At Livestrong, we ask ourselves: What everyday cancer problem will we fix today? We have always strived to find and fill gaps in cancer care. In a survey with over a thousand responses, we asked our community: what are the greatest areas of need for cancer patients, their caregivers, and families? How can we make things better?
In 2019 we identified post-treatment care, patient education, comprehensive quality of life services, and streamlining systems & care experiences as the primary gaps in care for our constituents’. This month, we wanted to highlight a couple of these gaps in a discussion with our community-based Livestrong Volunteers.
Each month, the Livestrong Volunteers and Livestrong staff meet virtually to discuss different topics pertaining to the organization and the cancer space. As a diverse community of people affected by cancer, including caregivers, survivors, and loved ones, we were able to discuss issues and solutions for common day cancer problems from a variety of different perspectives.
In July, we sat down with the Volunteers to discuss two “gaps” in care and possible solutions to improve them. Specifically, we discussed post-treatment care and streamlining systems & care experiences. In the streamlining systems and care discussion, we asked about Volunteers’ experiences when communicating with their care team and loved ones, and how care and communication could be optimized. In our post-treatment care discussion, we asked our Volunteers about their experiences with life after the end of cancer treatment, and what kind of support we should be giving to people coming off cancer treatment today.
As interns, we were given the opportunity to act as moderators and participate in the discussion. This experience was very eye-opening to the realities of cancer and provided us with the opportunity to learn more about Livestrong’s constituents. We learned about the experiences shared by the Volunteers during and after treatment and talked about all the ways things could be improved. Sitting down and openly discussing these subjects allowed for everyone to brainstorm and creatively propose different solutions to common cancer problems.
Streamlining systems & care experiences
In the United States, one of the most recognized gaps in cancer care is the lack of tools and organization for streamlining systems of care. To streamline systems of care means to organize the information provided by the care-team, to make it easier for physicians, caregivers, and patients to communicate and receive care effectively and efficiently. We decided to explore this gap with our Volunteers because it is a profoundly complex issue. While some small advancements regarding communication have been made over the past few decades, medicine’s methods of communication have remained largely unchanged. Streamlining systems of care is important because it alleviates potential sources of stress for the care-team and patient, while also helping healthcare workers provide the most effective care.
Although there were many topics that came up during our conversation, there were a few topics that resonated with everyone. At the point of diagnosis, many Volunteers described an “imbalance” when receiving information. Larger cancer care systems were described as giving too much information on the diagnosis, and not enough (or no) information on support systems. Since they have more clientele, larger hospitals may not always have the resources to focus on person-centered care. While “hand-holding” may not be efficient, neglecting information on supportive care needs can lead to a variety of issues down the road.
Another issue that was recognized amongst participants was the organization of information. Due to the extensive number of different appointments patients have, information between one and the next becomes jumbled. To manage this issue, patients typically bring a caregiver to take notes and help keep materials and information organized. One Livestrong Leader mentioned that access to different physicians’ notes would make communication more effective, but also stated that this is rarely a standard procedure. HIPAA was also described as being a hindrance in organization and communication amongst caregivers and the physician team. Due to HIPAA compliance regulations, physicians on the same care team for a single patient often have difficulty communicating to each other and to caretakers. Some of the Volunteers described receiving conflicting information on how to address their disease. While hearing different opinions is appreciated amongst patients and caregivers, it can be confusing and difficult to get healthcare providers on the same page.
For some of the issues that came up, the solutions were as simple as incorporating lesser-used practices into mainstream care systems. With regards to not receiving the right information at the right time, Volunteers agreed that members of the care team need to come up with a solution to balance the information they are giving. If hospitals could provide more information on support groups and person-care right off the bat, as opposed to piling on information about treatment, it could make the information less daunting. Focusing on practical support resources and social-emotional support can be beneficial to everyone affected by the individual’s cancer diagnosis.
When discussing potential solutions to optimize patient-physician interactions, one potential solution could be the incorporation of medical, HIPAA compliant scribes to help alleviate the stress of notetaking. Although our Volunteers expressed that they would still take notes for peace of mind, they agreed that having a scribe summarize the doctor’s guidance could improve the clarity of information. In addition to using medical scribes, having physicians print their notes for patients could also allow for consistency between patient and physician notes and help patients and caregivers keep track of information.
To address the issues of HIPAA, note-taking, accessibility, and communication, one of the solutions that we discussed was the possibility of creating a central access point for everyone on the care team, regardless of where care is being delivered. One of the Livestrong Champions that lives in the Netherlands shared about a centralized system available nationally that allows their care team to share care notes amongst each other, regardless of their location. If something like this could be standardized in the United States, allowing patients to opt in or out, then care communications could be streamlined. If communication and practice become streamlined, then treatment could ultimately become more efficient.
Post treatment care
Another crucial gap in cancer care we discussed was post-treatment care. According to the American Cancer Society, 1.8 million people in the US will receive a new cancer diagnosis in 2020. However, there are 16.9 million Americans currently living with a history of cancer. Treatment is a looming mountain full of unpleasant and scary “firsts”. But what happens after treatment is often neglected by the public imagination. So, what happens after the chemotherapy, the constant scans and tests, and the regular visits with your treatment team are over?
After a person undergoes cancer treatment, their experience will often still affect them emotionally, physically, and practically. Patients and their caregivers still need attention after treatment to ensure their quality of life is optimal in this “new normal”. Improvements in the availability and effectiveness of post-treatment care are important to help people achieve fulfilling and comfortable lives. We wanted to hear from our Volunteers about their experiences, and how life after cancer could be improved for people in their communities.
“It’s not a battle, it’s a war,” said one Livestrong Leader. Receiving notice of remission doesn’t mean that your journey with cancer is over — there are many more battles to be fought. Some described their emotional struggles after cancer to be like post-traumatic stress disorder, where certain triggers can bring up memories of unpleasant treatment experiences. Others recalled a gnawing fear of recurrence. What if it comes back, or when will it come back?
Moreover, many patients aren’t given enough information about their long-term physical health trajectory after cancer treatment. Some ailments, such as chemo brain, joint pain, and hormonal imbalances don’t resolve easily, and can cause long-term distress. Even after the initial life-threatening illness is resolved, the body and mind still need care to help people live comfortable lives. Cancer is an event that can move a person from their previous equilibrium to a new and different state. The essence of post-treatment care is to help former patients adapt to this new normal and still live an optimal life.
After shedding light on what post-treatment life looks like, our Volunteers had some thoughts about how the systems surrounding them could be improved. The overwhelming majority called for more supportive services for long-term cancer care, as many had found that the support provided at the point of diagnosis disappeared once their treatment concluded. Prospective services could include social-emotional support groups for chronic cancer survivors who may have been disconnected from the cancer community over time. These support groups would allow post-treatment cancer survivors to guide others coming off treatment. Survivors would be given spaces to talk about the emotional and physical challenges after acute care. Many patients feel like they must find supportive circles like these entirely on their own, which calls for large organizations like Livestrong to connect patients to these groups.
The Volunteers also discussed the need for more organized long-term care after initial treatment. They asked for a long-term care plan with consistent follow-up appointments and broad surveys asking about their health. This way, patients in remission, as well as those living with chronic or metastatic cancers, would be given more opportunities to clearly communicate their needs with healthcare professionals. Cancer does not stop affecting the whole person after remission, so the healthcare system should not stop working to heal it.
These discussions with our community Volunteers were vulnerable and eye-opening. They shed light on the difficult gaps that remain for the many people affected by cancer. There are many things that still need to be addressed within the healthcare system as well as outside of it. These medical and practical spheres shape a patient’s life from the point of diagnosis to far after the conclusion of treatment. At Livestrong, we are here to listen to the voices of people impacted by cancer, so we can better improve the life of the next patient. There are so many things that we can continue to work on. That is why we ask ourselves, what everyday cancer problem can we fix today?
Jenny & Amber were Summer, 2020 Mission Interns at the Livestrong Foundation. Jenny is a senior at John Hopkins University and Amber is a junior at UT Austin.