Navigating a cancer diagnosis presents an immense and overwhelming journey. Amidst a whirlwind of medical appointments, treatments, logistical challenges, and critical health decisions, patients often grapple with the physical burdens of their illness, intensified by the emotional weight of uncertainty and a perceived loss of control. The Stanford Care Program steps in to empower these individuals by aligning their medical care with their deeply held personal goals and values. This patient-centered approach offers a crucial sense of control amidst the inherent uncertainties of cancer.
The Evolution of the Stanford Care Program: A Patient-First Approach
Recognizing the critical need for advanced care planning, Stanford Cancer Care Services pioneered the Care Coach Program in 2019. This innovative program is rooted in data-driven research and designed to enhance the patient experience. Groundbreaking research led by Stanford Cancer Institute (SCI) member Dr. Michael Gensheimer and his team demonstrated that integrating a machine learning survival model to identify patients who would benefit most, coupled with the support of non-clinical lay healthcare coaches, significantly improved advanced care planning and the documentation of patient prognosis for those with metastatic cancer. Further studies, including those by SCI member Dr. Manali Patel and colleagues, have reinforced these findings, highlighting that incorporating lay health workers into cancer care dramatically increases patient satisfaction with both their overall care and their decision-making processes.
Initially launched as a pilot program within the Stanford urology clinic, the Care Coach Program focused on patients with a prognosis of fewer than two years. Its success and impact have led to its expansion to encompass the majority of cancer disease areas. Today, the Stanford Care Program supports a broader range of patients, including those at high risk of hospital readmission or anyone who could benefit from proactive and thoughtful advanced care planning conversations.
Empowering Voices: The Role of Stanford Care Coaches
At the heart of the Stanford Care Program is a dedicated team of lay health coaches. These individuals are deeply committed to empowering patients to articulate their needs, find their voice, and actively participate in advocating for their own care. Patients often find it easier and more comfortable to share their concerns and thoughts with someone outside of the clinical medical team. Stanford Care Coaches bridge this gap, emphasizing the importance of considering every facet of a patient’s life when making medical decisions. They skillfully facilitate open and honest discussions in comfortable, non-clinical settings. Crucially, after each interaction, care coaches ensure the patient’s clinical team is fully informed of these discussions, fostering a cohesive and aligned approach to care that truly reflects the patient’s wishes.
Dr. Kavitha Ramchandran, MD, medical director of Cancer Care Services and a SCI member, emphasizes the unique ability of care coaches to forge genuine connections with patients by drawing upon their own diverse life experiences. “Experience is a powerful tool to connect with people, build trust, and give patients the confidence and courage to share openly,” she explains.
Dr. Ramchandran further highlights the pivotal role of Stanford Care Coaches in patient advocacy. They ensure that patient perspectives are not lost within complex medical terminology and clinical evaluations, making sure the human voice remains central to the care process.
Brian Rogers, a Stanford Care Coach, eloquently describes their approach: “In a non-clinical environment, individuals feel more at ease to speak candidly, explore their thoughts with someone, and we meticulously document these insights to inform their medical teams about the non-medical factors that significantly influence their healthcare decisions.”
Khay Asuncion, program manager for Cancer Care Services, underscores that the foundation of effective cancer care is built upon trust and genuine connection with patients and their families. The Stanford Care Program prioritizes creating a safe and supportive space where patients feel secure in sharing their fears and vulnerabilities without judgment.
Nina Alves, a Stanford Care Coach, brings her own deeply personal experience of her mother’s journey as a stage 4 cancer survivor to her work. Alves highlights a common sentiment among patients: feeling like they must be unwavering “soldiers” for their doctors. Patients often feel pressured to strictly adhere to the initial treatment plan, fearing they will disappoint their medical team or be seen as failing if they consider a different path. Alves passionately emphasizes that altering the initial treatment plan is not a sign of failure but a natural evolution of their journey. Patients should feel empowered and confident to make choices that are in harmony with their own well-being and personal values. She reassures patients that they are always in control of their journey, encouraging them to voice their needs and priorities without hesitation.
Alves poignantly states, “We are here to help patients unpack everything. Are they simply having a difficult day, or are they genuinely ready to be finished with treatment? If it’s the latter, that is absolutely okay, and they are not letting anyone down, including their loved ones.”
Rogers shares a powerful anecdote about a patient who initially expressed willingness to undergo all recommended treatments, saying, “I’m committed to everything – radiation, chemo, whatever is needed. However, in six months, my daughter is getting married, and my priority is to feel as well as possible for her wedding.” Rogers empowered this patient to clearly communicate her priorities to her oncologist. Working collaboratively, the patient and her doctor carefully analyzed her treatment schedule and discovered that she consistently felt her best approximately two weeks after each treatment session. With this crucial information, they proactively adjusted her treatment schedule, ensuring that the two-week post-treatment window perfectly coincided with her daughter’s wedding date six months in the future. This proactive and patient-centered approach ensured she could fully and joyfully participate in her daughter’s special day while effectively managing her cancer treatment.
Rogers reflects, “It was a resounding success! She called me afterward, overjoyed, and sent pictures from the wedding. It truly illustrates the essence of the Stanford Care Program – giving patients the opportunity to speak up, express what is truly important in their lives, and allowing life to happen while we collaboratively adapt their care.”
Advanced Care Planning: Charting a Course Aligned with Patient Values
Stanford Care Coaches are not only compassionate listeners but also certified advanced care planning facilitators. They are experts in guiding patients through the crucial process of advanced care planning. These plans are essential in ensuring that healthcare providers and loved ones are fully aware of and deeply respect a patient’s preferences for their care. The Stanford Care Program team utilizes the widely respected Serious Illness Conversation Guide to facilitate these sensitive and vital discussions. This guide helps delve into critical questions, such as the patient’s current understanding of their cancer and what truly matters most to them as they face the possibility of their illness progressing. Thought-provoking questions, like, “If your illness were to worsen, what extent of medical intervention would you be willing to undergo for the possibility of gaining more time?” are carefully used to encourage patients to thoughtfully reflect on their treatment decisions in light of their personal values.
Dr. Ramchandran stresses the importance of approaching these profound conversations gradually and incrementally, recognizing the potential for emotional overwhelm for both patients and their families. She advocates for “living conversations” that unfold over time, allowing for a deeper understanding of patients’ evolving fears, anxieties, hopes, and goals. Only through this ongoing dialogue can the healthcare team effectively translate a patient’s deeply held desires into tangible medical decisions. This perspective underscores that advanced directives are far more than simply checkboxes on a legal form. A well-considered advanced care plan becomes a reflection of the patient’s unique personal narrative as they navigate their cancer journey.
Approaching discussions about end-of-life care preferences demands a delicate balance of profound empathy and keen intuition. While the Serious Illness Conversation Guide provides a structured framework for Stanford Care Coaches, they remain acutely attuned to the unique emotional landscape of each patient. Rogers explains that their approach is centered on “meeting patients exactly where they are,” acknowledging their potential discomfort, and gently guiding the conversation forward with sensitivity and respect when appropriate. Sometimes, simply acknowledging the difficulty of the situation is the most supportive approach. Rogers shares, “Sometimes, I just say, ‘I know this is incredibly difficult.’ Because, honestly, nobody wants to be in this situation.”
Alves initiates these important conversations by carefully gauging the patient’s current understanding of their illness status. She describes it as “a multi-step process.” Over several conversations, she delicately explores potential future health scenarios, addressing key worries and priorities such as effective pain management, family care considerations, and financial concerns. Furthermore, she discusses abilities that the patient values most highly, such as maintaining communication and self-care independence, and explores their willingness to consider interventions like ventilation, feeding tubes, or CPR. Finally, the advanced directive clearly designates who the patient would want to make healthcare decisions on their behalf should they become unable to do so themselves.
Dr. Ramchandran highlights a significant and positive shift in the Stanford Care Program’s approach. Previously, discussions about advanced directives were often confined to moments of crisis. “We used to be the ‘bad news docs’,” Dr. Ramchandran recalls. Initially, these sensitive conversations were primarily initiated when situations became critical. However, the Cancer Care team has now proactively integrated these vital conversations into routine care, engaging with patients throughout their entire cancer journey. This fundamental shift has transformed the nature of discussions led by care coaches, making them less daunting and fostering a continuous support system through regular communication.
Discussions surrounding advanced care planning can be challenging for both patients and physicians. Oncologists are primarily trained to focus on curing patients, which can make delivering difficult news and discussing end-of-life wishes particularly emotionally taxing. To address this, the Serious Illness Care Program, expertly led by Dr. Winnie Teuteberg, MD, has provided specialized training to hundreds of clinicians since 2018. This training equips them with the skills and confidence to navigate these crucial conversations with both honesty and deep compassion, utilizing the Serious Illness Conversation Guide. Through the collaborative efforts of Stanford Care Coaches and these specially trained clinicians, patients are significantly better supported to make informed treatment decisions, prioritize their overall quality of life, and emotionally prepare for the path ahead.
As Alves beautifully summarizes, “There are times when we connect with a patient who is just like us in so many ways. And I believe that is where true empathy arises. We can genuinely step into their shoes and truly understand where they are coming from. Recognizing the weight of the decisions they face and how incredibly challenging this entire experience must be allows us to be more compassionate and truly patient-centered providers.”
Rogers concludes with heartfelt reflection, “I feel incredibly fortunate to do this work. It is undoubtedly not always easy. But as I often tell my children—a life dedicated to serving others is a life truly well lived. There are certainly days when the weight of these experiences stays with you, impacting you in unexpected ways. Some patients have passed on, but they have left a lasting impression on me, and I sincerely hope I have left at least some small positive impression on them. Ultimately, that is all I can truly hope for.”
