The royal family in the U.K. has had a rough start to 2024. The culprit is cancer.
In January, that Sarah Ferguson, the Duchess of York, had been diagnosed with malignant skin cancer during her breast cancer treatment. That same month, King Charles III that he was being treated for an enlarged prostate, and in February, news surfaced that he has cancer. Most recently, Kate Middleton -- also known as Catherine, Princess of Wales -- shared that she also has cancer and is undergoing preventive chemotherapy.
Over 3 months, key members of the royal family have either experienced a cancer diagnosis or undergone treatment. This has serious implications for the functioning of the royal family in their public duties as well as the care of young children.
However, this situation is not unique to the royal family. Cancer can affect anyone.
The complicated nature of the disease within the context of complex medical systems typically unleashes physical, emotional, and financial challenges on families. Unfortunately, most non-oncologists are not adequately prepared to handle these challenges (even though they are often involved in the care of cancer patients) and most health system processes are not designed to tackle these issues proactively. It is not surprising that patients and caregivers often report to their oncologists on the first visit that they feel confused, scared, alone, and lost, without the context to know what to expect next.
We're here to offer insights into how comprehensive care of cancer patients should look.
This process begins with the cancer diagnosis itself, which is a life-altering event that creates tremendous stress and uncertainty. When we think of beating cancer, we often focus on new technology, the latest targeted therapies and diagnostics, health system access, and physician skill and expertise. However, what's often overlooked is the importance of solid caregiver and medical team support during critical periods of illness.
In this early phase of grief and coping, an individual is in a very vulnerable state within a sea of unknowns, making it easy for the ensuing fear to cloud one's thinking and block out helping hands, as they enter a downward spiral of grief and isolation. It is common during this process for a patient to lose identity and privacy, both of which are fundamental rights of healthcare.
Therefore, the medical fraternity holds a critical role in helping patients and families navigate this initially frightening cancer journey. The fundamental job of the medical team is to empower the patient to reclaim control of his/her life with dignity and grace, just as Princess Catherine sought to do with her recent announcement. Beginning with helping the patient and their loved ones understand cancer, the medical team has to try to support the family through diagnosis, treatment, and recovery. Since stress, anxiety, and depression tend to go hand-in-hand during the cancer journey, the patient and the caregivers need tips for coping with the emotional and psychological challenges of cancer.
Another often overlooked component of the cancer journey is financial planning. While we tend to emphasize the toxicity of the treatment itself, financial toxicity is often ignored. The costs of treatment and the impact of cancer on ability to work and generate income need to be discussed with the patient and their loved ones. Many costs can be significantly reduced or defrayed altogether with manufacturer drug assistance programs, food and transportation grants, financial counselors, and other financial aid programs.
Ultimately, cancer treatment in the U.S. needs to invest in the patient experience. The cancer journey must be made more human-centric. Treatment and interventions should align with potentially ever-changing patient preferences.
The 2022 surveyed more than 1,200 patients from the ages of 18 and 50 in the U.S., the U.K., and Germany. The report highlighted four recurring challenges: 1) Information Access, 2) Patient Involvement, 3) Holistic Care, and 4) Organizational Hassle.
- The Information Access challenge highlighted the information overload for patients looking up their symptoms. It can be daunting for patients to understand the nuances of cancer biology and the treatment options available at various stages. There is also a fundamental disconnect concerning survival outcomes reported in trials and the importance of seeking evidence-based treatments that balance efficacy and tolerability to create durability. Fundamental to enabling an empowered cancer journey is pacing patients for a ribbon-winning marathon -- in essence, making cancer a chronic illness, instead of a short-term sprint to a "cure."
- The Patient Involvement challenge highlighted the need for collaboration between the patient and the oncologist in the cancer journey. Care coordination should be streamlined in such a way that it does not negatively affect patient experiences.
- The Holistic Care challenge highlighted the need for more digital tools such as an app to help with mental health and anxiety. Such apps can be enhanced by algorithms that detect unusual or alarming symptoms or behaviors, which can alert the medical team to reach out to the patient as needed. Moreover, all digital tools incorporating patient education should be customized to the specific cancer the patient is getting treatment for, thereby reducing information overload and anxiety.
- Lastly, the Organizational Hassle challenge demonstrated how something as seemingly benign as the transportation burden on patients during treatments can cause a significant financial burden. Again, we often overlook the financial toxicity on patients undergoing treatment.
An investment in patient experience and navigation goes a long way in improving the lives of cancer patients and their loved ones, as they deal with the complexities and "baggage" of the disease. It is helpful to emphasize patients' personal goals along with their unique triumphs, setbacks, and stories. This practice advocates for the ongoing, daily practice of discovering and maintaining the fundamental skills of humanity and empathy to help empower these patients.
After all, when the individual behind the illness emerges, authentic relationships form, creating an opportunity to shine through any diagnosis, setback, or outcome. Indeed, Princess Catherine when trying to encourage other cancer patients on their journeys: "For everyone facing this disease, in whatever form, please do not lose faith or hope. You are not alone."
is the Chief Innovation Officer at Rush University System for Health in Chicago. He writes regularly on topics related to healthcare innovation and technology. is the Director of Oncology at Palomar Health Medical Group in San Diego. He is also a physician scientist, pilot, educator, and national speaker.