Stanford Cancer Institute




Navigating Cancer Care With the Stanford Care Coach Program
Cancer Care Team

Left to Right:   Khay Asuncion, Brian Rogers, Kavitha Ramchandran, Nina Alves

Navigating a cancer diagnosis is undeniably a challenging and overwhelming journey. In the whirlwind of medical appointments, treatments, logistical hurdles, and medical decisions, patients frequently find themselves grappling with the physical toll of their disease, compounded by the emotional weight of uncertainty and loss of personal autonomy. Advanced care planning empowers patients by aligning medical care with their unique goals and values, which can provide a sense of control amidst all the uncertainty.

 

The evolution of the Stanford Cancer Care Program

To help facilitate advanced care planning, Stanford Cancer Care Services implemented the Care Coach Program in 2019 based on data-driven research. Stanford Cancer Institute (SCI) member Michael Gensheimer, MD, and team found that integrating a machine learning survival model to identify eligible patients, alongside engaging non-clinical lay healthcare coaches, increased advanced care planning and prognosis documentation among patients with metastatic cancer. Additionally, SCI member Manali Patel, MD, and others found that incorporating lay health workers into cancer care increased patient satisfaction with both their care and decision-making processes.

The Care Coach Program began as a pilot in the Stanford urology clinic and focused on patients with a prognosis of fewer than two years. It now includes most cancer disease areas and patients at high risk of readmissions or who could benefit from advanced care planning conversations.

 

Empowering patients

The Stanford Care Coach Program comprises a team of dedicated lay health coaches committed to empowering patients to find their voice and advocate for their needs. Patients often feel more comfortable expressing their concerns and thoughts to non-medical professionals. The coaches help to amplify the importance of considering all aspects of a patient's life in medical decision-making and facilitate open discussions in nonclinical settings. After each patient encounter, care coaches keep the patient's clinical team abreast of their discussions to help align clinical care with the patient’s wishes. 

SCI member Kavitha Ramchandran, MD, medical director, Cancer Care Services, articulates that care coaching fosters genuine connections with patients by leveraging their own life experiences. “Experience is a way to bring people in and create confidence and courage for patients to feel like they can share things very openly," she asserts.

Ramchandran underscores the pivotal role care coaches play in patient advocacy by ensuring that patients' voices resonate beyond the confines of medical jargon and clinical assessments.

As care coach Brian Rogers explains, "In a nonclinical setting, folks can speak openly, bounce ideas off somebody, and we can document those things to make their teams aware of non-medical factors driving medical decision-making."

Cancer Care Services program manager Khay Asuncion emphasizes the core of effective cancer care lies in the crucial foundation of trust and connection with patients and their families—it's about fostering a space where they feel safe to share their fears and vulnerabilities. 

Nina Alves brings her experience of her mother's journey of surviving stage 4 cancer into her work as a care coach. Alves highlights a common sentiment among patients–feeling like soldiers for their doctors. Patients often feel compelled to adhere strictly to their doctor's plan, fearing disappointment or failure if they deviate. Alves emphasizes that diverging from the initial treatment plan is not a failure but a natural progression, and patients should feel confident to make decisions that align with their well-being and values. She reassures patients that they are in control of their journey, empowering them to voice their needs and priorities. 

“We're here to help tease things apart. Are we just having a rough day, or are we done with treatment? Because if it's the latter, it's okay, and you're not letting anyone down, including your family members.”

Rogers recalls a patient who expressed her willingness to undergo all necessary treatments, stating, "I'm game for everything - Do your radiation, your chemo, all good. But in six months, my daughter's getting married, and I want to feel as good as I can for the wedding.” Rogers empowered the patient to articulate her priorities to her oncologist. Collaboratively, the patient and her doctor analyzed her treatment schedule and determined that she felt her best two weeks after each treatment. With this information in hand, they reverse-engineered her schedule six months in advance of her daughter’s wedding to ensure the two weeks post-treatment coincided with the wedding date. This proactive approach ensured that she could fully enjoy her daughter's special day while managing her cancer treatment.

Rogers notes, “It worked out great! She called me afterward and sent pictures. It's really about giving patients the opportunity to feel that they can speak up and tell us what is important in their lives. Let's let life happen, and we'll work around it.”

 

Advanced care planning

Stanford care coaches are certified advanced care planning facilitators. Advanced care plans ensure that healthcare providers and loved ones know and respect patients' care preferences. The team utilizes the Serious Illness Conversation Guide to navigate advance care planning discussions. The guide delves into crucial questions about the patient's current understanding of their cancer and what truly matters to them in the face of potentially worsening disease. Questions like, "If your illness were to get worse, how much would you be willing to go through for the possibility of more time?” are used to guide patients to reflect on their care treatment decisions.

Ramchandran emphasizes the importance of approaching these conversations incrementally to avoid overwhelming patients and families. She recommends having "living conversations" over time to better understand patients' fears, worries, hopes, and goals. Only then can the healthcare team effectively translate patients' desires into medical decisions. This perspective underlines how advanced directives are more than checkboxes on a legal form. An advanced care plan reflects the personal narrative of patients as they navigate their cancer journey.

Approaching discussions about end-of-life care preferences requires a delicate blend of empathy and intuition. Although the Serious Illness Conversation Guide steers the coaches, they remain attuned to the unique emotional landscape of each patient. Rogers explains it's about meeting them where they are, acknowledging their discomfort, and gently nudging the conversation forward when necessary. Sometimes, Rogers recognizes the situation for what it is and says, “I know this sucks. Because let's face it, nobody wants to be in this position.”

Alves begins by gauging the patient's understanding of their illness status. She explains, “It is a multi-step process.” Over the course of several conversations, she delves into potential future health scenarios, exploring worries and priorities such as pain management, family care, and financial concerns. Additionally, she discusses critical abilities the patient values, like communication and self-care, and explores their willingness to undergo interventions like ventilation, feeding tubes, or CPR. Finally, the advanced directive addresses who would make decisions on the patient's behalf if they became unable to do so themselves. 

Ramchandran highlights a shift from the program’s previous practice of solely addressing advanced directives during moments of crisis. “We used to be the bad news docs,” recalls Ramchandran. Initially, they discussed advanced directives only when situations were dire. However, the Cancer Care team now integrates these conversations into routine care by engaging with patients across their cancer journey. This shift has transformed the nature of discussions led by care coaches by making them less intimidating and fostering ongoing support through regular communication.

Advanced care discussions can be a challenge for both patients and physicians. Oncologists are trained to cure patients, so it can be especially daunting for them to deliver difficult news. The Serious Illness Care Program, led by Winnie Teuteberg, MD, has trained hundreds of clinicians since 2018 to feel more comfortable in having these challenging conversations. Using the Serious Illness Conversation Guide, clinicians learn to navigate these conversations with honesty and compassion. Through the collaborative efforts of care coaches and trained clinicians, patients are better equipped to make informed treatment decisions, prioritize their quality of life, and emotionally prepare for what lies ahead.

As Alves aptly puts it, "There's been times when we talk to a patient that looks and feels and sounds like us. And I think that's where the real space of empathy comes in, where we can really put ourselves in their shoes and really understand kind of where they're coming from. The decisions that they're having to make, and how hard this all must be, allows us to be more compassionate providers to these patients."

Rogers states, “I'm blessed to be able to do this work. It definitely is not easy sometimes. But as I tell my kids—a life lived in service to others is a life well lived. But there are definitely days when things hang with you, and they stick with you in funny ways. Some people have passed on, but they left an impression on me, and I hope I left at least some small impression on them, and that's all I can really hope for.”

March 2024
By Sarah Pelta