End-of-Life Care: What Research Shows About Preferences, Quality, and Palliative Approaches

End-of-life care has become an important area of health services research as the population ages, medical technology extends the biological process of dying, and public awareness of hospice and palliative care has grown. Research on how Americans prefer to die, how they actually die, and the gap between these two realities has informed a cultural and policy conversation about what constitutes good care at the end of life and what changes in medical practice, financing, and patient-provider communication would be necessary to provide it. Patient preferences for end-of-life care, assessed through surveys and qualitative research, consistently find that most Americans prefer to die at home or in a home-like setting, wish to remain free from pain, want to maintain control over care decisions, and hope to be surrounded by loved ones. Research using focus groups and interviews finds that patients highly value communication with their physicians about prognosis and treatment options, and that they want their physicians to understand their goals and values rather than defaulting to aggressive intervention. The gap between expressed preferences and actual dying experiences is significant and well-documented. Research on place of death and healthcare utilization at end of life finds that most Americans still die in hospitals or institutional settings, that large proportions of patients spend time in intensive care units in their final weeks of life, and that aggressive interventional care continues at high rates near death even for patients who have expressed preferences for comfort-focused care. This gap reflects multiple contributing factors including inadequate advance care planning, poor communication between patients and providers, financial incentives that favor intervention, and cultural norms in medicine that frame death as failure. Advance care planning, which involves documenting preferences for future medical care in formal documents including advance directives, healthcare proxies, and physician orders for life-sustaining treatment, is associated with end-of-life care that better aligns with patient preferences. Research on advance care planning finds that patients who have engaged in planning, and who have documented their preferences in ways that are accessible to treating clinicians, receive more goal-concordant care than those who have not. However, advance care planning rates remain low in the general population, and even when documents exist, they are often not accessed or followed in emergency situations. Hospice care, which provides comfort-focused care without curative intent for patients with life-limiting illness and a prognosis of six months or less, has a strong evidence base for improving quality of life at end of life. Research on hospice use and outcomes finds that hospice patients report less pain and better symptom control, are more likely to die in their preferred setting, and have better psychological wellbeing in their final weeks than comparable patients not receiving hospice. Family members of hospice patients report higher satisfaction with care and lower rates of complicated grief. Contrary to early concerns, research finds that hospice enrollment is associated with similar or longer survival compared to continued aggressive treatment for several conditions including cancer and heart failure. Hospice utilization has grown significantly as awareness and acceptance have increased, but concerns about late enrollment persist. Research on hospice enrollment timing finds that a large proportion of hospice patients are enrolled for very short periods before death, often days or weeks rather than the months that would allow fuller benefit from the services. Late enrollment reflects multiple barriers including physician reluctance to discuss prognosis, patient and family hope for recovery, referral patterns that prioritize hospice as a last resort rather than a valued option throughout serious illness, and financial structures that require forgoing curative treatment to access hospice benefits. Palliative care, which provides specialized symptom management and support for patients with serious illness regardless of whether they are receiving curative treatment, is increasingly recognized as compatible with and complementary to disease-directed care. Research on early palliative care integration finds that patients who receive palliative care alongside oncology treatment report better symptom control, less depression, and in some studies longer survival than those who receive oncology care alone. This finding has contributed to a shift in how palliative care is framed and delivered, from a end-of-life specialty to a service integrated throughout serious illness. Disparities in end-of-life care are documented across racial, ethnic, and socioeconomic lines. Research finds that Black and Latino patients are less likely to use hospice services, more likely to receive aggressive end-of-life care, and less likely to have advance care planning conversations with their providers than white patients. Cultural factors including different orientations toward hope, family decision-making, distrust of the healthcare system, and different cultural understandings of a good death contribute to these differences. Designing hospice and palliative care services that are culturally responsive and that engage communities with diverse perspectives on dying is a recognized need in the field.