Category: Death Education

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End-of-Life Care Should Be Universally Provided and Need-Based

By James Hamblin, MD

Dr. Ezekiel Emanuel, oncologist and chair of the Department of Bioethics at the National Institutes of Health (and, entirely incidentally, brother to Rahm and Ari Emanuel) has long been a champion of end-of-life care. He spoke today with Corby Kummer at The Atlantic’s Washington Ideas Forum, where he made succinct points about strategies for systematic improvements in our approach to caring for those nearest to death.

First, all doctors and nurses should be formally trained in end-of-life care and discussions. Walking into a room with a patient and their family to discuss a terminal diagnosis or prognosis is — especially at first — overwhelming, and impossible to just know how to do. Emanuel admits that facing those situations remains “scary,” even as a veteran clinician. He and most of his generation of physicians never received formal training in how to best discuss terminal illness with patients and offer palliative options, and some in training today still do not. Considering the large number of people who eventually face death, it is unreasonable that not all doctors and nurses are thoroughly prepared to help them as they do.

Emanuel also cited that more than 40 percent of hospitals in the U.S. do not offer access to palliative care, either within the hospital or after a patient has been discharged home. He believes that hospitals should be required to at least offer the option.

And finally, at present, eligibility for hospice care is predicated on having six months to live. Emanuel sees access to hospice as more aptly need-based, not calendar-based. Patients with symptoms warranting palliation, regardless of the estimated length of their remaining life, should be standardly offered care in that vein.

All of these changes would come as part of an ongoing shift in psychology and broader openness about death. Emanuel is quick to add the caveat that he is not talking about euthanasia or [shudder] … “death panels.” His inclination toward explicit clarification on that point stems from accusations that he and other leaders in the realm of end-of-life care have endured in the past. The fact that he still needs to make that clarification speaks to the persistent widespread misunderstanding surrounding quality end-of-life care. That mindset is and will remain the primary barrier to seeing these improvements out.

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Death Education

The term death education refers to a variety of educational activities and experiences related to death and embraces such core topics as meanings and attitudes toward death, processes of dying and bereavement, and care for people affected by death. Death education, also called education about death, dying, and bereavement, is based on the belief that death-denying, death-defying, and death-avoiding attitudes and practices in American culture can be transformed, and assumes that individuals and institutions will be better able to deal with death-related practices as a result of educational efforts.

There are two major reasons for providing death education. First, death education is critical for preparing professionals to advance the field and accomplish its purposes. Second, it provides the general public with basic knowledge and wisdom developed in the field. The overarching aims of death education are to promote the quality of life and living for oneself and others, and to assist in creating and maintaining the conditions to bring this about. This is accomplished through new or expanded knowledge and changes in attitudes and behavior.

Death education varies in specific goals, formats, duration, intensity, and characteristics of participants. It can be formal or informal. Formal death education can involve highly structured academic programs of study and clinical experience. It can be organized into courses, modules, or units taught independently or incorporated into larger curricular entities. It can be offered at the elementary, middle, and high school levels, in postsecondary education, as professional preparation, and as short-term seminars or workshops for continuing professional and public education. Informal death education occurs when occasions arising in the home, at school, and in other social settings are recognized and used as “teachable moments.” In the home, the birth of a sibling or the death of a pet may naturally lead to interactions that answer a child’s questions about death. At school, a student’s sudden death may trigger educational follow-up, in addition to crisis counseling.

Two distinct methodological approaches to structured death education are the didactic and the experiential. The didactic approach (involving, for example, lectures and audiovisual presentations) is meant to improve knowledge. The experiential approach is used to actively involve participants by evoking feelings and thereby permitting death-related attitudes to be modified. This approach includes personal sharing of experiences in group discussion, role-playing, and a variety of other simulation exercises, and requires an atmosphere of mutual trust. Most educators use a combination of the two approaches.

Death education can be traced back to the death awareness movement, which unofficially began with Herman Feifel’s book, The Meaning of Death (1959). He and other scholars noted that the subject of death had become “taboo” in the twentieth century and challenged individuals to acknowledge their personal mortality, suggesting that to do so is essential for a meaningful life. Feifel pioneered the scientific study of attitudes toward death and pointed to the multidisciplinary nature of the field. At about the same time other pioneers focused on more specific issues concerning dying persons and their care and the experience of grief.

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