Building a Framework for Truly Patient-Centered Cancer Care

By aligning treatment with patients' values and goals, Fox Chase Cancer Center clinicians are infusing Goal Concordant Care into routine practice, partnering with their patients to honor what matters most when facing serious illness.

By Greg Lester

For patients with advanced cancer, medical decisions are rarely simple. Treatments have grown increasingly sophisticated, offering the potential for longer survival but also creating difficult choices about side effects, quality of life, and personal priorities. Too often, research shows, the course of treatment does not fully reflect what patients say matters most to them.

This gap is what drives the work of Marcin Chwistek, MD, FAAHPM, Director of Fox Chase Cancer Center's Supportive Oncology and Palliative Care Program. For the past four years, he has been helping to lead a multi-institutional effort to design a comprehensive framework for Goal Concordant Care-an approach that ensures treatment aligns with patients' values and preferences throughout their care journey.

"Cancer treatment has transformed how we think about advanced illness," said Chwistek. "As patients live longer with complex disease, respecting their values and quality-of-life goals becomes even more critical."

Marcin Chwistek, MD, FAAHPM, participated in the prestigious Safety, Quality, Informatics, and Leadership (SQIL) program at Harvard Medical School, where his work in Goal Concordant Care earned top recognition.

The Challenge of Alignment in Modern Cancer Care

Chwistek's involvement in Goal Concordant Care began four years ago through a multi-institutional project with the Alliance of Dedicated Cancer Centers (ADCC). The initiative emerged from research indicating that patients' expectations often did not align with their clinical experience.

Goal Concordant Care addresses a seemingly simple premise: patients and providers working together to align treatment options with patients' values and preferences. However, implementation proves complex in today's healthcare environment, where cultural attitudes and the intricate nature of modern medicine create barriers to meaningful alignment.

"Clinical research reveals a concerning gap: most patients with advanced cancer do not consistently receive care that fully aligns with their values, wishes, and preferences, despite widespread recognition of the approach's importance," Chwistek explained.

Marcin Chwistek, MD, FAAHPM, Director of Fox Chase Cancer Center's Supportive Oncology and Palliative Care Program, together with clinical partners across Fox Chase and other institutions, is leading efforts to integrate Goal Concordant Care into routine clinical practice.

Building a Framework for Change

"There was a valid concern that sometimes these conversations simply happen too late in the course of treatment," Chwistek said. "We realized we need to fundamentally change when and how these conversations happen."

Working with colleagues across all ten ADCC member institutions, Chwistek has helped develop a comprehensive framework that provides a structured approach to understanding and honoring patient priorities throughout treatment. The collaboration has resulted in commentary and position papers published in The Oncologist and the Journal of Pain and Symptom Management.

Elaine Spangler and Ray Cormier, in their volunteer work with Fox Chase's Patient and Family Advisory Council, champion the concept of Goal Concordant Care to align cancer treatment with patients' values and preferences.

Integrating Goal Concordant Care into Routine Clinical Practice

Currently, Chwistek is working with senior leadership, colleagues across departments, and patient representatives on a pilot program at Fox Chase that is making significant progress in developing workflows to integrate Goal Concordant Care into routine practice. The framework begins with training physicians to manage serious illness conversations with patients and caregivers.

"Managing difficult conversations is more of a skill than a talent, and it is vitally important in medical oncology," Chwistek said. A couple of years ago, Fox Chase partnered with VitalTalk - a national organization that provides training for clinicians to advance their communication skills - to engage faculty members across various departments with virtual training tailored to oncology-specific communication challenges.

The next critical step involved adapting health records to reflect these conversations accurately. Fox Chase's transition to Epic has facilitated specific data entry fields for patient preferences, but challenges persist in capturing nuanced discussions.

"Goal Concordant Care is primarily about having meaningful conversations with patients," Chwistek emphasized. "The challenge then becomes capturing those conversations as accurately as possible in the medical record, so patient preferences can be consistently reflected in the care they receive."

Elaine Spangler, who lives with metastatic breast cancer, underscores how important it is for clinicians to have meaningful conversations with their patients and to continue this dialogue as circumstances evolve.

Accounting for Life's Complexity

Understanding patient goals requires ongoing effort, as needs and priorities evolve throughout treatment. "A cancer diagnosis alone represents a drastic life change, and when faced with advanced cancer or a poor prognosis, everyone reacts differently based on their life circumstances," Chwistek noted.

Some patients prioritize aggressive care, while others might value independent living or attending major life events like weddings or graduations. "We all have our own goals," he said, emphasizing the deeply personal nature of these decisions.

A key component of the Goal Concordant Care framework is helping clinicians identify which patients would benefit most from timely goals-of-care discussions. This involves systematic assessment that combines clinical intuition with objective evidence, helping clinicians prioritize these important conversations based on each patient's individual circumstances.

Capturing this information - and how it evolves over time - proves essential in crafting goal-concordant recommendations that truly serve each patient's authentic wishes.

Patient and Caregiver Voices: Why These Conversations Matter

The importance of Goal Concordant Care becomes even clearer when listening to patients and caregivers. Two members of Fox Chase Cancer Center's Patient and Family Advisory Council, Elaine Spangler and Ray Cormier, shared perspectives that highlight the emotional, practical, and deeply personal dimensions of aligning treatment with what matters most.

Spangler, who is living with metastatic breast cancer, described how patients often carry a constant awareness of their own mortality-an awareness that shapes every treatment decision, hope, and fear. Sitting through hours-long infusions, she reflects not only on her disease, but on family, milestones, and the life she is determined to live with intention. Her greatest concern is not hearing difficult news too late. "We're not afraid to talk about it," she emphasized. "Doctors shouldn't shy away. We want honest conversations-and we want caregivers included in those conversations too."

For Spangler, Goal Concordant Care is not an abstract concept but a safeguard for agency, dignity, and clarity. She spoke about the tension many patients feel: forced to live up to societal expectations as a "warrior" while also trying to fully live their lives. She underscored how important it is for clinicians to ask about meaningful goals - like attending family events or staying independent - and to revisit those goals as circumstances evolve. Even end-of-life preferences, such as her wish to donate her corneas, emerged because a clinician took time to educate and listen.

Ray and Martha Cormier met online in March of 2018 and romance quickly followed. They took their time in courtship, enjoying each other's company over dinner or trips to Ocean City, N.J. - their happy place. They married over Memorial Day Weekend in 2022. In August, she was diagnosed with esophageal cancer. In September, he learned he had prostate cancer.

"Marty had surgery in the middle of September, and I became her caregiver and advocate, but she became the same for me," Cormier said.

According to Cormier, conversations with his doctors after biopsy showed he could manage under surveillance, which allowed him to focus on his wife. He recalls that each step along the journey involved a conversation about expectations and concerns. He described the emotional weight of caregiving-navigating uncertainty, advocating for comfort, and supporting a loved one through setbacks and hope alike. What mattered most to him was the clinicians who took time to listen, whether during long radiation sessions or during late-night phone calls when symptoms worsened.

"Listening isn't just about the medical problems," he said. "It's the emotional connection. It's understanding where the patient and caregiver are in that moment."

His experience reflects how caregivers often prioritize their loved one's comfort above all else, even when facing their own health challenges. For Cormier, the concept of Goal Concordant Care affirms the partnership between families and clinicians, ensuring decisions consider both the patient's wishes and the caregiver's reality.

Ray Cormier understands goals of care from both a patient and a caregiver perspective, emphasizing that the emotional connection with clinicians is important in illuminating what matters most to families going through cancer.

Validation and Leadership Across Disciplines

Chwistek's leadership in this work recently earned recognition at Harvard Medical School. He took part in the prestigious Safety, Quality, Informatics, and Leadership (SQIL) program, a year-long program in which his capstone project was selected as one of the top three among nearly 100 participants from across the globe.

What surprised him most was how broadly the work resonated. "A cardiologist caring for patients with heart failure, an ICU physician managing end-of-life decisions-they saw how Goal Concordant Care could transform their practice too," he said. "I was reinvigorated by the entire experience."

"It felt important that people outside of oncology recognized the value in what we have been working on for Goal Concordant Care," Chwistek reflected. "I think we all learned from each other in the process, and I look forward to bringing some of their insights back to Fox Chase and my partners across ADCC."

As healthcare continues to evolve toward more personalized, value-based care, Chwistek believes this work provides a roadmap for ensuring that technological advances and clinical excellence serve the ultimate goal-honoring what matters most to patients facing serious illness.

"Doctors shouldn't shy away. We want honest conversations-and we want caregivers included in those conversations too." - Elaine Spangler