The 2017 ASBHconference in October 2017 includes over 400 workshops, panels, and
papers in bioethics and the health humanities. Here are ones that pertain
to end-of-life issues.
THURSDAY, OCTOBER 19
THU 1:30 pm: End-of-Life Care and Decision-Making in the ICU - Limited
English Proficiency as a Predictor of Disparities (Amelia Barwise)
Importance: Navigating choices in predominantly English-speaking care settings
can present practical and ethical challenges for patients with limited English
proficiency (LEP). Decision-making in the ICU is especially difficult and may
be associated with disparities in health care utilization and outcomes in critical
care.
Objective: To determine if code status, advance directives, decisions to limit
life support, and end-of-life decision-making were different for ICU patients
with LEP compared to English-proficient patients.
Methods: Retrospective cohort study of adult ICU patients from
5/31/2011-6/1/2014. 779 (2.8%) of our cohort of 27,523 had LEP.
Results: When adjusted for severity of illness, age, sex, education, and
insurance status, patients with LEP were less likely to change their code
status from full code to do not resuscitate (DNR) during ICU admission (OR,
0.62; 95% CI, 0.46-0.82; p
Conclusion: Patients with LEP had significant differences and disparities in
end-of-life decision-making. Interventions to facilitate informed
decision-making for those with LEP is a crucial component of care for this
group.
THU 1:30 pm: �But She�ll Die if You Don�t!�: Understanding and
Communicating Risks at the End of Life (Janet Malek)
Clinicians sometimes decline to offer interventions even if their refusal will
result in an earlier death for their patients. For example, a nephrologist may
decide against initiating hemodialysis despite a patient�s rising creatinine
levels if death is expected within weeks even with dialysis. Although
clinicians can describe their reasons for not offering an intervention (often
related to overall prognosis, suffering, and mental status) toward the end of
life, their reasoning has not been explored in detail or described in a nuanced
way. Anecdotal experience as well as published scholarship suggests that
clinicians decline treatment if �the risks outweigh the benefits.� This facile
explanation does not adequately address concerns of a family member who wants
to give their loved one every possible chance, arguing, �But she�ll die if you
don�t! What do we have to lose?�
In an attempt to bridge this impasse often encountered by clinical ethics
consultants and critical care physicians, we conducted interviews with
physicians (intensivists, oncologists, surgeons, and nephrologists) about
situations in which they refused to offer CPR, chemotherapy, surgery, and
dialysis. Our goal was to understand physicians� perceptions of risks and
benefits at the end of life and how they communicated those risks and benefits
to patients and their families. This presentation describes clinicians� reasons
for declining to offer intervention when the end of life is near and offer
suggestions for ways to describe this decision effectively to patients�
families.
THU 1:30 pm: Social Justice, Personal Choice and Medical Aid in Dying:
Reflections on Canada�s Shifting Priorities on End-of-Life Care (Daryl Pullman)
In February of 2015 the Supreme Court of Canada declared unconstitutional
section 241 of Canada�s Criminal Code that prohibited either assisted suicide
and called on the federal government to introduce new legislation to permit
medical aid in dying (MAiD). This new legislation was approved by Parliament in
June of 2016.
Since then provincial governments, professional regulatory bodies and regional
health authorities across the country have been scrambling to adjust internal
policies and procedures to ensure compliance with the law, even as requests for
this new �medical service� have been coming in. At the time of this writing
more than 800 individuals from across the country are reported to have received
MAiD.
Developing policies, and procedures and responding to
requests has required a substantial investment of resources in an already over
taxed health care system. Put otherwise, the relatively small percentage of
terminally ill patients who request MAiD are consuming an inordinate amount of
health care resources to receive a �medical service� to which the Supreme Court
has declared they are entitled. In this paper I discuss how this new law is
unjustly shifting Canada�s priorities with regard to end-of-life care including
an unjust allocation of resources. Indeed, given the manner in which this
service is being introduced and how the criteria for it are being expanded, it
could be argued that Canada is in danger of medicalizing suicide.
THU 2:45 pm: Robbed of Life: A Thomistic Position on Terminal Sedation
(Jessica Adkins)
Terminal sedation, broadly understood, is the act of administering high doses
of sedative medicine to a terminally ill patient with the intent of relieving
suffering. Death must never be intended, but a hastened death can be
foreseeable. Many arguments in support of terminal sedation rely on Aquinas�
Doctrine of Double Effect (DDE). Such arguments say: the act of relieving
suffering is not an intrinsically morally evil action; death is not the cause
of the relief of suffering but rather the use of medication; and, foreseeable
possible death is an unintended consequence of terminal sedation, but it is a
consequence tolerated because the relief of suffering is of equal or greater
value to offset that negative consequence of a hastened death. The DDE argument
appears satisfying since it not only justifies terminal sedation but it also
differentiates the act from euthanasia and physician-assisted death.However, I
am not convinced applying the DDE is enough to show the moral permissibility of
terminal sedation if one actually wants to take a Thomistic approach to the
issue. The task of this paper is to approach terminal sedation from a Thomistic
position but to avoid the typical reliance on the DDE. Instead, I wish to focus
on Aquinas� thoughts on justice, robbery, due care, and justice. I conclude
that a Thomistic position would not find acts of terminal sedation as morally
permissible, and that merely defending terminal sedation with DDE argument is
not enough to offer a robust Thomistic argument on the matter.
THU 2:45 pm: Do Nurse Practitioners Have a Role in Physician Assisted Death?
(Liz Stokes)
As the debate on assisted death continues, there are many physicians who refuse
to participate, leaving the opportunity for participation by other members of
the health care team, such as nurse practitioners. This presentation will
discuss the historical role of nurses around the world in assisted death and
the challenges that nurses face in caring for patients at the end of life. The
discussion will be cased-based and identify the ethical and legal challenges
that nurses may face with patients who have requested assistance in dying.
Several nursing organizations and several professional Codes of Ethics
expressly prohibit a nurse�s involvement in hastening a patient�s death because
it is against the ethical traditions and goals of the profession, and its
covenant with society. The International Council for Nurses is silent on the
specific role of the nurse in assisted death, but advocates for a palliative
care approach aimed to reduce suffering for patients at the end of life.
Canada is the first country in the world to allow nurse practitioners, rather
than physicians, to administer lethal medication in assisted death. There will
be an interactive discussion of the role of the nurse in assisted death and the
ramifications of this significant shift in policy. The discussion will conclude
with practical methods for nurses and nurse practitioners to utilize in caring
for patients who have requested assisted death, including refusal,
conscientious objection and withdrawal of care.
THU 2:45 pm: Medical Aid in Dying: Who Should Be Eligible (Catherine
Rodrigue)
Since 2015, legislation allows medical aid in dying (MAD) in Quebec, Canada.
The eligibility criteria include age of majority, end-of-life prognosis,
suffering from a serious, incurable illness at an advanced state of
irreversible decline, and experiencing constant and unbearable physical or
psychological suffering. In 2016, a federal bill established similar criteria
to those in effect in Quebec, however there are some important distinctions.
For example, the federal criteria refer to being at a point where natural death
has become reasonably foreseeable rather than at end-of-life. The definition of
eligible medical conditions is also more restrictive in Quebec. Thus many are
excluded in accordance with the provincial criteria, despite the broader scope
set federally. For example, those suffering from degenerative diseases without
a definite end-of-life prognosis, and those with Alzheimer-type dementia making
an advanced request for MAD applicable when advanced stage is reached (can no
longer consent) are not currently eligible. The media have recently reported on
two such stories: one was killed by her husband wanting to abide by his wife�s
wishes, and the other traveled to Switzerland to access euthanasia. The provincial
government has now shown a willingness to open up discussions on eligibility to
MAD. Broadening the criteria would support the autonomy and respect wishes of a
larger number of people. However, it will also raise challenges considering the
conflicting values of many, including healthcare professionals. This
presentation aims to present the legal framework for MAD, and then to analyze
the ethical issues related to broadening the criteria.
THU 2:45 pm: Pathways to Convergence: Sharing a Process that Aimed to Examine
the Diverse Perspectives of Catholics on Advance Care Planning and Palliative
Care in the United States (Robert Barnet, John Carney, Matthew
Pjecha, Carol Taylor)
Pew Charitable Trusts recently funded a project to examine views among Catholics
in the U.S. regarding end-of-life, palliative care and advance care planning.
Center for Practical Bioethics (CPB) served as coordinator for the project. A
six-member steering group representing ecclesial, Catholic Health, and ethical
interests, along with CPB (a secular organization) invited three groups of
eight Catholics from different disciplines and perspectives to capture
conservative and progressive themes within American society and among practice
settings. Roles and responsibilities within those realms were prominently
featured in deliberations with goal of clarifying areas of divergence,
convergence and possible paths forward. The groups examined: - Social
responsibility derived from tradition (how the Church presents itself and
speaks in the public square and what informs this presence) - Covenant and
contract (roles of free and informed consent in advance care planning and
decision-making between patients and providers) - Shared decision making
(Church teaching that informs specific decisions faced in goals of care
conversations and interdisciplinary care planning for palliative care
patients)Identified as Pathways to Convergence the groups aspired to identify
common values and principles and report on the results following a convening.
Presenters will explore how ethicists can use the processes, methods and
findings of this group when workings with patients for whom faith tradition may
play an important role and among providers, and others who share different
perspectives on end of life to facilitate optimal advance care planning and
palliative care.
FRIDAY, OCTOBER 20
FRI 8:00 am: Parents� Faith-Based
Demands for Potentially Inappropriate Treatment and the Principle of Liberal
Neutrality (Laura Guidry-Grimes)
When faced with the impending death of
a child, parents will often exhibit wishful thinking and make demands for
potentially inappropriate treatment. Behind these well-intentioned demands can
be different forms of hope -- such as hope that he child will beat the odds,
that a miracle will occur, or that divine forces will reward the parents' fight
for life. It is widely acknowledged in the United States that physicians are
not ethically obligated to provide futile or inappropriate treatment. But even
if they are not obligated to provide this treatment, is it ever ethically
permissible to provide it? Is it ever ethically prohibited? These ethical
nuances are explored in two clinical cases, one from neonatology and one from
pediatrics. The cases share many feature, but I argue that they call for
different recommendations from the clinical ethics consultant. In one case, the
mother's worldview was at stake, and she argued that she and her infant would
suffer severe metaphysical harm if the medical team withdrew life-sustaining
treatments. In the other case, the father's beliefs were closer to
superstitions and unrealistic optimism, and he argued that the medical tests
and physicians were all in error about his son's diagnosis and prognosis. I
show that the principle of liberal neutrality, a concept from political
philosophy, is applicable in clinical contexts and helpful for distinguishing
these cases. I offer a typology of faith-based requests, showing how these
requests can vary in their moral pull when the principle of liberal neutrality
is applied
FRI 8:00 am: Community Neonatal Palliative Care: Preparing for Death or
Helping to Support Life? (Paul Mann)
Palliative care specialists are
increasingly called upon in neonatal intensive care units to optimize clinical
outcomes for infants with congenital malformations, genetic anomalies and/or
born extremely premature. In the inpatient setting, palliative care consultants
enhance communication with families, providing prognostic and psychosocial
support while alleviating suffering through advanced management approaches.
Additionally, for infants who have achieved adequate clinical stability or
whose families have elected for comfort care, palliative care is instrumental
in coordinating transitions to home.Once at home, however, many families are
confronted with the ambiguity of an uncertain clinical trajectory. There are
few standardized approaches for ongoing care of medically complex infants, and
time and experience limitations may preclude primary care providers from
providing optimal care. Parents who continue conventional medical therapies
must skillfully navigate a labyrinth of subspecialist visits and can find
difficulties determining who has ultimate ownership for the medications and
technologies that their infant is dependent upon. Other parents who were
counseled that death was imminent may have no formal plan for follow-up with
any medical provider. Some of those parents eventually elect to transition back
to conventional medical interventions as the infant lives longer or does better
than anticipated.In order to enhance outcomes for such medically complex
infants and meet the needs of their families, a new transitional care approach
is needed. This paper proposes a medical home led by palliative care
specialists and centered on coordinating multidisciplinary care to support the
ongoing life, and quality of life, of the infant and family.
FRI 8:00 am: Neonatal End-of-Life Decision-Making: Centering Bioethics
Within an Anthropological Framework (Manya Hendriks)
In the past decades, a shared approach
has become the ideal for neonatal end-of-life decision-making. We conducted an
empirical study to explore involvement of parents of extreme preterm infants in
decision-making through participant observation and twenty in-depth interviews
in a level III NICU in Switzerland. In the face of the ideal of shared
decision-making, our study shows that parents were not involved in the decision
to continue or withdraw intensive care treatment. Despite not being involved,
perhaps surprisingly, parents were satisfied with the decision-making process.
This is consistent with other studies in neonatology, advanced cancer care and
intensive care units, where the ideal of shared decision-making is not always
portrayed in the empirical reality. The question in this presentation focuses
on how researchers should proceed when apparent bioethical ideals contradict
with anthropological observations. On the one hand, these discrepancies could
be contingent on the context. Physicians could steer decisions towards
treatment without outlining or explaining alternatives. Clearly, then, lots of
improvements are still to be gained in establishing a shared decision-making
approach. On the other hand, some bioethicists have questioned whether the
mainstream bioethical approach to autonomy might lack the nuance of a complex
empirical reality in which patients or surrogate decision-makers cannot and do
not want to take part in the decision-making approach. It is part of our
responsibility as bioethicists to critically reflect on and bridge normative
ideals with diverging empirical realities.
FRI 10:45 am: Should the Law Permit Physician-Assisted Death for Dementia?
(Rebecca Dresser)
As more of us live into our later years, more of us become susceptible to
Alzheimer�s disease and other age-related dementias. Many people fear dementia,
and some argue that physician-assisted death should be available to those
seeking to avoid the indignity of life with dementia. The prospect of
legalizing assisted death for potential or actual dementia patients raises
distinct issues. In this presentation, I will consider whether U.S. law should
permit physician-assisted death for: (1) at-risk individuals seeking to avoid a
possible future with dementia; (2) individuals with mild or moderate dementia;
and (3) individuals who make advance directives requesting assisted death if
they develop dementia. I will describe concerns related to predictive
uncertainties, decision-making capacity, changes in personal interests, and
activation criteria for advance euthanasia directives. I will also examine the
practical effects of laws permitting dementia-based physician-assisted death in
the Netherlands and Belgium, as well as the ethical implications of those laws.
FRI 10:45 am: 'Never Tell Me the Odds!': Intellectual Virtues and Vices in
Surrogate Decision Making (Alan Murphy)
In what respects (if any) do surrogate decision-makers wrong patients by
insisting upon courses of action (1) that depart from medical recommendations,
(2) that thereby expose patients to avoidable risks, and (3) that the patients
might not have chosen themselves? While both the substituted judgment standard
and the best interests standard of surrogate decision-making regard such
behavior as aberrant on its face, I argue that neither standard alone nor both
together can account in all instances for the standards� shared intuition that
there is something wrong about knowingly exposing patients to avoidable risks
that the patients might not have chosen themselves. I suggest that the
incompleteness of the account offered by these standards is due to their close
focus on outcomes and to risk�s inherently uncertain contribution to outcomes.
Albeit in different ways, both the substituted judgment standard and the best
interests standard focus on outcomes: the substituted judgment standard focuses
on securing a decisional outcome identical to what the patient would have
sought, while the best interests standard focuses on the best available medical
outcome. Neglected are the intellectual dispositions and habits of the
surrogate, what under ethical analysis we might call the surrogate�s
intellectual virtues and vices. I propose a virtue-based supplement to the
substituted judgment standard and best interests standard for surrogate
decision-makers.
FRI 10:45 am: Legal Update 2017: Top 10 Legal Developments in Bioethics
(Amy Campbell, Arthur Derse, Paul Lombardo, Thaddeus Pope)
Each year brings with it important
legal developments related to bioethics. This panel will discuss the latest
legal trends of significance for ASBH members. This annual panel has been a
well-attended and popular session. This year�s panel will be interdisciplinary
and diverse both in terms of topics covered under the law theme, and in terms
of the speakers� geographic regions, areas of expertise, and institutional
affiliations. In keeping with the conference theme, this year, the panelists
will address legal developments in areas with a range of bioethical concern,
with complex and strongly held perspectives from left, right, and center with a
focus on how bioethics has fared in courts, legislatures and administrative
agencies through their decisions and actions in bioethics-related law. Relevant
recent legal developments will include those affecting individuals, health
professionals, and populations at the state, federal, and international level.
Panelists will cover thematic areas of interest to the diverse ASBH audience
and within their expertise, representing a breadth of key areas in law and
bioethics. Major legal developments addressed include: - reproduction, assisted
reproductive technologies, and issues concerning vulnerable populations, e.g.,
individuals with disabilities (Panelist 1) - brain death (including unilateral
withdrawal of somatic support), futility, and informed consent/unwanted medical
treatment (Panelist 2) - aid-in-dying/physician-assisted suicide, and
withdrawal and withholding of life-sustaining treatment (including DNR and
POLST orders) (Panelist 3) - public health law and government regulation of
behavior (Moderator). All ASBH attendees are invited to discuss these emerging
legal trends.
FRI 10:45 am: Your Recovery Is Not MY Recovery: Testing the Shared
Decision-Making Model (Olubukunola Dwyer)
In recent years, shared decision making has become the standard for medical
decision making, with the goal of making treatment decisions that are medically
appropriate and consistent with the patient�s values, goals, and preferences.
Another perspective recognizes that when medically appropriate treatment
options that have the potential to detrimentally affect a patient�s quality of
life are being considered, the patient�s preferences are more heavily
considered. Following the shared decision making model becomes rather difficult
when medical providers are confronted with the refusal of beneficial treatment
(e.g., refusal of intubation while treating pneumonia and chronic obstructive
pulmonary disease).
Ethicists usually address the value laden conflicts that arise when families
request possibly non-beneficial treatment, but what should happen when the
unusual case arises of a family setting limitations for beneficial treatment
before the medical providers? In our case, a family with complex dynamics
requested limitations of treatment (removal of an external ventricular drain)
that the team viewed as beneficial. The family�s request was informed by the
patient�s previously expressed views of not living with a disability. Their
goal was to spare the patient from living with a quality of life he would find
unacceptable because it would likely involve some level of disability.
Ultimately, our team decided to honor the family's request. In this
presentation, by closely examining the shared decision making model, we hope to
clarify when it is ethically acceptable for the values of the patient to
outweigh what is medically beneficial to him.
Format
FRI 10:45 am: Dying in America: Ethics in the Middle? (Richard Butin, William
Colby)
Dying in America: Ethics in the Middle? Right to Life Right to Die The right of
self-determination, the right to refuse treatments, even the 'right to try' are
all rather modern constructs created by fantastic advances in technology and
information dissemination.Though seemingly disparate positions, the proponents
of each feel a strong moral obligation to preserve and promulgate their view to
ensure societal choice. The debate surrounds the finality of life and death
which creates urgency. It often involves surrogate decision makers which
heightens the emotion increases the complexity.Expressed preferences regarding
end of life decisions both inside and outside of medical facilities are gaining
traction but have their limitations and are not universally recognized or
utilized.The clinical ethics principles of autonomy, both of the patient and of
the clinician, clash when requests for potentially inappropriate treatments are
received.Is there middle ground or does the ethics community even belong in the
center on these issues?A lively discussion of the current state of dying in
America, utilizing presentations by a seasoned Palliative Care clinician and a
nationally renowned attorney and author both experienced with these issues will
inform and challenge the audience. Included will be a historical and personal
perspective of the landmark Missouri legal case of Nancy Cruzan and the
subsequent constitutional imperative of self-determination. There will be
exploration of the increasing longevity and shrinking caregiver support ratios
which make the future of healthcare challenging to consider.
FRI 2:00 pm: Responding to the California End of Life Option Act: A
State-Wide Ethics Initiative (Elizabeth Dzeng, Lindsay Forbes, Barbara
Koenig, Neil Wenger)
Physician aid in dying (PAD) is legal in six U.S. states and many others are
considering implementation. We argue that bioethics programs have an obligation
to be at the �center� of the public response to PAD enactment. The End of Life
Option Act (EOLOA) in California requires that we balance the values of choice
and self-determination with other considerations. Tensions are not new to those
who routinely care for seriously ill patients. Death and dying has been central
to bioethics since its start. When California�s law passed, we asked: How can
California�s bioethics centers promote thoughtful deliberation to create
patient-centered policies? In 2015, we organized an emergency conference to
help health care institutions develop policies to guide response, addressing
varying degrees of participation, and managing conscientious objection. During
the proposed interactive workshop, we will describe the next phase of our
�response� to legalization. Based on one year�s experience, we will report on
our efforts, including reconvening the multidisciplinary stakeholders who
attended our original conference. Prior to the conference we will: survey key
health care organizations, including the development and administration of a
provider survey targeting physicians and social workers, often the key access
point for patients seeking assistance with dying; create a set of common data
elements to augment required reporting; and conduct and report the results of
an ethnographic study of 20 Californians who sought PAD, as reported by their
surviving family members and professional caregivers. We argue that bioethics
must become the moral �center� of discussion and debate.
Format
SATURDAY, OCTOBER 21
SAT 8:00 am: One Patient, or Two? Brain
Death and the Pregnant Patient (Jacob Dahlke, Robert Macauley, Thaddeus
Pope)
Death by neurological criteria and
refusal of medical treatment by a pregnant patient are both complex ethical
issues. The case of Jahi McMath highlights the complexity of the former, with
competing clinical claims, questions of unprofessional behavior by physicians,
and judicial and legislative deliberations with potentially revolutionary
implications. The latter raises the question of the moral value of the fetus
and the degree to which a pregnant woman's right to refuse treatment may be
limited, as codified by law in several states. When both issues are relevant to
a specific case, though, ethical decision-making becomes markedly more
complicated. This session will examine competing rights and responsibilities
toward a pregnant patient who is suspected to be-or has been declared-dead by
neurological criteria, through analysis of two cases. One took place in a state
where the family requested discontinuation of treatment but this was not
legally permitted, prompting a comparison to the well-known case of Marlise
Munoz in Texas. In the other case (in a different state), the family wished to
continue the pregnancy with the hope of a healthy baby, prompting discussion of
whether the patient should even be evaluated for brain death (both out of
concern for the fetus's well-being as well for potential financial hardship for
the family if brain death were confirmed), how long to continue the pregnancy
to maximize fetal well-being, and how organ donation figured into the treatment
plan (if at all). In both cases, clinical, ethical, and legal (both state and
federal) considerations will be addressed.
SAT 8:00 am: Getting to the Heart of Ethical and Safety Concerns Surrounding
Living Wills and POLST (Ferdinando Mirarchi)
Emerging research suggests ethical & safety concerns related to
utilization of advance directives and Physician Orders for Life Sustaining
Treatment (POLST). This session will equip ethicists and healthcare providers
with tools to assess institutional practices, implement education/safeguards,
minimizing patient safety risk and medical errors. The session will address
operational efficiencies gained by utilizing resuscitation safety checklists
and patient to clinician video testimonial in advance care planning. Advance
care planning documents have a profound ethical and safety concern related to
over and under-resuscitation. These medical errors can be fatal or continue the
life of a person against their autonomous wishes. The ethical and safety
violations occur when providers do not adequately understand the scope or
application of documents. In most cases, providers believe the documents call
for withholding or limiting interventions, when, in fact, they address the full
spectrum of treatment choices. Research indicates medical professionals have no
explicit requirements to assure competency in utilizing such documents. Current
practices represent risk to patients and compromised medical ethics. This
session will report the scope of the problem, identify differences between an
effective versus enacted living will. The session will provide guidance on how
to minimize patient safety risks, discuss easily deployable system safeguards,
such as the Resuscitation Safety checklist. Finally, the session review the
benefits of patient to clinician video testimonials as evidenced in the TRIAD
VIII study. Advance care planning, when done �well,� utilizing time honored
principals of medical ethics can safely improve patient care, reduce cost, and
minimize liability risks.
SAT 4:30 pm: Pivoting Perspectives, Different Centers: Complicated
Medical and Ethical Decision Making for an Infant with Trisomy 18 and
Congenital Heart Disease
(Janice Firn, Stephanie Kukora, Naomi Laventhal, Christian
Vercler)
Despite increased provision of supportive interventions for infants and
children with Trisomy 18, poor long term survival and considerable comorbidity
continues to spur debate regarding which therapies are beneficial and should be
offered to these patients. Using a case, this session will explore the diverse
viewpoints, roles, and responsibilities of parents and interprofessional
providers within and between centers to coordinate and determine ethically
appropriate care.The moderator�a neonatologist/ethicist�will introduce the
case: an infant with Trisomy 18 not offered surgical palliation for a heart
lesion found to be more severe than anticipated. His parents wish to extend his
life as long as possible and bring him home, and must choose between discharge to
hospice or surgery at another center. The first speaker� a
neonatologist/bioethicist with expertise in values conflicts and shared
decision-making, will discuss changing approaches to Trisomy 18 care, families'
perspectives on these children, how providers and parents view outcomes
differently, and the conflict between goals of �going home� vs �trying
everything.�The second speaker�a surgeon/ethicist, will weigh the obligations
of surgeons to offer or not offer operations they feel are non-indicated. This
speaker will discuss how to navigate conflicting perspectives from teams at
multiple institutions using competing frameworks for medical/qualitative
futility, and whether an operation not offered means 'ethically impermissible'
or 'not possible.�The third speaker� a social worker/clinical ethicist� will
discuss interdisciplinary disagreement between providers about the �right�
course of action and external pressures on these decisions, including media
publicity, parental support groups, and political influences.
SUNDAY, OCTOBER 22
SUN 9:15 am: Clinical Ethics and
Medical Futility from Theory to Practice to Practicality: Framing a Conceptual
Model (Michael O'Bleness)
As a matter of bioethics medical
futility is a values judgment framed in the struggle of competing and
oftentimes conflicting perceptions. The conflict over medical futility is an
encounter between three competing authorities, patient-physician-institutional
or more globally patients as a group, the medical profession, and socioeconomic
forces each desiring to exert autonomy. Ethical problems within the clinical
setting continue to develop with increasing complexity and variation. Complex
adaptive systems theory and evidence-based practice are utilized to understand
group dynamics while maintaining quality care. This proposed conceptual model
emphasizes the patient-clinician-institution relationship identifying areas of
independence and interdependence, based in assessing health literacy and
capacity, adopting applied clinical ethics in resolving conflict. The ability
of patients and families as consumers of healthcare to engage in a meaningful
dialogue with healthcare clinicians is fundamental to the decision-making
process and relies on accurate assessment of health literacy and capacity. Capacity
is central to an operational definition of health literacy referring to an
individual�s inherent capabilities and their established skills. This capacity
is influenced by familial customs and values, education, and prior experiences
with the healthcare system. This model capitalizes on the inherent strengths of
human capital (clinical staff) in promoting health literacy and maintaining the
relational autonomy of patient-clinician-institution. The implementation of
this conceptual model can help operationalize and be instrumental in,
establishing and maintaining open lines of communication within the
multidisciplinary team and furthering relations with patients and family
regarding end-of-life issues and treatment.
SUN 9:15 am: The Happy Demented Patient and the Law of End-of-Life
Surrogate Decision Making (Megan Wright)
When an incapacitated person needs medical treatment, surrogate
decision-makers, such as family members, physicians, or guardians, make the
treatment decision, which can be especially fraught in the end-of-life context.
The surrogate decision-maker may follow directions indicated in the
incapacitated person�s advance directive, if one has been completed, or may use
the �substituted judgment� or �best interests� standards of decision-making.
This presentation considers the case of the happy demented patient, who when
legally competent directed that life-sustaining or life-saving treatment be
withheld should they ever develop dementia, later develops dementia, and then
subsequently contracts pneumonia, which presents the question of whether they
should be given life-saving antibiotics. The presentation first reviews how
philosophers of wellbeing consider what is best for such a patient, and then
considers how the law of end-of-life surrogate decision-making applies to such
a case, demonstrating how existing legal guidance does not always lead to a
clear answer about whether this hypothetical patient should be given
antibiotics. The presentation concludes with a proposal to apply disability law,
which emphasizes capacity and supported decision-making, to the case of the
happy demented patient rather than existing end-of-life surrogate
decision-making law. Such an application would privilege capacity over
competence, and dignity over autonomy, and would in the case of the happy
demented patient likely lead to giving the patient antibiotics.
SUN 9:15 am: Shared Decision Making in the ICU: New Empirical Evidence to
Inform Best Practice (Jennifer Blumenthal-Barby, Marion Danis, Alexander
Kon, Elliott Weiss)
Shared decision making (SDM) is especially challenging�and important�in the
high-stakes, fast-paced ICU. Panel members will present an array of new
empirical data on SDM in the ICU that can inform best practice.We will delve
deeply into the messy details by questioning what SDM truly means in the ICU
and explore alternative models. The panel includes clinicians and nonclinician
researchers from five institutions. Panelists have empirical and conceptual
expertise in SDM and experience in clinical ethics consultation. - A
philosopher will dissect what it means to share a decision, drawing from
empirical work on the preferred decisional role of advanced heart failure
patients. - A neonatologist will consider the role of decision-level factors (e.g.
urgency, risk) in SDM preferences using surveys of parents of neonatal ICU
patients. - An adult intensivist will consider the role of the surrogate using
qualitative interviews of surrogates� self-perception of medical
decision-making. - A pediatric intensivist will explore informed non-dissent,
an underappreciated and underutilized model of SDM in the ICU. - A bioethicist
(and former ICU nurse) will examine how to approach SDM in the setting of
unilateral clinician refusal, using data after implementation of a medical
center-wide DNAR policy. - Attendees will be invited to participate in a
moderated general discussion. Together, we will consider how these empirical
data and conceptual models can and should inform SDM at the bedside. Further,
we will consider how the clinical ethics consultant can be most effective in
supporting patients, families, and clinicians through the SDM process.
SUN 11:00 am: Responding to Requests for 'Inappropriate' Medical
Interventions: Critical Comments from the Clinical Setting (Sharon Gray, Kamal
Kejriwal, Elijah Weber)
Responding to requests for so-called
�inappropriate� medical interventions continues to be a significant challenge
for both health care professionals and clinical ethicists. Recently, two groups
of scholars have attempted to clarify this concept, with an eye toward offering
practical guidelines to aid health care professionals in handling these sorts
of requests more effectively (Bosslet et al, 2015; Kon et al, 2016). There has
been a significant response to this work within the field of bioethics, with
many professional associations expressing their support for this work. Our own
local discussion, which has engaged with critical care nurses, intensivists,
and Bioethics Committee members has been less enthusiastic. Utilizing clinical
cases for illustrative purposes, we argue for the following criticisms. First,
we contend that identifying certain interventions as �strictly futile,� and
recommending against the provision of strictly futile interventions has almost
no clinical impact, because the most ethically vexing cases for clinicians
rarely involve strictly futile interventions. Next, we claim that this dialogue
fails to capture several reasonable aims of ICU-level care, and thereby fails
to adequately capture what constitutes an appropriate intervention in the ICU
setting. Finally, we contend that this dialogue fails to acknowledge the
significant role of patient values in determining what constitutes appropriate
care. Instead, the account of appropriate medical interventions being defended
here is itself implicitly value-laden, and is thereby subject to the same sorts
of concerns that led us to question the frequently discredited notion of
medical futility.
SUN 11:00 am: Mediating Disputes About Potentially Inappropriate Treatment
(Jason Byron)
There is a broad consensus that physicians should not offer treatment that is
physiologically ineffective or harmful, even when patients or their surrogates
request it. However, the boundaries between appropriate and inappropriate
treatment are often contested and unclear. Even when patients or their
surrogates request clearly inappropriate treatment, it can be challenging how
to communicate limits on care in a way that is compassionate and connects to
the patient's interests, values, and goals. How do we center care around
patient values when denying requests for inappropriate treatment? We present
two recent ethics consults that illustrate the challenges of these types of
disputes. In one case, an elderly patient is resuscitated in the field
following cardiac arrest but remains comatose and vent dependent. Because of a
cervical spine injury, he cannot be safely trached. Family insists on ongoing
vent support, while the ICU team feels prolonged oral intubation is inappropriate.
In the second case, a young woman with complex psychiatry history insists on
total parenteral nutrition despite negative GI workup. In both cases, there are
disputes about the patient's values and about the effectiveness of treatment
options. We discuss strategies for exploring patient interests, values, and
goals as distinct from patient preferences, as well as the importance of open,
compassionate communication. We conclude with practical tips for resolving
disputes about care in a way that honors patient values but that limits clearly
inappropriate treatment.
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