PapersFlow Research Brief
Palliative Care and End-of-Life Issues
Research Guide
What is Palliative Care and End-of-Life Issues?
Palliative care and end-of-life issues is the clinical and ethical domain focused on relieving suffering and supporting decision-making for people with serious illness, including communication about prognosis, goals of care, and the quality of dying and death.
The research literature on palliative care and end-of-life issues spans 157,411 works and examines how symptom management, communication, and shared decision-making affect patient and caregiver outcomes near the end of life. "Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer" (2010) reported that early palliative care improved quality of life and mood and was associated with less aggressive end-of-life care alongside longer survival. Communication frameworks and decision-science concepts used in this area include "SPIKES—A Six-Step Protocol for Delivering Bad News: Application to the Patient with Cancer" (2000) and "Shared decision-making in the medical encounter: What does it mean? (or it takes at least two to tango)" (1997).
Topic Hierarchy
Research Sub-Topics
Early Palliative Care Integration
Studies evaluate early palliative care alongside disease-directed therapy in advanced cancer and chronic illness, measuring impacts on symptoms, quality of life, and healthcare utilization. Randomized trials assess optimal timing and delivery models.
Advance Care Planning Interventions
Researchers design and test communication tools, decision aids, and clinician training to facilitate advance care planning discussions. Effectiveness trials examine completion rates, congruence with wishes, and end-of-life care alignment.
Prognostic Disclosure in Palliative Care
This subfield examines strategies for communicating prognosis to patients and families, evaluating truth-telling frameworks, response patterns, and psychological impacts. Cultural adaptations address disclosure preferences globally.
Family Caregiver Burden in Palliative Care
Investigations quantify caregiver distress, unmet needs, and bereavement outcomes in palliative settings using validated scales. Interventions target support programs to mitigate long-term psychological morbidity.
Palliative Care Economic Evaluations
Economic analyses model cost-effectiveness of palliative care models, including hospital avoidance and resource allocation in ICU settings. Health technology assessments inform policy and reimbursement decisions.
Why It Matters
Palliative care research directly informs how clinicians communicate about prognosis, align treatments with patient values, and avoid unwanted high-intensity care near death. In oncology, Temel et al. (2010) in "Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer" found that early palliative care improved patients’ quality of life and mood and was linked to less aggressive care at the end of life while also reporting longer survival, making it a concrete model for integrating specialty palliative care alongside disease-directed treatment. For communication practice, Baile et al. (2000) in "SPIKES—A Six-Step Protocol for Delivering Bad News: Application to the Patient with Cancer" provides a structured approach for delivering serious news, which is central to advance care planning and prognostic disclosure. At the health-system level, Jencks et al. (2009) in "Rehospitalizations among Patients in the Medicare Fee-for-Service Program" highlighted that rehospitalizations among Medicare beneficiaries are prevalent and costly, supporting the practical relevance of care planning and coordination for seriously ill patients who are at risk of repeated hospital transitions. Wright (2008) in "Associations Between End-of-Life Discussions, Patient Mental Health, Medical Care Near Death, and Caregiver Bereavement Adjustment" linked end-of-life discussions to less aggressive medical care near death and earlier hospice referral, connecting clinician–patient conversations to measurable differences in care patterns and caregiver outcomes.
Reading Guide
Where to Start
Start with Temel et al. (2010), "Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer," because it concretely links an identifiable care model (early palliative care) to patient-centered outcomes (quality of life, mood) and end-of-life utilization (less aggressive care) while also reporting longer survival.
Key Papers Explained
Temel et al. (2010) "Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer" provides evidence that integrating palliative care early can change both patient-reported outcomes and end-of-life care patterns. Wright (2008) "Associations Between End-of-Life Discussions, Patient Mental Health, Medical Care Near Death, and Caregiver Bereavement Adjustment" connects communication about end-of-life preferences to downstream care intensity and caregiver outcomes, offering a mechanism for why early palliative involvement might matter. Baile et al. (2000) "SPIKES—A Six-Step Protocol for Delivering Bad News: Application to the Patient with Cancer" provides a pragmatic method for the difficult conversations that underpin advance care planning and prognostic disclosure. Charles et al. (1997) "Shared decision-making in the medical encounter: What does it mean? (or it takes at least two to tango)" and Barry and Edgman-Levitan (2012) "Shared Decision Making — The Pinnacle of Patient-Centered Care" supply the conceptual framework for aligning treatments with patient goals. Connors et al. (1995) "A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). The SUPPORT Principal Investigators" serves as a cautionary anchor that communication-focused interventions may fail if not implemented in a way that changes care processes and outcomes.
Paper Timeline
Most-cited paper highlighted in red. Papers ordered chronologically.
Advanced Directions
Recent directions emphasized by the provided sources include strengthening serious-illness communication workflows (building from "SPIKES—A Six-Step Protocol for Delivering Bad News: Application to the Patient with Cancer" (2000) and shared decision-making frameworks from 1997 and 2012) and designing system-level interventions that succeed where SUPPORT did not (Connors et al., 1995). Another frontier is reducing avoidable hospital transitions and rehospitalizations described in "Rehospitalizations among Patients in the Medicare Fee-for-Service Program" (2009) while maintaining goal-concordant care near death, as suggested by the association between end-of-life discussions and less aggressive care in Wright (2008).
Papers at a Glance
| # | Paper | Year | Venue | Citations | Open Access |
|---|---|---|---|---|---|
| 1 | Early Palliative Care for Patients with Metastatic Non–Small-C... | 2010 | New England Journal of... | 7.2K | ✕ |
| 2 | Rehospitalizations among Patients in the Medicare Fee-for-Serv... | 2009 | New England Journal of... | 5.1K | ✕ |
| 3 | Principles of Good Practice for the Translation and Cultural A... | 2005 | Value in Health | 5.0K | ✓ |
| 4 | On death and dying. | 1975 | PubMed | 4.9K | ✕ |
| 5 | Shared decision-making in the medical encounter: What does it ... | 1997 | Social Science & Medicine | 4.0K | ✕ |
| 6 | Chronic Health Conditions in Adult Survivors of Childhood Cancer | 2006 | New England Journal of... | 3.5K | ✕ |
| 7 | Shared Decision Making — The Pinnacle of Patient-Centered Care | 2012 | New England Journal of... | 3.3K | ✕ |
| 8 | SPIKES—A Six-Step Protocol for Delivering Bad News: Applicatio... | 2000 | The Oncologist | 2.9K | ✓ |
| 9 | A controlled trial to improve care for seriously ill hospitali... | 1995 | JAMA | 2.8K | ✕ |
| 10 | Associations Between End-of-Life Discussions, Patient Mental H... | 2008 | JAMA | 2.7K | ✓ |
In the News
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Code & Tools
### End of Life FHIR API Implementation Guide for creating End of Life APIs **Visit the APIs »** ## Table of contents * Quick start * Status...
This repository is used in the NHS England FHIR Implementation Guide NHS England IOPS Validation) ## Developers Information
The purpose of the PCORnet Common Data Model (CDM) Forum is discussion related to CDM interpretation and implementation. We hope to connect people ...
## Table of Contents
"description": "Palliative care planning for nursing home residents with advanced dementia is often suboptimal. This study compared effects of faci...
Recent Preprints
Home-Based Palliative Care: Benefits, Challenges ...
Home-based palliative care (HBPC) has emerged as a critical model to address the complex needs of individuals with life-limiting illnesses, particularly in super-aged societies. This review explore...
End-of-Life Palliative Care: Role of the Family Physician
To care for patients at the end of life, family physicians should be able to evaluate the causes of symptoms, differentiate between distressing symptoms and common end-of-life changes, and balance ...
Patients’ experiences of quality in palliative care and advance care planning in primary care: a qualitative study
research to explore patients’ experience and perceptions of palliative care and advance care planning in the primary healthcare context. Methods The aim of this study was thus to explore patients’ ...
End-of-Life Palliative Care: Role of the Family Physician | AAFP
palliative care health care professionals seek to improve patient and family quality of life by clarifying goals of care across all ages and stages of life. An American Academy of Family Physicians...
Acute care nurses' perspectives on end-of-life dreams and ...
- Previous article in issue - Next article in issue ## Keywords Acute care End of life Palliative care Nurse-patient interaction Nursing assessment End-of-life dreams and visions Delirium...
Latest Developments
Recent developments in palliative care and end-of-life research include updates on best practices and innovative approaches discussed at the 2026 CME Conference, the latest academic research highlighted at the 2025 National Symposium, and the upcoming International Conference in Boston in June 2026 focusing on pain management and compassionate care (Mayo Clinic, CSU Palliative Care, SRC Meetings). Additionally, a 2026 article discusses trends in hospice care, and a special issue from MDPI emphasizes recent advances and challenges, including telemedicine and inclusive care approaches (Hospice News, MDPI).
Sources
Frequently Asked Questions
What is meant by palliative care and end-of-life issues in the medical literature?
Palliative care and end-of-life issues refers to research and practice focused on improving quality of life for patients with serious illness through symptom relief, communication, and goal-concordant decision-making. Temel et al. (2010) in "Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer" exemplifies this by evaluating early palliative care’s effects on quality of life, mood, end-of-life care intensity, and survival.
How does early palliative care affect outcomes for patients with advanced cancer?
Temel et al. (2010) in "Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer" reported significant improvements in quality of life and mood for patients receiving early palliative care compared with standard care. The same study reported less aggressive care at the end of life and longer survival in the early palliative care group.
How are end-of-life discussions associated with the type of care patients receive near death?
Wright (2008) in "Associations Between End-of-Life Discussions, Patient Mental Health, Medical Care Near Death, and Caregiver Bereavement Adjustment" reported that end-of-life discussions are associated with less aggressive medical care near death and earlier hospice referrals. The study also reported that aggressive care is associated with worse patient quality of life and worse caregiver bereavement adjustment.
Which methods are used to communicate prognosis and deliver bad news in serious illness care?
Baile et al. (2000) in "SPIKES—A Six-Step Protocol for Delivering Bad News: Application to the Patient with Cancer" described a six-step protocol designed to meet requirements defined by published research on breaking bad news to patients with cancer. Shared decision-making concepts that often frame these conversations are articulated in Charles et al. (1997) "Shared decision-making in the medical encounter: What does it mean? (or it takes at least two to tango)" and Barry and Edgman-Levitan (2012) "Shared Decision Making — The Pinnacle of Patient-Centered Care".
Why has shared decision-making become central to palliative and end-of-life care?
Charles et al. (1997) in "Shared decision-making in the medical encounter: What does it mean? (or it takes at least two to tango)" analyzed what shared decision-making means in clinical encounters, emphasizing that decisions require participation by both clinician and patient. Barry and Edgman-Levitan (2012) in "Shared Decision Making — The Pinnacle of Patient-Centered Care" argued that active engagement of patients is a defining attribute of patient-centered care when facing consequential medical choices.
What do major trials suggest about improving hospital care for seriously ill patients?
Connors et al. (1995) in "A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). The SUPPORT Principal Investigators" reported substantial shortcomings in care for seriously ill hospitalized adults in its observational phase. The intervention phase failed to improve care or patient outcomes, and the authors noted that increasing opportunities for patient–physician communication, while advocated, was not sufficient in that form.
Open Research Questions
- ? Which specific components of early palliative care drive the combination of improved quality of life, reduced end-of-life care aggressiveness, and longer survival reported in "Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer" (2010)?
- ? How can interventions avoid the failure mode observed in "A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). The SUPPORT Principal Investigators" (1995) while still improving prognostic understanding and goal-concordant care?
- ? Which elements of serious-illness communication best explain the associations in "Associations Between End-of-Life Discussions, Patient Mental Health, Medical Care Near Death, and Caregiver Bereavement Adjustment" (2008) between discussions, hospice referral timing, and caregiver bereavement outcomes?
- ? How should shared decision-making constructs from "Shared decision-making in the medical encounter: What does it mean? (or it takes at least two to tango)" (1997) and "Shared Decision Making — The Pinnacle of Patient-Centered Care" (2012) be operationalized and measured in end-of-life care studies?
- ? How can health systems reduce prevalent and costly rehospitalizations described in "Rehospitalizations among Patients in the Medicare Fee-for-Service Program" (2009) for patients with serious illness without increasing unwanted care intensity near the end of life?
Recent Trends
The provided corpus size (157,411 works) indicates a large, mature research area focused on integrating palliative care into standard treatment pathways and improving communication and decision quality near the end of life.
Highly cited work continues to anchor practice around early integration (Temel et al., 2010, "Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer") and structured communication (Baile et al., 2000, "SPIKES—A Six-Step Protocol for Delivering Bad News: Application to the Patient with Cancer"), while persistent implementation challenges are underscored by the negative intervention results in Connors et al. "A controlled trial to improve care for seriously ill hospitalized patients.
1995The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT).
The SUPPORT Principal Investigators." Health-system pressures relevant to end-of-life care coordination remain salient given Jencks et al. "Rehospitalizations among Patients in the Medicare Fee-for-Service Program," which characterized rehospitalizations among Medicare beneficiaries as prevalent and costly, motivating interventions that better align care settings and treatment intensity with patient goals.
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