excited about the future and understand their options and know how to ask smart questions that will help them achieve their goals", he said.
Transcription by Ming Ou Wei
Lisa Salberg
(…) First of all, I think we must all be sure that we are talking about the same definition. Shared decision making, it sounds wonderful, means collaboration. If you look up the definition on different websites or different government agencies, at least in the United States, you will see it defined slightly differently on each site.
The Mayo Clinic has a service called Clinic Shared Decision-Making National Resource. They define it, in part, as: "Patients and doctors have different skills when it comes to making consequential clinical decisions. While doctors know the information about the disease, the tests and the treatments, the patient knows the information about their body, their circumstances, their life and health care goals. It is only by working together to make decisions together that the ideal of evidence-based medicine can become a reality". It sounds really surprising, but maybe we can delve a little deeper into this definition because patients need to have a better understanding of what their diagnostic path is and what their type of Cardiomyopathy means.
By others (for example the site "cancer.gov") the shared decision-making process has been defined as: "In medicine, a process in which both the patient and the healthcare professional work together to decide on the best healthcare plan for the patient. When making a shared decision, the patient's values, goals and concerns are taken into account". (...)
So, and this is an important question - What does shared decision making mean? But I want to ask a somewhat simpler question - What does the word mean "shared"? There are different definitions: sharing is the role played by a person in obtaining a result, or in telling (thoughts, feelings, experiences, etc.), together with someone else. So we share with each other. But we must ask ourselves if everyone participates in this discussion with the same evidence and the same knowledge !! “Shared” not only means that you want to know what the person's values, culture or preferences might be, but I think it also means that there is a guarantee that we are speaking the same language and that we share information on an equal footing.
I think there are 5 essential steps of shared decision making and I will tell you that I personally see a potentially negative aspect in each of these steps, which we all need to know. I speak mainly to the medical community:
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- Seek your patient's participation. There are many different ways to do this. This is a science in itself and takes time to establish trust and understanding and have a really good foundation to help create an environment where the patient is part of this process.
- Help your patient explore and compare treatment options. We all have our prejudices, and that's okay, and our doubts, for various reasons. Because we believe that one path is better than another, partly because we have our own decision-making process, and partly because we have considered clinical evidence that leads us to these conclusions. However, not all patients truly have the ability to understand all the different options and need help making this decision.
- Evaluate the patient's values and preferences. Someone might want a path, but if it's not a path that will lead them to their ultimate goal, it may not be a viable option.
- Make a decision with the patient
- Evaluate the patient's decision.
I think it is really important that evaluating your patient's decision does not mean judgment. It means communicating with them assessing what their decision actually means and what possible consequences it actually has and what goals they can achieve by taking that path. It is a process of continuous interaction.
Why is this particularly important in hypertrophic cardiomyopathy (HCM)?
In the most recent Guidelines published in 2020 for CMI by the Scientific Societies in the United States (AHA and ACC) it is a class 1 recommendation, i.e. that shared decision making must be part of the patient treatment process.
Are the dynamics of shared decision-making all the same?
They are not, and there are many pitfalls that can occur if you do not have an adequate assessment of what is really happening in the dynamics of the patient and his family, also based on their cultural dynamics. For example, if a young person makes decisions, there may be family members who have a lot of influence on that person, who could guide their decisions that are not scientifically based.
As we have many familiar cases of HCM, the perception of what happened to a family member can influence the patient and lead to a good or bad decision. So when we're evaluating all of this, we really need to think about family dynamics and whether that person has the resources and the ability to make good decisions for their health goals.
Another example is sport and physical activity. If an athlete is involved, but not only the cardiologist, but also perhaps his or her parents, a coach or a regional or national government agency, is involved in determining what a decision will mean for that patient and their team. So there are a lot of people involved in the decision making process.
When practicing shared decision making with your patient, it is really important to understand the whole dynamic of who is really influencing that individual's decision making, whether it is based on scientific data, and whether they have valid reasoning, or whether the patient it is pulled in a certain direction by the will of another individual. In this case, everything is more complicated.
Is hypertrophic cardiomyopathy all the same? Why is this important?
If someone is making decisions based on the diagnosis of HCM, it is important to know if it is a “sarcomeric” HCM, ie resulting from a genetic mutation in the sarcomeric genes, or if the genetic cause has not been identified. In this case he may have a different disease that requires specific therapy, such as Danon's disease, or Fabry, or amyloidosis, and many other diseases.First we must make sure we have the correct diagnosis and that the patient understands what the genetic analysis entails for them and then for their family.
At this point, are we talking about therapies for an advanced stage of the disease such as heart failure? Are we talking about accessing a transplant list or a transplant evaluation? Is it available in your part of the world? It is not? What are the priority features to access that list? But what if the patient was 75 and we are talking about palliative care? What are that patient's goals? The patient must be reevaluated, but he must have a clear understanding of what, why and how these decisions are made.
All of this takes a long time for clinicians, nurses and doctors across the country and around the world. We don't have 5 hours for each doctor's visit to sit down and have long conversations, and this is where HCMA is stepping up to help you help your patients understand. We will show you a couple of things we have done in the United States and how we are moving internationally, such as in Sweden, or in Italy, with AICARM.
We don't want people to have unrealistic expectations about therapies and lifestyle. But we want to make sure people understand that in 2021, HCM is a treatable disease, that patients can have a high quality of life over a long period of time.
Sometimes, if they are unaware that there are options available to help them feel better, they tend not to want to get involved with therapies and treatments because they find it tiring. We can tell you that many people have benefited greatly from the therapies we currently have and there are many promising things that will come in the future.
We want patients to be excited about the future and understand their options and know how to ask intelligent questions that will help them achieve their goals, so that they are truly valid partners in shared decision making. (..)