“Education
for the End of Life”
All students will at some point face issues
related to their own and their loved ones' deaths. If one purpose of higher
education is to prepare students for personal challenges, teaching about death
is an appropriate part of the mission of colleges and universities. Graduates
need more than an ability to cope with death, however. As future community,
business, and professional leaders, students should be able to help others deal
with death, too.
Today's students share with the public an
inaccurate view of dying. Over 80 percent of deaths in the United States today
occur in institutional settings, increasingly in nursing homes
rather than hospitals. Most deaths thus
occur out of sight, especially for children and teenagers. We do see powerful
images of dying in the news media, but those deaths occur almost exclusively
because of trauma (car accidents, murders, wars, and terrorism) or after the
heroic efforts of emergency-room physicians. In fact, over 70 percent of deaths
occur among the elderly, most following chronic illness.
The
discord between perceptions and the reality of dying exacerbates the
difficulties our society faces in improving care at the end of life. Until the
public realizes that people who are terminally ill generally want to die at
home, we will continue to devote disproportionate amounts of money and effort
to providing care that few patients want. Teaching college students about death
is a good first step toward correcting public misconceptions.
The most common approach to education about
death is to create an elective course for students interested in studying
thanatology or in providing health care to dying patients. Such electives reach
very few students and often treat dying as a separate field of study, rather
than as a part of everyone's future.
Instead, colleges and universities should
require students to take a general course on dying or integrate material on
death into the curriculums of as many disciplines as possible -- or do both.
Any of those approaches would give far more students basic knowledge about
dying. They would also expand the small pool of students who pursue additional
studies in thanatology.
Virtually every undergraduate major and
postgraduate field of study could include information about death. For example,
a significant portion of our economy is devoted to end-of-life care and issues
related to death, ranging from estate planning and life insurance to funerals
and cemetery plots; economics and business students should learn about the
micro and macroeconomic implications of care for the dying. Students in
psychology, sociology, and anthropology should learn about the role of death in
individuals' lives and in society. Biologists and chemists should understand
the cellular and chemical changes that occur at the end of life.
Religious studies and philosophy should
include the meaning of death in their core curriculums. Historians should
discuss changing patterns of dying -- deaths caused by old age and illness, as
well as by wars and natural disasters. Literature and the arts often have death
as a theme; students in those fields should consider whether the images portrayed
reflect reality. Political scientists should understand how the fear of death
creates demands for resources devoted to detecting and preventing disease, and
how our allocation of resources affects how we deliver end-of-life care. For
example, the more hospitals a community has, the greater the percentage of
people dying in a hospital -- instead of at home.
General courses on death should include
material on what Americans know and think about death; how they want to die and
how they actually do die; and the effects our system of health care has on
dying -- like the allocation of medical resources and the ability of a patient
to refuse treatment.
Ideally, a general course would include both
students and faculty members from many disciplines and would provide credits
that could be used toward most undergraduate majors. Few professors would be
able to teach all the important aspects of death education, so general courses
should include guest lecturers from a variety of disciplines. For instance, a
professor from the school of nursing might serve as course director and recruit
epidemiologists, physicians, sociologists, anthropologists, lawyers,
philosophers, and historians to share teaching responsibilities.
If a university chooses to distribute core
content about death across introductory courses in a variety of disciplines,
faculty members in the disciplines should work together, to avoid major gaps in
coverage or excessive overlap among courses.
Different disciplines naturally would bring
a variety of pedagogical methods to courses on death. But research on death
education shows that lecturing alone is not enough; small-group discussions,
keeping a journal, or role-playing exercises would benefit students. Even more
helpful would be the use of real-life case studies, court decisions, and
medical charts, or longer narratives in books like Mitch Albom's Tuesdays With
Morrie (now also a film), Sherwin B. Nuland's How We Die, and F.
Gonzalez-Crussi's Notes of an Anatomist. Documentaries like Bill Moyers's On
Our Own Terms: Moyers on Dying and films like The Doctor and Longtime Companion
may also be good teaching tools.
Whenever possible, students should be
offered a chance to visit places like hospices or nursing homes, funeral
establishments, a medical examiner's office, and busy emergency rooms. Students
could visit just once, or repeatedly over a semester. Several medical schools
make arrangements for their students to discuss end-of-life issues with elderly
volunteers at intervals throughout the four-year program. Even interviewing
people over 75 years of age, regardless of their health, can be a valuable
experience for students investigating end-of-life issues. Almost all elderly
people have experienced the deaths of loved ones and friends. They think about
their own mortality in ways that will probably surprise students in their teens
and 20s.
A more intensive approach would be to have
students volunteer in hospice programs. Such programs often require each
volunteer to undergo 20 hours or more of training before visiting a patient
(usually at home) to socialize or to help family members with household chores.
Colleges and universities should develop relationships with nearby hospice
programs and should encourage students to volunteer, with or without academic
credit.
Other volunteer work would be possible
through churches, synagogues, or mosques, many of which have organized programs
for visiting the sick and homebound. In some communities, secular organizations
like Little Brothers-Friends of the Elderly connect younger people to the
elderly for special occasions like holiday parties or for continuing
relationships.
Many excellent resources are available to
help faculty members develop death-education courses. The End of Life Physician
Education Resource Center offers educational materials online
(http://www.eperc.org), many appropriate for students outside medicine. For
example, a module on writing a condolence letter applies to almost everyone.
Professional groups like the Association for Death Education and Counseling
(http://www.adec.org), the National Hospice Foundation
(http://www.hospiceinfo.org), the National Hospice and Palliative Care
Organization (http://www.nhpco.org), and the American Society for Bioethics and
Humanities
(http://www.asbh.org) also provide
educational materials and programs. Individual hospice programs are a source of
material and local expertise.
As educators, we claim to prepare our
students for life. We need to prepare them for death as well.
Edward R. Ratner and John Y. Song are
assistant professors of
medicine and faculty members in the Center
for Bioethics at
the University of Minnesota-Twin Cities.