Facing Cancer as a Chronic Disease: Shared Decision-Making at Critical Points in a Long Illness Journey

J Clin Pathways. 2024;10(5):20-26. doi:10.25270/jcp.2024.09.01

In 1975, the overall five-year survival rate for cancer was 49%. In 2023, 69% of peo­ple with a cancer diagnosis had a five-year survival rate. There are currently 16.3 million people in the United States who have lived for five years or longer after receiving a cancer diagnosis, and these statistics continue to improve (Figures 1 and 2). This progress stems in large part from remarkable advances in treatment and care, which have turned many cancers with prognoses of months or even weeks into liv­able chronic conditions in which people can live for years. Some of these individuals are cured by their initial treatment, whereas others continue to have active disease or go through a series of remissions and recurrences that require ongoing treatment.

The growing population of individuals living with cancer face significantly different challenges to making informed, shared decisions about their treatment compared with those who are newly diagnosed or have a short course of disease. The shared decision-making process for newly diagnosed patients focuses on acquiring basic knowledge about their specific cancer, treatment options, and prognosis while grappling with their entry into what Susan Sontag described as the “kingdom of the sick.”³

A newly diagnosed patient is likely to feel overwhelmed with fear and uncertain­ty. They often have difficulty understanding what their doctors tell them or do not know what questions to ask. Most of these patients lack knowledge of their disease and its treatment options. They may not understand the complex terms and concepts intrinsic to cancer treatment. They may also struggle to find resources and support. Their concerns about treatment are often equaled or overshadowed by their fears about the impact of the disease on their life, family, job, and financial well-being.

As patients learn to live with their disease, they become in­creasingly knowledgeable and informed participants in their care. They develop skills in communicating with health care teams, finding information and support, balancing treatment options with life issues, and navigating the complex and often frustrating health care system. While the term “shared de­cision-making” may not be commonly used, the concept becomes an ongoing reality for these patients and their caregiv­ers. In many instances, they also translate their self-advocacy skills into advocating for others facing similar experiences or to drive systemic change.⁴

During 2023, we conducted a series of three workshops with community partners to explore issues related to shared deci­sion-making for people living with cancer and other chronic diseases (Box 1). We traveled to three diverse locations: Ru­leville, Mississippi; Richmond, Virginia; and Los Angeles, California. Our goals were as follows:

• Learn what shared decision-making means to people living with cancer over a long period of time. This applies to patients who live with cancer or other chronic diseases for months or years without being cured. Most patients continue to receive treatment and face ongoing decisions about their life, care, and treatment.
• Learn what topics are difficult for patients and caregivers to discuss with their health care providers and how both groups approach these issues.
• Listen to the ways in which patients and caregivers tell their stories, the issues they raise, and the language they use.
• Learn what strategies and approaches patients and providers develop for responding to key decisions over a long illness journey.
• Learn what systemic issues pose barriers to access to optimal care and shared decision-making.

Our partners included individuals and groups with strong roots in their communities who were willing and capable of co-creating the workshops and with whom we had long-standing collaborative relationships. Our partners helped us recruit par­ticipants, choose an appropriate venue, and develop and imple­ment an agenda that fit each location and community. We also provided compensation to both partners and workshop par­ticipants for their time, effort, and insight. Each program was built on our commitment to learn from communities, listen to patient and caregiver voices, and bring patients, caregivers, and health care providers together to discuss key issues.

The workshops were designed to be patient-forward, high­ly interactive, and to include representative health care pro­viders from the region. Each program included the following components:

• A keynote presentation from a local health care professional explaining the concept of shared decision-making and its importance in clinical practice for both patients and providers
• Small group sessions in which participants discussed specific questions about their communications with their providers and the ways in which they did or did not have the opportunity to make shared decisions about their treatment and care
• Full group discussions of the conclusions and recommendations from the small groups
• A narrative medicine session focused on helping participants tell their stories and communicate more effectively
• Mini “story slams” to give participants the opportunity to tell their stories
• A finale to discuss next steps and follow-up
• A comprehensive evaluation that assessed patient and caregiver attitudes, practices, and beliefs related to shared decision-making as well as the value of the workshop

Participants primarily reflected minority and underserved communities. In Virginia and California, the groups comprised patients with cancer and caregivers. In Mississippi, we included some patients with other chronic diseases, such as diabetes, hy­pertension, and heart disease, due to transportation and logisti­cal issues (Figures 3 and 4). All of the participants and caregivers that our partners recruited attended the workshops, participated actively, and stayed for the entire duration of the program.

Relationships Matter

Unsurprisingly, workshop participants identified having a good, trusting relationship with their providers as the most essential factor impacting their ability to make shared decisions. Participants discussed the importance of consistency in hav­ing providers who knew them well and their medical history. They wanted providers who listened to them and had some understanding of their goals and life situations. They placed high value on mutual trust and open communication. Whereas patients and caregivers depended primarily on their doctors for these relationships, they also recognized the great value that nurses, nurse practitioners, and other health care team mem­bers bring to the shared decision-making process.

As noted in Figure 5, a high percentage of participants in all three locations reported that they have positive relationships with their providers. This was true despite significant barriers to access in two of the locations (California and Mississippi). The high number of positive responses reflects the improved ability and persistence of patients facing long-term illness to find providers whom they can trust and communicate with ef­fectively. It also shows that these patients and caregivers have learned to navigate the system successfully during the course of their illness and are willing to share their experiences. These results may also be due to the participants having been recruited for the workshops based on their advocacy for themselves and their communities.

Information and How it's Made Available is Vital

Participants in all three workshops expressed a strong de­sire to learn about their conditions and available treatment options. A common theme was that participants wanted in­formation upfront and early so that they could understand their illness and become partners in the decision-making pro­cess. This is particularly critical for patients living with types of cancer that are in partial or complete remission and require ongoing treatment. Treatment options for those conditions often depend heavily on the exact cancer type, stage, and specific biomarkers present in the tumor. These are complex factors that make it more difficult for patients to find and un­derstand the information they need.

It is also common for treatments to work for a period of time and then require changing or stopping treatment if the cancer begins to grow again. This process triggers a series of increasingly difficult decisions. Second-, third-, and fourth-generation treatments characteristically have lower response rates and shorter periods of disease control. This means that patients and their providers must make decisions with high levels of uncertainty while balancing potential clinical benefits with negative effects of treatment on their lives. Participants discussed choosing approaches that increased quality of life. Others discussed the difficulty of choosing to end treatment, particularly with regard to having their family and friends ac­cept their decisions.

This complexity and fluidity in decision-making increases the importance of providing patients with timely, usable in­formation about their individual type of cancer at each criti­cal decision point. It is not only patients, however, who need information. To achieve true shared decision-making, pro­viders must understand what is important to their patients at each juncture in the illness journey. Providers should ask their patients about their goals and critical issues in their lives and acknowledge that these will evolve with time and experience.

Patients Do Use Technology

The participants demonstrated a strong awareness of the value of using their patient portals, seeking information online (“Dr Google”), and the ability to use technology to get the informa­tion they need. For many, the primary tool for that purpose is the smartphone. In rural areas, such as the Mississippi Delta, WiFi coverage is often weak or nonexistent. However, as noted in Figure 6, a high percentage of patients in that area use the electronic medical record (EMR) or patient portal. This chal­lenges the widely held misconception that many minority and rural populations cannot or will not access information using available technology. Instead, the technology needs to be made available in formats and on platforms that these patients can ac­cess readily. When we provided our evaluation forms both on paper and with a QR code, the vast majority of respondents used the QR code.

Some Topics Are More Difficult to Discuss

In our small group sessions, we asked participants to discuss specific questions about how they communicate with their pro­viders and make decisions about their care. Participants iden­tified several topics and issues that they found challenging to discuss with their doctors. As noted earlier, participants in all three workshops identified that discussions involving major changes in treatment or the decision to end treatment were the most difficult ones to initiate and have.

Some participants reported fear of judgment from their providers, stemming from concerns about being blamed for their disease, their physical appearance or condition, not “suc­ceeding” in their treatment, or, in some instances, their sexu­ality. Some participants reported feeling reluctant to discuss concerns about the costs of their care, believing that if they expressed an inability to pay for a treatment, it could lead to suboptimal care. Participants stated a strong desire to be in­formed of all of their options and permitted to make their own decisions about whether they could or could not afford that care. One participant, for example, explained how after receiv­ing a breast cancer diagnosis, she did her research and discov­ered the value of a test to assess the need for chemotherapy. When she asked her doctor about that option, he responded that he had not mentioned it because he didn’t think she could afford it. This participant felt that her doctor withheld impor­tant information based on a judgment about her race and socio­economic status.

In this and other work we have done on the costs of care discussions, it is also important to note that patients consis­tently report the belief that their insurance status influences the quality of their care. Individuals without insurance often have problems getting appointments with doctors. People with Medicaid and those who are underinsured encounter barriers to seeing specialists and accessing more expensive therapies and perceive a qualitative difference in provider attitudes and com­munication styles.

People Want to Tell Their Stories and Hear Others

In each of our workshops, we included “narrative medicine” sessions focused on helping people understand how to tell their stories more effectively. We also offered participants the op­portunity to tell their stories as mini “story slams.” For these groups of patients and caregivers, the opportunity to be heard was critical. People who are dealing with a serious disease over a long period of time view sharing their experiences as an im­portant component of managing their conditions—both men­tally and physically—and place real value on the sense of com­munity they derive from connecting with each other.

Self-Advocacy Leads to Advocating for Others

Our partners recruited participants based on their interest in addressing issues related to shared decision-making and self-advocacy. However, within these groups, we discovered a very strong interest in “paying it forward.” Participants who have learned how to make shared decisions and navigate the health care system spoke passionately about wanting to help others facing similar situations. They were particularly interested in helping others understand how to communicate effectively with their medical teams and navigate the health care system. For example, patients who have been living with their disease are aware of the time constraints that impact patient- physician interactions and have developed strategies for using the avail­able time well, such as getting information before the appoint­ment, writing down and prioritizing questions, and ensuring their most important questions are answered before leaving an appointment. The willingness of this group to share their knowledge and experience makes them a potentially valuable resource as peer counselors to help bridge gaps and assist more newly diagnosed patients with shared decision-making.

Access is a Key Barrier to Shared Decision-Making

“The future of cancer treatment is here, but its benefits are not evenly distributed or available to all patients,” said Robert Winn, MD, in his keynote address for the National Patient Ad­vocate Foundation’s 2023 Fall Policy Consortium. The prog­ress in diagnosing, treating, and caring for cancer lags behind for Black and Hispanic or Latino people and those who live in low-income and underserved areas. Optimal treatment may not be available at local treatment facilities, or the treatments and care may be too expensive for many people to afford.^5,6

Our workshops presented significant evidence that the greatest barrier to shared decision-making is lack of equitable access to optimal care. In Mississippi—one of ten states that has failed to expand Medicaid—participants talked about the scarcity of primary care doctors in their region. They described the impact of closing hospitals and specialists and leaving the Delta area because they could no longer afford to practice there. Patients with serious illnesses have to seek care in facilities hundreds of miles from their home or not receive it at all. Many uninsured patients are unable to get appointments to see any doctor.

South Central Los Angeles is a very different place, but par­ticipants from there also talked about barriers to finding the op­timal cancer care and treatment. Despite the presence of mul­tiple high-level treatment centers in the region, many patients find it difficult to identify and access that care, especially if they are on Medi-Cal or are underinsured. They also describe hav­ing to travel long distances in the Los Angeles area to get the care they need.

The Richmond, VA, workshop, co-sponsored by the Massey Comprehensive Cancer Center at Virginia Common­wealth University, primarily served patients at that center. Par­ticipants described their experiences differently, as they ben­efit from the quality and team approach that is the hallmark of comprehensive cancer centers. These participants uniformly reported interacting with providers who listen and help them make informed decisions and receiving support from both staff and other patients.

For patients and caregivers facing cancer or other chronic diseas­es over a long period of time, shared decision-making is an on­going critical component of their care and treatment plan. The need to make decisions occurs at multiple points in a patient’s life and often involves balancing potential clinical benefits with quality-of-life issues. As patients progress in their illness jour­ney, they become accomplished citizens in the “kingdom of the sick,” more knowledgeable about their conditions, and skilled in navigating the health care system. As a result, they are better able to become true partners in the decision-making process. There is a need to recognize the specific needs for this grow­ing and evolving population and to develop more tools and resources for patients to use at critical decision-making junc­tures. It is also important to recognize that lack of equal access to treatment advances and comprehensive care pose significant obstacles to people in diverse geographic locations, both rural and urban, and is a primary reason why even the most informed and motivated patients may not be able to engage fully in shared decision-making or receive optimal care and treatment.

Affiliations:

Patient Advocate Foundation, Narberth, PA

Correspondence:

Christine Wilson, MA, MS

VP Communications

Patient Advocate Foundation

102 Foxhall Lane

Hampton, VA 23666

Email: christine.wilson760@gmail.com

Acknowledgements:

Our thanks to the Danaher Foundation for this project.

Disclosures:

The authors report no financial disclosures.