Navigating End-of-Life Discussions: A Practical Guide for Oncology Professionals
"Empowering oncologists with tools and strategies to facilitate goals-of-care conversations, improve patient understanding, and enhance end-of-life care."
Goals-of-care conversations, expertly led by oncologists, are vital for enhancing prognostic awareness among patients and their families. However, these discussions frequently fall short, failing to adequately prepare individuals for advance care planning and appropriate end-of-life arrangements. Recognizing this critical gap, our institution initiated a Phase 3 trial, integrating palliative care into the standard treatment protocols for Phase 1 clinical trial participants. This initiative provided a unique opportunity to develop and implement an electronic medical record (EMR)-based goals-of-care template designed to facilitate more effective and comprehensive discussions.
This goals-of-care template allows healthcare professionals to complete all or selected sections in consultation with patients, ensuring comprehensive coverage of essential topics such as transitioning to hospice care and addressing legacy concerns. A key benefit of this approach is that it ensures all providers are aligned and 'on the same page' regarding treatment plans. Integrated within our EMR as a SmartPhrase, the template can be easily accessed and completed, proving instrumental in clarifying patient understanding. Furthermore, the template serves as a valuable tool for documenting advance care planning, supporting both clinical care and accurate billing practices.
While this tool has not undergone formal testing, its effectiveness in day-to-day practice and research has been evident. This article shares our experiences and insights, offering a practical, doable template with the hope that others will find it equally beneficial in enhancing their approach to end-of-life care discussions.
Comfort-Focused, Individualized Care
The ESMO guideline focuses on the last weeks and days of life for adults with advanced cancer. It describes the goal of care at this stage as comfort, with individualized management of quality of life and an approach to the patient's death. ASCO's 2024 clinical practice guideline update on integrating palliative care into oncology is described as aspirational because significant practical limitations hinder its application. ASCO's evidence-based cancer care standards can nevertheless provide frameworks for best practices, policies, procedures, and quality monitoring.
From Hospice to Integrated Care
Modern palliative care evolved from the British Hospice model and has become an essential element of comprehensive and integrated health care. Historical accounts describe the rise of hospice and palliative care and its eventual recognition as a formal discipline. The field has also shifted from institutional, late care for terminal cancer patients toward timely community- and population-based care linked with chronic-care models. Compassionate-community initiatives further seek to involve society in changing attitudes toward end of life and developing integrated care at the community level.
Why Goals-of-Care Conversations Matter: Improving End-of-Life Care
Goals-of-care conversations, when skillfully conducted by oncologists, present a pivotal opportunity to enhance advance care planning and end-of-life care. However, it's concerning that many patients do not fully grasp the essentials during these discussions. A study focusing on patient expectations regarding chemotherapy revealed that a significant proportion of patients with lung or colorectal cancers held the misconception that palliative chemotherapy, radiation, and/or surgery could lead to a cure. Such misunderstandings underscore the urgent need for improved patient education.
- Reduced Readmission Rates: Palliative care consultation led to lower 30-day readmission rates in a large urban hospital.
- Improved Outcomes with GoC: Patients receiving consultations that included GoC discussions, alongside symptom management, experienced even lower hospital readmission rates.
- Study Findings: Research indicates that incorporating GoC discussions results in better patient outcomes and reduced aggressive end-of-life care.
Communication, Documentation, and Patient-Centered Systems
Recent work on palliative care for people with advanced cancer in phase 1 clinical trials recommends debriefing sessions for palliative care providers and research teams to address patients' needs. User-centered electronic health record design has been proposed to support advance care planning in oncology after the Institute of Medicine called for care in which patient values guide clinical decisions. Interactive serious-illness-conversation programs provide clinicians with guidance and tools for empathetic communication and sensitive topics. A novel assessment tool was used to review 100 inpatient goals-of-care notes, including 25 notes from each of four clinical specialties, with or without a palliative care consult.
Missed Conversations and Poor Coordination
Goals-of-care communication is recommended as a way to increase the value of cancer care near the end of life, but research continues to examine how patients can be engaged in conversations about their personal priorities. Patients with advanced cancer often experience difficult symptoms while the integration of oncology and palliative care remains lacking or poorly coordinated. A qualitative analysis of 423 outpatient encounters found only 21 encounters involving discussions about end-of-life topics such as advance care planning, palliative care, treatment discontinuation, hospice, or after-death wishes. These findings identify missed opportunities alongside broader ethical and multidisciplinary challenges in oncology end-of-life care.
Empowering Patient-Centered Care Through Enhanced Communication
Our approach to integrating goals-of-care discussions emphasizes a patient- and family-centered approach, aligning with our TEAM (Time, Education, Assessment, and Management) framework. By prioritizing open communication and shared decision-making, we strive to enhance the quality of care and support patients in making informed choices that reflect their values and preferences. Ultimately, this comprehensive approach fosters a more compassionate and effective healthcare experience for individuals facing serious illnesses.
Recognizing the End of Life
Recognizing and acknowledging that a patient with cancer is at the end of life can be challenging. A 2024 study identified the importance of experience, organizational structures, and a shared understanding in this process. Chemotherapy administered during the last month of life is reported to provide minimal life extension and may worsen quality of life, while chemotherapy within 14 days of death is used as a quality metric for aggressive end-of-life care. Ethical challenges can also arise when patients encounter hospitalists or intensivists during acute illness, even when they previously had therapeutic relationships with their oncologists.
More Accessible Supportive Care
The National Cancer Institute describes planning the transition to end-of-life care in advanced cancer as involving challenging and emotionally distressing decisions. Its clinician summary addresses likely discussion topics and strategies for improving communication and decision making between patients and oncologists. Recent reviews describe advances in palliative and supportive care as promising ways to improve access and prevent or relieve avoidable suffering through evidence-based approaches. Future cancer care may also require modernizing cancer-center resources and capabilities to reflect increasing complexity, while 2026 trends emphasize digital navigation tools, survivorship support, affordability, and equitable access.
Values, Culture, and Patient-Centered Care
A case study titled "Cancer: A Failure to Communicate" shows how cultural misunderstandings can interfere with medical care for a patient with cancer. Patient-centered care places the patient at the center of the treatment process by focusing on their needs, values, and wishes when developing a health care plan. This approach can become more complex when people are facing the end of their lives. Research on palliative and end-of-life care has influenced how preferences are respected, supported, and achieved, with effects on policy, clinical practice, training, and institutionalization at the time of death.