End-of-life care is complex and challenging for patients and health professionals alike. Hospitals, skilled nursing facilities and community sites often have differing definitions and protocols, meaning there is no seamless way to transfer patients from one setting to another. In addition, many physicians lack access to resources to support them in making informed decisions to help their patients.
The need to help physicians guide patients and families during these difficult times is persistent. At the 2022 AMA Annual Meeting, the House of Delegates directed the AMA to work in conjunction with interested stakeholders to “provide educational resources for medical students, physicians, allied health professionals and patients and their families on end-of-life care.”
The AMA Code of Medical Ethics states: “Caring for patients at the end of life is a privilege that draws deeply on physicians’ commitment to alleviate suffering. Physicians must help patients identify what matters most to them when cure is no longer possible and to negotiate difficult decisions about what trade-off to accept between quality and quantity of life, what interventions to accept, and when to refuse efforts to sustain life.”
Read detailed guidance from Code of Medical Ethics’ Chapter 5, “Caring for Patients at the End of Life,” which covers:
- Advance care planning.
- Advance directives.
- Withholding or withdrawing life-sustaining treatment.
- Orders not to attempt resuscitation.
- Medically ineffective interventions.
- Sedation to unconsciousness in end-of-life care.
- Physician-assisted suicide.
The AMA also features a wide range of educational resources in a variety of formats—including articles, podcasts and videos—on palliative care, hospice care and end-of-life medical training on AMA Ed Hub™. Among them are the ones highlighted below.
- Explore the latest in end-of-life care, including hospice and palliative care, estimating prognosis and palliative sedation, and more in this topic collection.
- Browse education to increase knowledge and competence in hospice and palliative medicine.
- These cases give physicians and other health professionals virtual patient simulations of clinical encounters related to the care of older adults.
- In this episode, Dr. Grant Smith and Dr. Brook Calton discuss how the pandemic has changed palliative care. They discuss the challenges guiding families through difficult conversations via video or mobile phone and the role palliative care teams have had as an added layer of support to family and staff to prevent burnout.
- This episode explores palliative surgery and the process of exploring goals of surgery with pediatric palliative care patients and their guardians.
- Featured guests are: C. Alessandra Colaianni, MD, MPhil, an otolaryngologist-head and neck surgeon focusing on the treatment of patients with benign and malignant tumors of the head and neck at Harvard Medical School; and Wynne Morrison, MD, MBE, the director of the Justin Michael Ingerman Center for Palliative Care and associate chief for faculty affairs in the critical care division at Children's Hospital of Philadelphia.
- Palliative surgery is often defined as surgical intervention with intent to improve a patient's quality of life by relieving suffering secondary to symptoms of advanced disease. In the context of shared decision making about palliative surgery intervention, tensions can arise between patient (or surrogate) and surgeon, who might not share goals and values.
- This article suggests that a surgeon's clinical and ethical duty is to identify goals of care, including those related to quality of life, from a patient's perspective and to consider how to achieve them.
- Other relevant materials available from the AMA Journal of Ethics® include: “Holding Curative and Palliative Intentions,” “When Should Neuroendovascular Care for Patients With Acute Stroke Be Palliative?” and “How Should Surgeons Communicate About Palliative and Curative Intentions, Purposes, and Outcomes?”
- Understand how palliative care for patients with cancer has had to adjust during the pandemic. JN Learning also explores: “Early Intervention of Palliative Care in the Emergency Department During the COVID-19 Pandemic” and “Association of Receipt of Palliative Care Interventions With Health Care Use, Quality of Life, and Symptom Burden Among Adults With Chronic Noncancer Illness.”
- Dr. Christopher Muth and Dr. Joanne Lynn discuss various end-of-life trajectories and how current understandings of hospice care may or may not be best suited to fit each person’s needs and the needs of their families. A related podcast, “New Guidelines Aim to Expand Palliative Care Beyond Specialists,” covers how all physicians who treat seriously ill patients can integrate palliative care into their practices.
- This AMA STEPS Forward® toolkit describes four steps to help your patients convey their end-of-life decisions, provides answers to common questions about using templates for end-of-life discussions, and shares a sample letter end-of-life care for your practice to use.
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