Conference Agenda 2010

Pre-conference
Douglas C. Smith, M. Div., M.A., M.S., speaker, consultant, author, Madison, Wis.
Helping Our Clients and Ourselves Make Ethical Decisions
This workshop will examine in depth four complex case studies centered upon moral/ethical dilemmas. (Three of the case studies directly involved the course presenter in his work in hospice as a care provider and administrator.) Each of the course participants, through various sharing exercises, will be able to examine and discuss how he/she would respond in each of the dilemmas and hear how the other course participants would respond. In exploring the dilemmas, participants will come away from the course having formed their own specific guidelines (their own personal templates) to help themselves and their clients make ethical decisions—no matter what the moral/ethical dilemma.

(Cont'd)
Pre-conference
Douglas Smith

Keynote Session

Patient’s Preferences for Care at End of Life
Karin Kirchhoff, Ph.D., R.N., Professor (emerita), University of Wisconsin, School of Nursing, Madison, Wis.
Eliciting patient preferences and acting on them seldom occurs. Current federal legislation mandates screening for the presence of advance directives but this practice has many limitations and has not had the desired effect. An informed surrogate is a better option than paper documents, especially the living will. Results from a randomized clinical trial will be used to describe a preferred approach to assist patients to obtain the care they wish at end of life. Obstacles found to prevent patients from that care such as hospital policies will be described.

The Suicide Tourist (2007)
Mike Brennan, Ph.D., Director of the Center for Death Education and Bioethics, Department of Sociology/Archaeology, UW-La Crosse, La Crosse, Wis.
The controversy over a person's right to die at a time and place of their own choosing has become focused of the Swiss organization Dignitas. Dignitas, in Zurich Switzerland, is the only place where a person seeking an assisted suicide can legally be helped to die, no matter where they are from - or what their state of health is. For a year, Oscar-winning director John Zaritsky had exclusive access to Dignitas, and its clients. Through the intimate, compelling and controversial stories of four lives - and one death - The Suicide Tourist will take the audience on a journey they could only have imagined and won't forget.

Death for the Disenfranchised: addressing the imbalance between “best practices” and “gaps-in-care” for special-needs populations.
Laurel Burnett, M.A., NCC, Bereavement Services, Hospice of the Sandias, Albuquerque, N.M.   
At the crossroads of medical, legal and ethical issues for the dying, individuals who are members of disenfranchised populations face additional challenges for advanced-care planning.  Death is universal, yet advanced care planning and comfort-care for the dying is neither universally available nor consistent for special needs populations. What types of advocacy efforts are needed to enhance the care provided to disenfranchised populations?  An examination of end-of-life planning and care will be examined for: prison inmates, the homeless, individuals without medical insurance or financial means, individuals without Medicare coverage (or equitable coverage), indigents, and individuals who are residing in non-legal status.  The impact of the growth of for-profit hospice care on special-needs populations and trends of end-of-life care for disenfranchised populations will be examined.  

Brief Introduction to Biomedical Ethics
Dan Festa, B.A., M.L., D. Min., Chaplain, St. Francis Hospital, Charleston, W.Va.
As our technology develops, our healthcare dollars continue to shrink, and the cost of healthcare continues to escalate, it is increasingly more important for each of us to understand something about the principles which drive Bio-medical Ethics.  For many years technological advances in healthcare have increased at a far greater rate than our ability to formulate ethical precepts and guidelines for their use.  With discussion underway for some sort of nationalized healthcare plan, it is imperative for each of us to understand the magnitude of the challenges that face those making decisions about Who lives, Who dies.

Keynote Session

Herman van der Kloot Meijburg, D.Div., C.T., Director and founder of The Centre for Loss and Healing, Christchurch, Great Britain

"Until Death Do Us Part or the Batteries Expire; A Patient’s Right to the Deactivation of a Pacemaker or Defibrillator and the Physician’s Obligation to Honor This Decision."
Richard A. Zellner, J.D., M.A. Department of Bioethics, Case Western Reserve University School of Medicine, Cleveland, Ohio
An aging population and increased implantation of cardiovascular electronic devices is likely to
occur in the future. As a consequence it may be expected that patients or their families will request the deactivation of these devices, such as pacemakers and ICDs, and withdrawal of pacing therapy at the end of life or before then. Under American law, patients have the right to accept or refuse the medical interventions and treatment deemed appropriate for them. This right of autonomy entitles the patient to refuse the continuance of an already implanted cardiovascular electronic device. Although some physicians view these requests as controversial, under mainstream medical ethics honoring such patient decisions is neither euthanasia nor physician assisted suicide and is legal and ethical.

The Medicalization of Life Experiences: Is Bereavement Included?
Laurel Hilliker, M.A. in Sociology, Paralegal Certification by The American Bar Association, Michigan State University, East Lansing, Mich.
Common life events and developmental phases are being viewed, redefined, and transformed into what the medical profession deems as treatable disorders.  This paper examines the sociological concept of medicalization in general, and applies it to ‘bereavement’. The process of medicalization is defined and explored through common life experiences.  Next, the expanded power of the medical profession and the subsequent social control are outlined, applied and explored by naming key players in the process (i.e., survivor/s, scholars, professional organizations, practitioners, and the deceased person).  Included is the identification of relevant players/groups who (to some extent) oppose the medicalization of bereavement.  Lastly, the bereaved person’s rights to mental health care and the support that individuals may gain from being monitored by health professionals, as well as the many harms that are connected to this view, will be addressed.  Finally, recommendations for more helpful perspectives on the topic of bereavement care are addressed.

Preferences, Prejudices and Professionalism: Disguised and Clouded Ethical Issues and Opportunities in Working with Grieving GLBT Clients and their Families.
Harold Ivan Smith, D. Min., Ed.S., M.A., Self-employed thanatologist, Kansas City, Mo.
Ethics is a motivating factor as well as blind judgment and prejudice in responding to GLBT clients, cultures and communities. All clinicians, particularly heterosexual, face the question: How do I deal with individuals who are, seemingly, different from me? How do I receive their presenting concerns. It is easy to respond, “Oh, I have no problems with. . .” but polite “lite” prejudice is a reality that violates ethical standards and prevents thorough care. What opportunities come disguised as ethical challenges or opportunities in receiving the narratives of gays, lesbian, bisexuals, transgender grievers or the narratives of their family members?

Keynote Session

"Ethical Issues in the Cremation of the Dead"
Peter Jupp, M.A., MTh, Ph.D. FRSA, Director, The National Funerals College, Braddan House, Duddington, Stamford, England
The cremation of the dead, in the modern era, has posed a number of ethical issues for European societies. I will discuss four issues in my presentation. Cremation and government. Cremation gained an early reputation for notoriety when the French Revolutionaries proposed it as a means of the swift dispatch of leader of the ancient regime. This was further developed from the 1840s when medical proposals for cremation as a public health issue were taken up as essentially anti-Catholic measures by the Vatican and by Catholic states. Cremation was adopted as a weapon by certain secular groups in the later 1800s. Twentieth century examples of the political implications of cremation will be considered. The mode of disposal carries implications for the ways in the past is commemorated and valued. Cremation and religious doctrines about the afterlife. Christianity has always understood the significance of its beliefs in the afterlife as having implications for human life and behaviour. The traditional Christian expectation was for the post-mortem resurrection and judgment of the dead. Certain churches and denominations have at times regarded the concept of cremation as devaluing resurrection hopes and promoting competing beliefs in, for example, immortality or in extinction which make Christian funeral traditions and beliefs obsolete. The mode of disposal carries implications for concepts of the afterlife and their implications for personal and social ethical behaviour. Cremation and law. Burial had been so long the European tradition that it had been enshrined in many legal systems, both ecclesiastical and social. A first task of cremation’s advocates was therefore to persuade the courts to accept the legal validity of cremation as an alternative to burial. Certain European examples will be discussed to show the ways in which Governments have chosen to support or obstruct traditional religious traditions. The mode of disposal carries implications for how states regulate the disposal of their dead. Cremation: some contemporary ethical issues. Given the legal frameworks surrounding the disposal of the dead, certain recent issues have shed light upon such concerns as: the appropriate method for the disposal of foetal remains; environmental pollution; and the campaign by certain Hindu groups for open-air pyres.

Understanding Organ and Tissue Donation
Waneeta Everson, B.S.N., R.N., Bereavement and End-of-Life Coordinator, Gundersen Lutheran Medical Foundation, Inc. La Crosse, Wis., Jill Wilke, B.S.N., R.N., Organ and Tissue Donation Liaison, Gundersen Lutheran Medical Center, La Crosse, Wis.
Organ and tissue donation bridges living and dying. Most health professionals embrace organ donation conceptually as an opportunity to give life. Yet many do not understand the complexities of donation. This presentation will provide innovative strategies for creating hospital standards that support donation. Topics include withdrawal of mechanical support, intubation for stabilization and donation, and how to communicate with families to enhance their understanding and decision making. The presenters will also address common misunderstandings and barriers to a successful organ and tissue donation program.

'Death, how do I love thee, let me count the ways ...'
Michele Knight, Bachelor of Health Science (Research) degree in Aboriginal Health and Community Development, and a Master of Applied Science (Research) degree majoring in health career pathways for Aboriginal secondary school students, The University of Sydney, New South Wales, Australia
For many individuals the event of death in their lives presents as a challenge and a mystery.  It is a challenge because it confronts the individual with the anticipation and knowing that their assumptive world and existence within that world will irrevocably change.  It is a mystery because few individuals know definitively what occurs on the other side of death. In addition to the event of physical death, there is another death which requires attendance during embodied existence.  This death is the dying to all that is false, evil and misleading within oneself so remaining life can be devoted to the perfecting of the spirit. This reflective workshop and presentation invites participants to consider death from the definition of the Sufi dictum, Die before you die, and from the alternate perspective that death also corresponds to the major psychospiritual process of rebirth.  This dictum presents the alternate view that post-mortem happiness is not guaranteed and/or determined by procedures and techniques conducted at the time of death, the aim of which is to assist the soul safely cross the portal between this life and the next.  This dictum also challenges the notion that death is the sole domain of the dying as it suggests that death is also a consideration to be borne by the living. 

Principled principals prod principled principals
Richard B. Gilbert, Ph.D., D.Min, C.T., Executive Director, The World Pastoral Care Center / Bridge Builders, Elgin, Ill.
To engage in life is to engage in ethics. To engage in ethics is to engage in principles.  To engage in principles leads to engaging many principals.  Few things in life (and in death) are more crucial and complex than the principles around which people live and die.  These ethical principles are designed to guide us through life events, to discern some sense of meaning, and to fuel our decision making efforts. As principles are personal, they do not stand in isolation.  We exist within ourselves, but these life tests put us directly in the path of family, friends, providers of care, community, culture … God.  At times we need understanding and support from others we often prod the ethics of another than seem to conspire to challenge our principles and potentially comprise our options and our choices. The purpose of this seminar, using a multidimensional power point presentation, is to engage us in identifying points of ethical challenge, where other challenges come from, and find an understanding pathway that complements our efforts rather than crushing them. In the stormy waves of living and dying we will touch these sandbars that easily derail our voyage, how to recognize when we are stuck, and how we must do what we always must do, serve as guests on the journey of another.  Around each circumstance we will ask: 1) Is there a “right” choice?  2) Can we live by our values when there are so many values and opinions?  3) How do we stand with another person without compromising our own beliefs and values?  4) What helps us move away from win-win compromises, which seldom work, to sensitive, caring and nurturing collaboration?

Keynote Session

Truth in Dying:  What Does it Mean to "Tell the Truth" in Hospice Care?
Timothy W. Kirk, Ph.D., Assistant Professor of Philosophy, City University of New York-York College, New York, N.Y.
A core duty in heath care ethics is "truth-telling."  This is often taught or discussed in the context of informed consent, where telling the truth is equivalent to adequate disclosure.  In hospice care  however it is often not readily apparent just what the "truth" in any particular moment is, therein making what it means to "tell the truth" in hospice more complicated than it may seem at first blush.  This session uses a combination of lecture, discussion and case analysis to explore some traditional models of truth-telling, demonstrate their inadequacy in hospice care and propose a conceptual model of “truth” in hospice that centers on patients, heath care givers and family members working together to create meaning at the end of life.

Do Pre-loss Marital Relationship Appraisals Shape The Experience Of Conjugal Bereavement? Zooming In On Salient Factors For South African Widowed Spouses.
Nceba Somhlaba, Dr., Department of Psychology, University of Stellenbosch, Stellenbosch, Western Cape Province, Republic of South Africa
This study investigated the relationship between appraisals of pre-loss marital relationship and well-being following spousal bereavement. A total of 198 participants took part in the study. Pre-loss marital relationship appraisals were positively correlated with depression and problem-solving strategies and avoidant strategies. Significant negative associations were found between perceived social support and pre-loss marital relationship appraisals. Demographic variables, such as, participants’ sex, educational level and post-loss intimate relationship status determined overall perceptions of pre-loss marital relationship. Considering the socio-cultural context, the findings highlight the need for intervention programmes geared towards the reinforcement of supportive interpersonal relationships that compensate for the lost marital relationship.

Cancer: The Lived Experience of Patient and Families
Lorraine Gyauch, M.A., R.N., C.T., CGS, Nurse Educator, Lehigh Valley Health Network, Morgan Cancer Center, Allentown, Pa.
"Life is what happens while we're busy making plans". This statement has been called a forecast of one of life's sad stories, that of becoming ill or debilitated. One of the most dreaded illnesses is cancer.  Though traditionally the ravages of cancer have been associated almost exclusively with the patient, there is increasing emphasis on acknowledging the devastating effects of this diagnosis on the patient's family as well. Losses and life changes are numerous for the family unit and for individual family members; consequent grief and bereavement are strikingly painful and challenging. Exploring psychosocial interventions such as needs assessment, coping strategies, and community resources will be used to demonstrate how treatment outcomes can be optimized. This presenter has both professional and personal (family) caregiver experience.

The Dying Child:  Should they be told or not and other dilemmas at end of life
Nichole Schwerman, M.A., Bereavement Coordinator/CISM Coordinator, Children’s Hospital of Wisconsin, Family Services Department, Milwaukee, Wis.
When a child is dying there are many ethical dilemmas that surface.  One of the major dilemmas faced by the adults surrounding the dying child is if they should tell that child he or she is dying or if they should not say anything at all.  Many parents and professionals avoid this topic because they feel they are protecting the child.  Many believe that a child is too young to understand death, will be confused or frightened if told or will be overwhelmed with sadness.  This workshop will explore the issues surrounding a dying child, both from the child’s perspective and the adult’s perspective.

Forgiveness – Freedom from the Past
Amy Florian, MPS, F.T., Liturgy and bereavement consultant, Founder and CEO of Corgenius, Inc., Hoffman Estates, Ill.
For most of modern history, psychologists have relegated the study of forgiveness to the realm of religion.  It is only in relatively recent times that we have looked at the moral, ethical, and psychological processes involved in forgiveness and come to appreciate it as an invaluable part of both dying and grieving.  Come explore how and why we forgive, and the effects it has when we do.

Chronic and Traumatic Progressive Brain Injury How to Identify, Support and Address Ongoing Disenfranchised Grief Issue in Patient and Family
Teresa R. Hedges, M. Ed., Licensed Professional Counselor, ABD, Counseling with Capella University, Senior Partner with The Center for Personal Empowerment, LLC, Zanesville, Ohio 
Chronic and progressive traumatic brain injury is now at epidemic proportions. The prevalence in organized contact sports has brought nationwide attention to the phenomenon. The recent deployment of troops to war zones in which soldiers are exposed to detonations have also increased the numbers of closed head progressive traumatic brain injuries. There is no medical treatment for the injury but there are a variety of supports available to the injured party and their family in regards to identification of a suspected injury, support for the disabling conditions associated with it and support for the ongoing disenfranchised grief that accompanies the injury and impacts the victim and their families.   The nature of the injury, the symptoms that accompany it and the grief associated with it will be covered in this presentation.  The presenter will also address legal and ethical issues surrounding the research and treatment of chronic progressive traumatic brain injury.

Bereavement: An Anthropological Perspective
Margaret Souza, Ph.D., LCSW, Brooklyn, N.Y.
This presentation is the preliminary results of research that began by focusing on the relationship between the dying process and subsequent bereavement. Although palliative care practitioners indicate that families’ grief is lessened when a planned for "good death" occurs research reveals that the relationship between these two processes is more complicated. This research project has included dying persons, family members and embalmers. Intensive free flowing interviews were used to examine the impact of loss on mourners. In particular social factors that affect the grieving process will be analyzed.  Since psychology traditionally been the discipline that researched bereavement the social impact of loss has been largely ignored. This work builds upon the earlier work of English and Australian sociologists who conceptualized bereavement as a process of "continuing bonds."

Keynote Session

Get Off My Back! I’m Grieving as Fast as I can!
Susan Adams, Ph.D., LPC, NCC, ACS, Assistant Professor, Counseling & Development, Texas Woman's University, Denton, TX
Dying, death and the bereavement process that occurs afterward are certainly stressful times for everyone. However, when family members are not on the "same page" bitterness and conflict are often present to complicate, and perhaps create permanent damage, in the family system’s life. You will discover some key differences that fuel these painful interactions. In addition you will identify power issues that are at work and examine the role unresolved issues play in creating different meaning for family members. Through brief case examples, attendees will struggle with some of these issues and learn useful tools to address some of these.