5-04: Care of Patients at the End of Life

In the United States, more than 2.85 million people die each year. Approximately 56 million people die each year worldwide. COVID-19 has emerged as a common cause of death both in the United States and around the world. Caring for patients at the end of life is an important responsibility and a rewarding opportunity for clinicians. From the medical perspective, the end of life may be defined as that time when death—whether due to terminal, acute or chronic illness—is expected within hours to months and can no longer be reasonably forestalled by medical intervention. Palliative care at the end of life focuses on relieving distressing symptoms and promoting quality of life, as it does in all other stages of illness. For patients at the end of life, palliative care may become the sole focus of care. While there are many topics—including prognosis, communication, psychological and cultural considerations, and clinician self-care—that are relevant throughout the course of palliative care—the topics below are considered with a particular focus on care for patients who are at the end of life.

PROGNOSIS AT THE END OF LIFE

Clinicians must help patients understand when they are approaching the end of life. Most patients, and their family caregivers, want accurate prognostic information. This information influences patients’ treatment decisions, may change how they spend their remaining time, and does not negatively impact patient survival. One-half or more of cancer patients do not understand that many treatments they might be offered are palliative and not curative. Patients require support for any distress that may accompany discussions of prognostic information.

While certain diseases, such as cancer, are more amenable to prognostic estimates, the other common causes of death—including heart disease, stroke, chronic lung disease, dementia, and COVID-19—have more variable trajectories and difficult-to-predict prognoses. Even for patients with cancer, clinician estimates of prognosis are often inaccurate and generally overly optimistic. The advent of new anticancer treatments including immunotherapy and targeted therapies has made prognosis more challenging in some cancers. Nonetheless, clinical experience, epidemiologic data, guidelines from professional organizations, and computer modeling and prediction tools (eg, the Palliative Performance Scale or http://eprognosis.ucsf.edu) may be used to offer patients more realistic estimates of prognosis. To determine whether a discussion of prognosis would be appropriate, clinicians can also ask themselves “Would I be surprised if this patient died in the next year?” If the answer is “no,” then the clinician should initiate a discussion. Recognizing that patients may have different levels of comfort with prognostic information, clinicians can introduce the topic by simply saying, “I have information about the likely time course of your illness. Would you like to talk about it?”