Renal cell carcinoma (RCC) affects more than 400,000 people worldwide each year, and because medical advancements have made it possible for people to live longer and better than ever before, their experiences and preferences are an important part of their journey. In this interview, we talk to Dr. Harm van Melick, a consultant urologist, and patient advocate Steve Pointon, who is in remission from RCC, about their experiences with shared decision-making and the effects it can have on RCC patients.
Would you kindly introduce yourself and describe your background or previous exposure to renal cell carcinoma?
Stephen Pointon, I work with a nationwide kidney cancer support network as a patient advocate and licensed counselor. I volunteered at a nearby hospice while I was going through my counseling training, and now I operate my own practice and work for a social enterprise. I have now been in remission since 2018 and I continue to be committed to assisting people through their cancer diagnosis and treatment journeys after being diagnosed with RCC, going into remission, and then learning cancer has returned, all within the space of 18 months.
Dr. Harm van Melick: I’ve been a consultant urologist for more than ten years, and I currently practice in Nieuwegein and Utrecht, the Netherlands, at St. Antonius Hospital. Uro-oncology, robotic and laparoscopic surgery, and image-guided diagnostics are my areas of expertise. I have spent my career developing and implementing shared decision-making tools to assist patients with their medical treatments.
Over the past ten years, the kidney cancer treatment pathway has increasingly incorporated shared decision-making. What is it, and how may those who have RCC benefit from it?
Steve: I felt a significant loss of control over my future when I was originally diagnosed with RCC. Any effort we make to include patients in decisions about their care following a diagnosis, in my opinion, will go a long way toward giving them a sense of control. Open communication with your healthcare provider, as well as being involved in and informed about your treatment, are all part of shared decision-making. A shared decision-making approach ensures that you can comprehend what’s happening to your body and feel empowered by that information, even if there is only one treatment option.
Van Melick, Dr. Over the past ten years, there have been substantial changes in RCC therapy options and care pathways, which have changed the way we must approach RCC care. Simply said, shared decision-making is a strategy in which medical professionals present patients with the greatest information available so that those with an RCC diagnosis can take into account their own beliefs and preferences while selecting the most appropriate therapies. The emphasis on open communication makes a difference.
The conventional approach of merely instructing a patient on what to do based solely on clinical data and results fails to take into consideration their needs and wishes as a person with the ailment. We should refrain from making a person’s final selections because various treatment alternatives can have a variety of effects on their life. Healthcare professionals continue to be involved in shared decision-making as specialists to help educate, enlighten, and make sense of complex disease management. It’s crucial to keep in mind that those who have RCC are experts on their own bodies and disease experiences.
Steve, how did such a shared decision-making process actually work for you when you were receiving treatment?
Steve: After my initial remission, when I learned the RCC had come back, I went through the rituals of a second diagnosis and treatment preparation. All of the various therapy options, whatever one my doctor suggested, and the possible side effects were explained to me. The decision was then mine to make. When I had young children, I wanted to be here as much as I could to watch them grow up.
My medical staff made it clear that I could discontinue the treatment at any point even after I started it. I felt that I had the final say in my care after talking with my doctor and listening to their advice. I don’t have any doubts or regrets about my experience now that I’ve had my therapy because I chose it.
What advantages do collaborative decision-making processes have over conventional consultations?
Van Melick, Dr. In the 1990s, collaborative decision-making was initially studied in academic literature; since then, its use has grown. The research demonstrates a number of advantages, including decreased decisional regret, increased treatment compliance and satisfaction, increased involvement and improved information among the general public, and the achievement of patients’ goals. Additionally, you notice a decline in the number of surgical interventions, a decline in practice variation, and a decrease in overall cost.
Most critically, however, letting patients with RCC choose their own alternatives allows them to choose the level of quality of life they desire while undergoing therapy.
Steve: The factor that requires joint consideration is quality of life. I am affected by the treatment choices every day of my life because I have RCC. While my medical staff was knowledgeable and helpful, they lacked my viewpoint and lived experience to fully get what I was going through.
This is where participation in patient support groups and social interactions throughout the joint decision-making process can make a difference. I learned new things about living with RCC and the road I was on when I connected with my local group. With the knowledge that I would be heard, I could talk to my doctor about what I had learned.
What factors should healthcare professionals take into account when implementing a consultation process for shared decision-making?
Van Melick, Dr. We as healthcare professionals have a foundation in clinical research that a person with RCC won’t. To help our patients understand, we must repeat facts as much as possible in clear, basic English while avoiding medical jargon. We must also support them in making decisions without harboring any personal biases toward particular treatments.
To increase communication with the patient and provide assistance when needed with delicate issues, the entire integrated care team should be involved in this process, including specialty nurses.
Steve: I would ask that when someone comes to a healthcare professional to talk about treatment, they be willing to listen. Even though you frequently administer this treatment, your patient could be aware of alternative possibilities they’d like to investigate. Unfortunately, not all healthcare professionals are willing to engage in these conversations and this can be unpleasant or disappointing when it has such a significant influence on your life.
What’s the next step for us?
Van Melick, Dr. Clinically, the majority of SDM recommendations deal with cancer in general. For instance, while the European Association of Urology guidelines do include specific recommendations for RCC, neither the European Society for Medical Oncology guidelines nor the European Society for Medical Oncology does. As the suggested strategy in RCC, shared decision-making is only highlighted by the American Society of Clinical Oncology.
Through the development of decision aids and workshops, organizations like the International Kidney Cancer Coalition (IKCC) have accomplished significant progress. I expect to see the development of a shared decision aid tool that would improve practice standardization and better help healthcare practitioners, especially in the face of novel treatments, given the dynamic nature of RCC treatment, the developments in the field, and potential regional heterogeneity.
Steve: People who have been diagnosed with RCC need to feel as empowered and in charge of their medical care as possible. Local patient support groups ought to have access to data and resources that benefit their neighborhoods. I hope that persons with RCC will start to experience collaborative decision-making more frequently.