Laurie Loughney, LNHA,CALA,CSW, AHM,CDP, BS Psychology
Longtree & Associates, LLC
848.218.1320
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Longtree & Associates, LLC www.njcala.com
Laurie Loughney, LNHA,CALA,CSW, AHM, BS Psy.
Longtree & Associates, LLC
848.218.1320
www.njcala.com
Facebook: LongtreeEducation
Longtree provides continuing educations seminars,
LNHA Course, CMA Course, CALA Course and the
NCCDP approved Dementia Course.
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Part I: Brief Overview of the Ethics in End of
Life Decision Making
Resources: Hasting Center for BioEthics
Margaret P. Battin, “Terminal Sedation: Pulling the Sheet Over Our Eyes,”
The Palliative Care Policy Center
Americans for Better Care of the Dying
Part II: Ethics in the world of Long Term Care
Part III: End of Life Choices and Alternatives
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Framing the Issue
End-of-life care and its many dilemmas capture public attention when they
make national news. The story often involves a family seeking a court order
to remove life support from a patient who, medical experts say, is in a
vegetative state with no hope of recovery.
The Terry Schiavo case in 2005
14 appeals and numerous motions, petitions, and hearings in the Florida courts; five suits in federal district court;
Florida legislation struck down by the Supreme Court of Florida; federal legislation (the Palm Sunday Compromise);
and four denials of certiorari from the Supreme Court of the United States.
Nancy Cruzan case in 1990
In Cruzan's case the Missouri Supreme Court majority confirmed that the state's interest in life encompassed the sanctity of
life and the prolongation of life. She was not terminally ill and, based on medical evidence, would "continue a life of
relatively normal duration if allowed basic sustenance."
Karne Quinlan case in 1976. When the news fades, so does public attention
to end-of-life decisions.
Although Quinlan was removed from mechanical ventilation during 1976, she lived on in a persistent vegetative state for
almost a decade until her death from pneumonia in 1985.
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Approximately 2.5 million Americans die each year in the United States.
For the nearly 70% of them who live out their final days in hospitals,
nursing homes, and at home in hospice care.
Decisions must continually be made about what treatment to administer,
what treatment to cease or withhold, what treatment to continue, and
what treatment to taper off.
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TIMING IS EVERYTHING………
While the fact of death remains inevitable, its timing is often very much
a function of human agency.
Once it was common to speak of nature taking its course, but today it
is more common to view death as a matter about which people—
individuals at or near death, or their surrogates—have some control.
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The FAMILY ROLE in ETHICS OF END OF LIFE ISSUS
• They may forestall death by choosing heroic measures to sustain
life, such as resuscitation.
• Or they may hasten death by forgoing treatment, or by seeking
to take action to bring life to an end.
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BIOETHICS
Because of its profundity, end-of-life
decision-making occupies center stage in
contemporary American bioethics. For three
decades, medical professionals and
policymakers have looked to bioethicists for
advice in shaping medical guidelines and laws
on end-of-life care.
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BIOETHICS – A Definition
a field of study concerned with the ethics and
philosophical implications of certain biological and
medical procedures, technologies, and treatments,
as organ transplants, genetic engineering, and care
of the terminally ill.
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Focus on Autonomy
• Autonomy of the Person
• Advance Directives
To do otherwise would be an inexcusable
invasion of individuals’ interests in bodily
integrity and in charting their own life plan in
accordance with their own values, preferences,
and interests.
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When individuals have not made manifest
their decisions about medical care, the
ethical and legal protocol is to implement
a person’s presumed wishes through a
doctrine known as “substituted judgment.”
Under this doctrine, a surrogate must make
decisions for a patient. If the patient has
not appointed a surrogate in an advance
directive, close family members are
ethically and legally empowered to make
decisions for the patient.
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•
•
•
Too General
Too Specific
Family did not
understand the
specifics
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Welfare of the individual
Under such circumstances, one might argue that
the decisions are inauthentic—they would not
serve the person’s best interest as that person
would have defined it, had he or she been capable
of reasoning. Traditional bioethical analysis
contends that there is rarely, if ever, any
justification for overruling the decisions of people
with decision-making capacity. If a decision seems
to be uncharacteristic of an individual—
inconsistent with the person’s deeply held values,
beliefs, and goals—then inquiring about the
soundness of the person’s decision-making capacity
is justifiable
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The interests of others
Some bioethicists emphasize the importance of
family and community interests in decision-making
at the end of life. However, mainstream bioethical
analysis rejects them as valid considerations unless
the patient chooses to have them taken into
account. So does the law. Although judicial
decisions usually proclaim that an individual’s right
of self-determination must be balanced against the
state’s interest in the well-being of the individual’s
minor children, even that interest has virtually
never been found to outweigh the patient’s right
of self-determination
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 Interests
of health caregivers
 Societal interest in allocation of scarce
resources
Medical resources are scarce. That much is
uncontroversial. But of all the reasons for
overriding patients’ autonomy, the societal
interest in the efficient use of scarce health
care resources is the most controversial. Some
people believe that an individual’s decision to
continue medical care at the end of life must
be weighed against the cost-benefit ratio
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COST-BENEFIT
Proponents further contend that it is ethically
permissible—indeed, ethically obligatory—to deny
resources if they will provide little or no benefit when
the cost is being borne in whole or in large part by
society: by taxpayers through Medicare, Medicaid, or
other government programs, or through private
insurance.
•
BEDSIDE RATIONING
Opponents of this position acknowledge the scarcity of
resources, but claim that such “bedside rationing”
violates the physician’s professional obligation to act
solely in the patient’s best interests, and that denial of
treatment should be made at the policy, rather than
the individual, level

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Palliative care
The realization that patients’ control over their
dying needs to include adequate relief of pain has
led to increased education of doctors about
palliative care. It has also led to laws and medical
policies that permit the use of palliative
medications even if it unintentionally hastens
death. In 2008, the American Medical Association
adopted a policy supporting the use of sedation to
the point of unconsciousness at the end of life in
the rare circumstances when palliative measures
are ineffective.
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Physician-aided dying
 The
debate over the legalization of
physician-aided dying may be heating up
again with a referendum to legalize it on the
Washington state ballot in 2008. It has been
legally practiced in Oregon since 1997, with
diminished public controversy and—all but
the most stalwart opponents would agree—a
great deal of success
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 Persistent
vegetative state
Advance directive legislation frequently cites
persistent vegetative state as a reason for
forgoing life-sustaining treatment. But recent
developments in neuroscience have made it
clear that this condition is not the unitary
phenomenon it was once thought to be
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 Denial
of treatment
Perhaps the issue people least want to talk
about may prove to be the most important
because it is closely bound up with larger
issues of health care reform. That issue is the
denial of some forms of medical treatment at
the end of life because of the belief that they
provide little or no benefit and consume scarce
health care resources—in other words,
rationing
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Ethics
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?
Palliative
Care
Family will not agree to a DNR for an actively dying, and
terminally ill, patient
 A wife of a 50-year-old father with advanced ALS is
concerned about his increasing admissions to the hospital,
wondering if she should sign a do-not-hospitalize (DNH)
order
 A family of an elderly woman with advanced dementia,
frailty, and COPD are holding out hopes (against prevailing
medical opinion) that her current hospitalization and
ventilation will get her back to her SNF
 A family of an elderly woman with moderate dementia,
COPD, and heart issues wonder how much longer she can
live alone

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
“Palliative care is the embodiment of ethics at the
end of life.”
– Mission executive

“Palliative care handles end-of-life and goals of care,
ethics assists when there is unresolved conflict.”
– Palliative care practitioner

“Ethics concerns goals of care, palliative care matches
treatment plans to those goals.”
– Ethicist

“Western medicine tends to turn care modalities into
a clinical specialty when they find a way to bill for
services.”
– Alternative medicine specialist
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Joanne Maxwell,
Surveyor--‘Take the Ding to do
the right Thing!’
In 1993- over 49% of
nursing home
residents were in
restraints……
In 2015…
Reduction of
Restraints is huge!
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•
•
•
•
Seeing the patient and family as one unit
Resident Centered Care – Matching
Regulations
Strong emphasis on non-pharmacological
interventions
Stronger emphasis on enhancing quality of
life.
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Re-Think
Re- Connect
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Restore
Health
Care
Cost
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CMS SAYS….
Whole Person Approach
Care Plans
Preferences of Person/ Family
Partnerships
Decision making Process
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1.
Enhance
2.
Strengthening the CMS Standards of Care
3. Promote PFCC!!
4. Quality Improvement Plans
5. Strategic Partnerships in Resident carefamily, community collaborations and other
clinical partnerships.
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In the Nursing Home Federal RegulationsPP – Appendix
The word ‘ RESIDENT’ is written over 1,200
times….
The word ‘ Family’ is written over 70
times…..
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Community Life ----is more than the activity
calendar…..
RELATIONSHIPS
Lifestyle
Including End of Life
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You will learn more about a person in an hour
of play, than a year of conversation….
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PART III- End of Life Choices and Alternatives
WHAT IS A GOOD DEATH?
What Does It Look Like?
What Does It sound Like?
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I- information gathering
D- evlop the story
E- xplore all conceivable responses
A- sses each possible response
S- Select a course of Action
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EXPLICIT
IMPLICIT
1. Safe
1. Supportive
Environment
2. Cultural
2. Clinical
3. Philosophical
4. Additional ‘of and3. Regulatory
4. Legal
beyond
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Against our confidence in mastery and control,
we need to remember that old age and dying
are not problems to be solved but human
experiences that must be faced. In the years
ahead, we will be judged as a people by our
willingness to stand by one another, not only in
the rare event of a natural disaster but also in
the everyday care of those who gave us life
and to whom we owe so much.”
-Dr. Leon Kass, Washington Post article
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