Proposal:
If it has not happened to you or someone you know, then you have probably heard stories about it: the
unsuspected diagnosis of cancer or some other life-limiting disease, the frantic phone calls to find out
as much as possible about the disease and potential treatments, the desire to cram and complete
undone activities into an excruciatingly small time frame, the tears, the acceptance, the hospital, the
funeral, the loneliness. Another scenario with which you might be familiar is the unsuspected diagnosis
of cancer or some other life limiting disease, keeping the information a secret, the denial, the heroic
effort to not burden family members, letting the disease take control, giving into and giving up, and
allowing the unseen and unspoken elephant (death) in the room grow larger and larger. Both scenarios
lack one crucial component: an open dialogue about what is happening that includes interactive
participation from both patient and family members.
The fact is that the American society is renowned for planning. We plan for vacations, weddings,
births, graduations and other milestones of life. We plan our clothing, hairstyles, meals and social
calendars. We plan our education, our careers, our money, our volunteer work and our celebrations.
Conspicuously absent from this list, however, is the one thing that the vast majority of Americans don't
plan for; the event that we seem to think will, with the proper amount of ignoring, not happen. The one
thing that could, with just the smallest attention to detail be changed from a sorrowful, rigid and
frightening experience into one of warmth, celebration and comfort. The thing that we are perpetually
afraid of and don't want to deal with, which in turn creates more fear; the thing that is as sure as
tomorrow's sunset and that will touch every single person who ever draws breath. What are we so afraid
to confront? Death.
My thesis asserts that through education we, individually and as a collective body, can greatly reduce
the angst associated with death and break the fear/denial cycle that pervades our society. When we
are educated about our options and choose to live and chart the course of our final months and days,
instead of blindly reacting to the end of our bodily functions, we can design and direct a meaningful
legacy for those who care for us and who will be living when we no longer are. When we fully consider
all the facets and come to grips with the realities of our physical and spiritual states of being, our death
(or a loved one's) can become an encounter to remember for its positive aspects. The objective of this
final project is to provide information about death and dying issues, particularly the Hospice philosophy
and associated services, to those who would like to have the knowledge to direct the process, not be
directed by the process.
Throughout my MALS studies, I gravitated to topics that deal with psychology and sociology, those
topics concerned with why and how humans perceive, process and react to the world around them. The
Introduction to Liberal Studies course, in particular a book by John Stilgoe entitled Outside Lies Magic:
Regaining History and Awareness in Everyday Places, challenged me to contemplate the world with
respect to how much we take for granted, never notice or simply never stop to investigate. The class
discussions of the book encouraged me to ask questions and to observe, with wonder, the ways in
which we can participate in life and thereby write the script the way we want it to read. In addition,
several philosophy and religion courses have allowed me to explore different perspectives of the spiritual
side of life and death. The death of an in-law during this time had a profound effect on me and in part
served to help me affirm the conclusions I had been formulating during the years of her illness; death
does not have to accompanied by anxiety and fear if we educate ourselves and plan the journey to
death just as we plan for other events in our lives.
In December 2003, certain that death and dying would be the area of my final project, I initiated a
meeting with the volunteer director of Lower Cape Fear Hospice to discuss ways in which my final
project work could benefit their organization. At that time there were no specific long-range research
needs and we, therefore, decided to assess their needs closer to the semester in which the final project
would occur. We met twice in December 2004 to determine the current greatest area of need that would
have the highest level of impact. What emerged was the idea for a one-day community conference for
lay persons, which will deal with the various issues surrounding end of life concerns; a "Hopsice 101" of
sorts. In addition, I participated in a public radio interview about Hospice, which aired in early January
2005.
The methodology for this project will include researching why the American society views death with
such trepidation when other cultures embrace death as a natural event. The Hospice philosophy is
widely understood in other countries, yet only one-quarter of Americans are familiar with or opt to utilize
the services that Hospice offers. The roots of the Hospice "movement" will be another area of research.
In addition, personal interviews with individuals and families who have and have not used a local
Hospice will provide personal insight.
The primary outcome of this research will be the one-day community educational conference. This
conference, under the auspices of Lower Cape Fear Hospice and LifeCareCenter, will be open and free
to the public. The purpose of the conference is to provide non-medical and non-professional members of
the general public information about end of life issues, options and services that are available. The goal,
through education, is to foster and promote a change of perspective on death and dying.
The preliminary bibliography includes personal meetings with staff members of Lower Cape Fear
Hospice and LifeCareCenter and the following books, journals and associations:
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Berger, Badham, Kutscher, Berger, Perry and Beloff, ed. Perspectives on Dying: Cross-
Cultural and Multi-Disciplinary Views. Philadelphia : The Charles Press, 1989.
Clark, David, ed. The Sociology of Death . Oxford : Blackwell, 1993.
Corr, Charles A., Nabe, Clyde M., Corr, Donna M. Death and Dying: Life and Living .
USA : Thomson Wadsworth , 2003.
Haley, James, ed. Death and Dying: Opposing Viewpoints . San Diego : Greenhaven
Press, 2003.
Kubler-Ross, M.D., Elisabeth. On Death and Dying: What the Dying Have to Teach
Doctors, Nurses, Clergy and Their Own Families. . New York : Simon & Schuster,
1997.
Kuhl, M.D., David. What Dying People Want. New York : Public Affairs, 2002.
Munley, I.H.M., Anne. The Hospice Alternative: A New Context for Death and Dying .
New York : Basic Books, 1983.
Nuland, M.D., Sherwin B. How We Die: Reflections on Life's Final Chapter. New York :
Vintage Books, 1993.
Siebold, Cathy. The Hospice Movement: Easing Death's Pains . New York : Twayne,
1992.
Journal of the American Geriatrics Society
Journal of the American Medical Association
The American Association on Aging
Project Timeline :
December 2003 Approach Lower Cape Fear Hospice about MALS Final Project
December 2004 Meet with LCF Hospice to finalize collaboration for MALS
Final Project; tape interview for WHQR public radio
Week 1: 1/3-1/7 Complete written grant for conference funding
Week 2: 1/10-1/14 Research; submit grant proposal; radio interview airs
Week 3: 1/17-1/21 Meet with Hospice to plan Community Conference; research
Week 4: 1/24-1/28 Meet with Project Director; Research
Week 5: 1/31-2/6 Research and draft writing
Week 6: 2/7-2/11 Research and draft writing
Week 7: 2/14-18 Research and Draft writing
Week 8: 2/21-24 Research and Draft writing
Week 9: 2/28-3/4 Submit first draft to Director and Reader
Week 10: 3/7-3/11 Research and draft writing
Week 11: 3/14-3/18 Research and draft writing
Week 12: 3/21-3/25 Research and draft writing
Week 13: 3/28-4/1 Submit second draft to Director and Reader
Week 14: 4/4-4/8 Editing per suggestions of Director and Reader
Week 15: 4/11-4/15 Submit Final Paper
Week 16: 4/18-4/22 Prepare and Host Conference ( 4/23/05 )
Week 17: 4/25-4/29 Project Defense
Last Update: January 21, 2005
