This section provides a selection of projects that your instructor may ask you to do before class, during class, or after class on the topic of 'Quality of Life: At the End of Life'. These activities may be assigned to individuals or groups of students.

Even if these activities are not required, thinking about the issues they raise may better prepare you for class discussion, writing assignments, or an exam.

Please send comments, suggestions, or ideas for additional individual or group projects to choices@vt.edu.

• Background Activities
• Discussion Activities
• Review Activities

Download Complete Exercises as PDF File

Background Activities

Your Beliefs about Death & Dying
Community & Family Interviews — What Does 'Quality of Life' Mean?
Bioethics Tutorial
History: Case Studies in Health Care Resource Allocation

Your Beliefs about Death & Dying

Instructors — use the discussion board available through your course homepage at http://www.learn.vt.edu or contact choices@vt.edu to reserve NetForum space.

What do you believe about death and dying?
Can you locate the origin of your beliefs?

To begin, a self assessment —

First, go to the tools section of the PBS website 'On Our Own Terms: Moyers on Dying' (http://www.pbs.org/wnet/onourownterms/tools/index.html).

Then, click on the "Self-assessment of your beliefs about death & dying" on the right-hand side of the page under the heading 'Patient's Tools'. (Note: Adapted from an assessment tool from Michael Seago, Medical Innovations, 1994. Reprinted by permission from About.com.)

Third — what did you learn? Print out or electronically copy the questions, your answers, and the accompanying analysis. Be encouraged to add your own notations.

After completing the self-assessment, PARTICIPATE IN AN ONLINE DISCUSSION about your beliefs on death and dying. Incorporate both the results of this self assessment and your response to the following questions:

How can different narratives about death and dying help or hinder public discussions about quality of life at the end of life? How can we make individual and community decisions about this topic despite these different narratives?

Please treat your classmates with the same respect that you would show them within a classroom situation.

Community & Family Interviews — What Does 'Quality of Life' Mean?

What does your community and/or family think about 'Quality of Life at the End of Life'? How do these beliefs shape feelings about end-of-life decisions — for instance, high-tech life-saving measures, palliative care, "do not resuscitate" orders, physician-assisted suicide, or euthanasia? What decisions, if any, have been made?

First, read OR view selections from the interviews on quality of life at the end of life' conducted by the Choices and Challenges Project staff in 1995:
http://www.cddc.vt.edu/choices/modules/end-of-life_video.htm#interview

Next, conduct at least five conversations (informal interviews) with members of your community and/or family about 'Quality of Life at the End of Life', using the questions above as your starting point.

Who to interview? Be sure to include at least one person from each of these three age categories: 1) under age 25; 2) between ages 25 and 50; and 3) over age 50. Interviews can occur face-to-face, by phone, or online. Take notes!

Finally, use these interviews to craft a 750-1000 word story suitable for a local paper discussing what you have found out about your community and/or family — what decisions have we made about quality of life at the end of life? Where do we agree? Where do we differ? Can you, as the analyst and reporter, draw any large conclusions?

Bioethics Tutorial

First read:

Thinking Ethically: A Framework for Moral Decision Making
Developed by Manuel Velasquez, Claire Andre, Thomas Shanks, S.J., and Michael J. Meyer, Markkula Center for Applied Ethics at Santa Clara University http://www.scu.edu/SCU/Centers/Ethics/practicing/decision/thinking.html

This reading describes five approaches to ethical decision-making: utilitarian; rights-based (also called deontological); fairness or justice; common good; or virtue. A sixth approach, dominant in the field of bioethics, is called principlism or principle-based bioethics. Read more about this approach in a primer developed by Thomas R. McCormick, faculty at the University of Washington School of Medicine:

Principles of Bioethics
http://eduserv.hscer.washington.edu/bioethics/tools/princpl.html

Next, choose one of the scenarios below, and evaluate the situation using each of the six ethical decision-making frameworks:

1. The father of a 30 year old man died of Huntington's Disease at age 38. Huntington's Disease is a hereditary illness causes by a single genetic error (see http://www.hdsa.org/ and http://www.hdac.org/hdfaq/faq.php) that results in neurodegeneration and early death. The 30 year old man refuses to be tested for the defect before conceiving children with his wife; who does not know about the death of the man's father, or the possibility that her husband also carries the gene for Huntington's Disease. Each child of a parent with Huntington's Disease stands a 50% chance of inheriting the disease. Should a medical professional notify the man's wife, force the man to be tested, or respect the man's right to privacy and autonomy?
   
   
2. An infectious agent that looks like smallpox is released in a rural town with limited medial expertise and equipment. Federal workers want to quarantine the area and refuse to allow medical equipment or professionals into the town, or any town residents to leave. Medical groups want to access the town, to save as many people as possible. People who do not yet have smallpox want to leave. What should be done and who should decide?
   
   
3. Fluoridation — the practice of adding fluoride to the public water supply — has been an accepted practice in the United States for over 50 years. Fluoride is believed by many (including the American Dental Association) to significantly reduce tooth decay in the population. (See http://www.ada.org/public/topics/fluoride/fluoride.html) However, opponents point to an increase in fluoride overdose resulting in the poisoning of young children, crippling skeletal fluorosis in the population at large, and detrimental environmental impacts. Opponents are particularly concerned by what they see as a lack of individual choice. (See http://www.fluoridation.com/) Should communities continue to fluoridate their water?
   
   
4. A 25 year old woman tests positive for a highly contagious sexually transmitted disease for which there is currently no cure — however, early treatment significantly decreases health risk and increases quality of life. The woman has had over 20 sexual partners within the last three years, including a number of persons with whom she has practiced unsafe sex. The woman indicates that she does not plan to contact any of her former partners, nor will she provide her physician or the health department with their names, to urge them to be tested. Should the woman be legally required to provide the names of all her partners?

For an excellent overview of ethical issues in terminal health care, see a series of articles originally published in The Senior Reporter in the spring and summer of 1992, and now available at: http://www.cp.duluth.mn.us/%7Eennyman/ethics.html.

Continue your exploration of these issues with the exercise below, End of Life Decision-Making in a Hospital Ethics Committee.

History: Case Studies in Health Care Resource Allocation

Write a book review — choose one of the following books or a text selected or approved by your instructor. Length: 750-1000 words

David Rothman, Beginnings Count: The Technological Imperative in American Health Care (Oxford University Press: 1997).

David Rothman, Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decision Making (Basic Books: 1991).

Lisa Belkin, First Do No Harm (Fawcett Books: 1994).

How to Write a Critical Book Review (pdf)

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Discussion Activities

Legal Debates — Physician Assisted Suicide: Oregon vs. Ashcroft
Construct a Living Will/Advance Directive
End of Life Decision-Making in a Hospital Ethics Committee

Legal Debates — Physician Assisted Suicide: Oregon vs. Ashcroft

Who should get to decide about physician assisted suicide?

In 1997, as a result of a voter referendum, Oregon became the first state in the nation to allow terminally ill adults to obtain life-ending drugs from doctors. In 2001, US Attorney General John Ashcroft announced that any physician prescribing lethal medication would lose their federal licenses to dispense controlled substances. In April 2002, U.S. District Judge Robert Jones ruled in favor of the state of Oregon and 9 terminally-ill patients that Ashcroft's announcement overstepped the abilities of the federal government. Ashcroft has asked the San Francisco appeals court to overrule Jones. A hearing date has not yet been set, as of November 2002.

For more information, see: "Needless pain feared by doctors: Rebuttal to Ashcroft on assisted suicide," San Francisco Chronicle, November 14, 2002. http://www.sfgate.com/cgi-bin/article.cgi?file=/chronicle/archive/2002/11/14/MN94092.DTL or PDF.

Option 1: You work for a Sunday Morning News Show. The topic for an upcoming program is physician assisted suicide, specifically the continuing court battle between the state of Oregon and John Ashcroft. You are responsible for developing a list of 6 potential program guests, which can include both relevant persons and/or groups. Each recommendation must include a 1-2 page dossier briefing the host on each person or group.

As well, you have been asked to produce a 3-4 page overview of the debate for the host, who is not familiar with the issue. Additionally, identify and briefly describe (1 paragraph each) 5 sources that the host must review before conducting the interviews.

Option 2: You and your group members are participants on a Sunday Morning News Show — One of you is the host, and the others are guests. The topic for next week's program is physician assisted suicide, specifically the continuing court battle between the state of Oregon and John Ashcroft.

First, as a group, you must identify which persons and/or groups should be represented on the program. Each participant should then choose one of the 'guests' for a role-play. Individually, each of you must then research your chosen character. Finally, you and your group can either a) produce a script of the 15-20 minute interview segment, or b) perform the 15-20 minute interview segment in front of the rest of your class, or c) both.

Construct a Living Will/Advance Directive

Advance directives are documents signed by a competent person giving direction to health care providers about treatment choices in certain circumstances, such as end-of-life care. Living wills are a type of advance directive.

In this exercise:

Option 1: Construct your own living will/advance directive.

Option 2: You, or you and a partner, should develop a half hour long teaching program for use by the American Association of Retired People (AARP) about living wills and advance directives. This program should include a play or skit discussing the decision-making process about living wills and advance directives.

You may wish to begin here:

10 Legal Myths About Advance Medical Directives
Charles P. Sabatino, J.D, Commission on Legal Problems of the Elderly, American Bar Association
http://www.abanet.org/elderly/myths.html

Advance Directives
U.S. Department of Health and Human Services
http://www.hcfa.gov/pubforms/advdir.htm

Advance Directives and Do Not Resuscitate Orders
American Academy of Family Physicians
http://www.familydoctor.org/handouts/003.html

Consumer's Tool Kit for Health Care Advance Planning
Commission on Legal Problems of the Elderly, American Bar Association
http://www.abanet.org/elderly/toolkit/home.html

Health Care Advance Directives Form Sources
http://www.abanet.org/elderly/sources.html

Legal Concerns: Advance Directives/Living Wills
http://www.med.umich.edu/1libr/topics/legal06.htm

The Living Will and Values History Project
http://www.euthanasia.org/lwvh.html

Living Wills Bibliography
http://www.keln.org/bibs/ubel.html

The Living Will Center
http://www.rights.org/deathnet/LWC.html

Partnership for Caring: America's Voices for the Dying
http://www.partnershipforcaring.org/HomePage/

Shape Your Health Care Future with Health Care Advance Directives (1995)
American Association of Retired Persons, ABA Commission on Legal Problems of the Elderly, and American Medical Association
http://www.ama-assn.org/public/booklets/livgwill.htm

U.S. Living Will Registry
http://www.uslivingwillregistry.com/

Will to Live Project
http://www.nrlc.org/euthanasia/willtolive/index.html

End of Life Decision-Making in a Hospital Ethics Committee

Your group has been convened by a hospital administrator and physician to make decisions about three different patients currently under care at the town hospital. You must decide what treatment options should be pursued for each of these patients. The consensus your group reaches must address ethical concerns at the end of life, as well as specific medical details. Your decisions should be reported to the convening administrator and physician in the form of 3 2-page final reports.

Your group includes:

2 Physicans (choose speciality)
1 Geriatric Specialist (MD)
1 Nurse
1 Lawyer
1 Religious Representative (choose faith)
1 Medical Ethicist
1 Lay Person

Review this excellent overview of ethical issues in terminal health care, orginally published as a series of articles in The Senior Reporter in the spring and summer of 1992, and now available at: http://www.cp.duluth.mn.us/%7Eennyman/ethics.html.

Medical Cases — Under Construction

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Review Activities

Physician Assisted Suicide Op-Ed
Constructing Exam Questions on 'Quality of Life: At the End of Life'
Film as a Lens to Examine Our Hopes & Fears about Health Care

Physician Assisted Suicide Op-Ed

In these papers you should give a brief introduction explaining the controversy over physician assisted suicide or euthanasia, identify the key issues, and offer your own position on what ought (or ought not) be done, and then explain why.

To make the most convincing case, it is necessary not only to give the arguments in support of your own position but also to identify what the opposing arguments are (doing this fairly, of course) and to show why your arguments are stronger or more reasonable.

Recognizing areas of uncertainty and offering suggestions for what new policies or laws might be useful are also appropriate.

Keep in mind that op-ed articles are written for a general audience so you must keep your op-ed paper simple and direct. You can be dramatic, poetic, passionate. But avoid technical language. Keep sentences short and clear. And it helps to end your op-ed paper with a brief, snappy paragraph that sums up your view.

Each paper should be no longer than 750 words, double-spaced with pages numbered. You must give credit to any sources that you use including the Internet. In the case-study paper you can do this with footnotes. However, op-ed articles do not use footnotes. So here, you must work the credit into the text. For example, you could write something like: "According to Jill Hudson in her November 1999 article in Discover magazine…"

Constructing Exam Questions on 'Quality of Life: At the End of Life'

You, or you and your partner must develop an exam to test your classmates' understanding of the issues involved in this module.

The exam should be worth 50 points, and include short answer, multiple choice, and at least one essay question, among other testing mechanisms.

Also develop an 'answer sheet' for each question — provide information regarding: What types of information must be included for a 'complete' answer? How many examples should be present? How much is each question worth? How should your essay question be weighted?

Please be sure to include grammar and writing style as part of your grading calculation.

Film as a Lens to Examine Our Hopes & Fears about Health Care

View the film John Q. (2002) or Lorenzo's Oil (1993).

Compare the issues the film raises concerning our hopes and fears about health care and health care resource allocation.

In what way does the film highlight concerns about health care, health care resource allocation, and qualify of life at the end of life? In what way is the film useful or not useful as part of the discussion?

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Choices and Challenges Project
Center for Interdisciplinary Studies
Virgina Tech, Mail Code: 0227
Blacksburg, Virginia 24061
Phone: 540 231-6476 Fax: 540 231-7013
Email: choices@vt.edu