For decades, the term "palliative care" has existed in a state of linguistic purgatory within the oncology community. Too often, it is treated as a synonym for hospice—a final, somber chapter reserved for when curative efforts have been exhausted. However, a growing movement of experts is working to shatter this misconception, arguing that delaying palliative care is not just a missed opportunity; it is a clinical failure that compromises patient outcomes.
Susan Hedlund, MSW, LCSW, FAOSW, Director of Supportive Care Initiatives at the Sheri and Les Biller Family Foundation, stands at the forefront of this shift. With over 40 years of experience in oncology social work and national advocacy, Hedlund is championing a fundamental evolution: moving palliative care and psychosocial support "upstream"—integrating them early, consistently, and comprehensively throughout the entire cancer continuum.
The Core Mandate: Redefining Palliative Care
At its heart, the push for upstream integration is about humanizing oncology. Hedlund emphasizes that palliative care is not about stopping treatment; it is about facilitating the patient’s ability to survive and thrive during the rigors of modern cancer therapies.
"For patients, particularly those with high-symptom burdens—such as pancreatic, ovarian, brain, or head and neck cancers—palliative care is a clinical tool for success," Hedlund explains. "It provides the symptom management necessary to help patients actually complete their prescribed courses of treatment. Regardless of prognosis, early palliative intervention improves quality of life, increases patient satisfaction, and significantly enhances compliance with recommended therapies."
Beyond symptom relief, Hedlund points to the concept of "goal-concordant care." By eliciting what truly matters to a patient early in their diagnosis, clinicians can align their medical strategy with the patient’s personal values. This alignment prevents the "treatment at all costs" mentality that often leads to medical trauma and unnecessary hospitalizations, ultimately reducing the financial burden on both the patient and the healthcare system.
A Chronology of the Shift
The transition toward integrated, "whole person" care has been a gradual, decades-long journey:
- The 1990s: The foundation for modern advocacy is laid as social workers and pioneers like Hedlund begin addressing the psychological impacts of cancer diagnosis, moving beyond simple discharge planning.
- 2010: A landmark study published in the New England Journal of Medicine by Temel et al. provides the "smoking gun" for the oncology community, demonstrating that early palliative care not only improves quality of life for patients with metastatic non-small-cell lung cancer but can actually extend survival.
- 2015–2020: The Commission on Cancer (CoC) begins mandating psychosocial screening for accredited cancer programs, forcing institutions to acknowledge the mental health needs of their patient populations.
- 2025–Present: The focus shifts from merely identifying needs to achieving systemic reimbursement. Experts are now pushing for "whole person" care to be recognized as a billable, standard-of-care service, rather than an optional "value-add."
Supporting Data and Clinical Evidence
The argument for integrating supportive care is bolstered by a wealth of data indicating that current models are often inefficient. Approximately 85% of cancer patients in the United States are treated in community-based settings, where resources are often thinner than in academic medical centers.
The disconnect is clear: while medical oncology has become increasingly sophisticated with immunotherapy and precision medicine, the psychosocial support infrastructure has lagged.
- Financial Impact: Without robust psychosocial support, patients are more likely to land in the Emergency Department (ED) for symptoms that could have been managed in an outpatient clinic. This leads to higher institutional costs and fragmented, often substandard, care.
- The Caregiver Crisis: Research consistently shows that family caregivers, who are increasingly tasked with complex home care duties, face significant burnout. Without proactive support, their capacity to provide care for the patient diminishes, leading to poor clinical outcomes for both.
- Survival Data: The Temel study remains the gold standard, proving that patients who receive early palliative care have less aggressive end-of-life care and, in some cases, longer life expectancy due to better symptom management and adherence to treatment protocols.
Official Responses and Institutional Hurdles
Despite the clear benefits, institutional resistance remains a primary barrier. In many hospital systems, oncology social work is treated as a cost center rather than a revenue-generating service.
"In centers where finances are the main drivers, these services may be seen as a cost versus a value," Hedlund notes. "Social workers are the largest providers of mental health support in many centers, but their roles are often limited by administrative constraints. They are frequently relegated to resource allocation and discharge planning, preventing them from practicing at the ‘top of their license’—which would be providing actual counseling and long-term psychosocial support."
This is further exacerbated in rural environments, where the lack of specialized professionals creates a "care desert." To combat this, experts are calling for a policy overhaul: mandating that "whole person" care—including spiritual support, nutritional counseling, physical rehabilitation, and psychological care—be integrated into the standard reimbursement model for oncology.
Practical Strategies for Modern Oncology Teams
For oncologists and administrators looking to bridge these gaps, Hedlund offers a roadmap for implementation in resource-constrained environments:
1. Leverage Community Partnerships
Oncology teams do not need to be experts in every facet of psychosocial care. By developing formal partnerships with community wellness centers, nutritional programs, and local mental health agencies, hospitals can extend their reach without bearing the full cost of staffing.
2. Embrace Telehealth
The geographic barriers that define rural oncology can be significantly mitigated through tele-psychosocial support. Virtual counseling sessions allow patients to access specialized mental health professionals without the need for additional travel—a critical factor for those already burdened by the physical effects of treatment.
3. Deploy Community Health Workers
For vulnerable populations—including non-English speakers and those in marginalized communities—trust is the primary barrier to care. Community health workers can act as cultural brokers, helping patients navigate the complexities of the healthcare system and ensuring that their specific needs are voiced to the primary oncology team.
4. Proactive Caregiver Integration
"We are sometimes so focused on the patient that we forget to ask the caregiver how they are doing," says Hedlund. Oncology teams should implement routine caregiver assessments, ensuring that family members are included in the care plan from day one. This prevents the "crisis point" that often occurs when a family member is overwhelmed by the unexpected responsibilities of patient care.
Implications for the Future of Oncology
The vision for the future is clear: oncology must evolve from a disease-centric model to a person-centric model. This means that at the moment of diagnosis, a patient should be assigned a care plan that addresses their cancer, their symptom management, their mental health, and their financial and social stability.
If the oncology community can succeed in securing policy changes that mandate reimbursement for these services, the result will be a more resilient, compliant, and satisfied patient population. As the number of cancer survivors grows exponentially, the physical, psychological, and financial needs of these individuals will continue to evolve.
"At the heart of this is the patient at the center," Hedlund concludes. "It is about understanding their needs, priorities, and concerns, including family caregivers, and ensuring that we continue to partner throughout the entire continuum—from the moment of diagnosis through survivorship, and if necessary, to the end of life."
The call to action is professional, urgent, and necessary. The integration of palliative and psychosocial care is no longer a "nice-to-have" add-on; it is an essential component of clinical excellence. For the modern oncologist, the measure of success is shifting from the tumor response alone to the health and well-being of the whole person.
For more information on the evolving standards of oncology social care, readers are encouraged to consult the resources provided by the Association of Oncology Social Work (AOSW) at www.aosw.org.
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