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An Outrageous Proposal:
Require Natural Dying for Patients with
Advanced Dementia
Stanley A. Terman, PhD, MD
Psychiatrist and Medical Director
Caring Advocates, Carlsbad, CA
Sept 11, 2009
Center for Clinical Ethics
and Humanities in Health Care
University of Buffalo
Disclaimers
I am the author of The BEST WAY to Say Goodbye: A Legal Peaceful
Choice at the End of Life (2007), Lethal Choice (2008) and Peaceful
Transitions: An Ironclad Strategy to Die When and How YOU
Want (2009). I am also the co-developer of the combined Advance Care
Planning document, the Physician’s Orders to Permit Natural
Dying/Advance Directive to Permit Natural Dying. I also created the
My Way Cards—Living Will. As the holder of intellectual rights to these
and similar items. I may receive royalties from sales (which may become
profitable). These items are sold through a corporation registered in
California that I own: the Institute for Strategic Change, which also
accepts the honoraria I receive for presentations.
One main distributor of these products is a California 501(c)(3) non-profit
organization called Caring Advocates. I serve this organization as its
Medical Director and President. If membership in Caring Advocates
increases, funds may be available to pay me for my professional
contributions to this organization.
Critical Editors
• Ronald Baker Miller, MD (U C Irvine)
• Michael S. Evans, MSW, JD (U San Diego)
• Guy Micco, MD (U C Berkeley)
• Thaddeus Mason Pope, PhD, JD (Widener U)
• Karl E. Steinberg, MD, CMD (CALTCM)
• Robert Gibson, PhD, JD (Edgemoor Hosp)
“Outrageous”
• Grossly offensive to decency or morality.
• Being well beyond the bounds of good taste.
• Having no regard for morality.
• Violent or unrestrained in temperament or
behavior.
• Extremely unusual or unconventional;
extraordinary.
• Being beyond all reason; extravagant or
immoderate.
Words used to mean “outrageous”:
The PROPOSAL to REQUIRE
NATURAL DYING
IF two physicians, at least one of whom has
training in Neurology, independently agree
that a patient has lost “meaningful
consciousness,” and that the likelihood to
regain meaningful consciousness is less than
1% — within a reasonable degree of medical
and scientific certainty,
THEN the physician attending the patient will
be notified that the treatment plan will now
Require Natural Dying.
Two Allowed Exceptions:
Both require that the patient, when s/he was
previously competent, to have provided clear
and convincing written documentation that
s/he would want to continue treatment that
will sustain their “biologic existence” as long
as medical technology makes that possible—
regardless of his/her future burdens to self,
family, or society.
The FIVE P’s of Outrageous:
• Political – 3 branches of government
• Professional – For patients or physicians?
Examples of clinical/strategic proposals
• Personal – Fear of pain, indignity, & very
slow dying after losing capacity does not
lead many to do Advance Care Planning
• Press – how the media portray the issues
 My PROPOSAL: Require Natural
Dying for Advanced Dementia
Outrageous Politics: Judicial
In the Matter of Westchester County Medical
Center, on Behalf of Mary O’Connor,
Appellant. Helen A. Hall et al., Respondents;
Court of Appeals of New York; 72 N.Y.2d 517;
534 N.Y.S.2d 886; 531 N.E.2d 607. Decided
October 14, 1988, as amended April 11, 1989.
The precedent set by the highest court in New
York State made it virtually impossible for
family members to withdraw life-sustaining
treatment if the patient has no Proxy Directive
or Living Will. In such cases, what is required?
“Clear & convincing” evidence for the exact
medical treatment the patient would, or would
not want, for the precise future condition the
patient, when competent, described previously.
Dissenting Judge Simons and most others
(including Attorney George Annas) considered
this standard unreasonable since it is virtually
impossible for the average person to meet.
The Family Health Care Decisions Act, if also
passed by the Assembly, would help solve this
problem, but not entirely (as I will discuss).
Is this definition of “clear and
convincing” outrageous?
“The clear and convincing evidence standard
of proof requires a finding of high
probability, based on evidence so
clear as to leave no substantial doubt
and sufficiently strong to command
the unhesitating assent of every
reasonable mind.” (2001, California, re:
Robert Wendland.) The definition varies
among State courts which may refer to the
definition in another State.
Outrageous: The court ruling regarding
“O’Connor was a bizarre miscarriage of sexist
injustice written by a mentally ill judge who was
abusing a trust, having sex with a trustee, and
even in the process of extortion while the case
plodded through the NY courts. He went to
jail. Patients went to Purgatory. NY, whose legal
minds seem clouded by the ‘Magisterium,’ went
into suspended animation.” —Steven Miles,
MD, Professor of Medicine and Bioethics,
University of Minnesota Medical School, whose
article discusses the gender bias: Courts,
Gender, and the ‘Right-to-Die.’”
Why New York State needs to pass
the Family Health Care Decisions Act
Attorney George J. Annas (1988). Hastings
Center Report: “By rejecting the substituted
judgment approach (based on other than specific
predictions) and the best interests approach, this
opinion threatens the welfare of such
patients by subjecting them to involuntary
medical interventions that may be cruel,
painful, pointless and degrading.”
SJ = decision-making process for the current situation that
applies a person’s known values and beliefs, derived from
past statements or decisions made about similar situations
to state what the person would have decided, usually formed
from the opinions of those who know him/her well.
Outrageous Politics: Legislators
Outrageous: The Family Health Care Decisions Act was
introduced in 1994 but legislators have not passed it.
If the does pass, there will be an interesting disparity:
Next of Kin—who have NOT been legally designated by
the patient—will be able to refuse artificially
administered nutrition & hydration, while authorized
agents/proxies can do so ONLY if the Proxy Directive
stated they have “reasonable knowledge” about their
wishes regarding ANH. (Potential for abuse: “The
Sooner Mother Dies, the Better,” in Peaceful
Transitions: An Ironclad Strategy to Die When
and How YOU Want.)
The Family Health Care Decisions Act has
an important exclusion (in upper case letters):
Its definitions: “HEALTH CARE” MEANS ANY TREATMENT,
SERVICE, OR PROCEDURE TO DIAGNOSE OR TREAT AN
INDIVIDUAL’S PHYSICAL OR MENTAL CONDITION…
Then, under “DECISIONS TO WITHHOLD OR WITHDRAW
LIFE-SUSTAINING TREATMENT”:
 PROVIDING NUTRITION AND
HYDRATION ORALLY, WITHOUT RELIANCE
ON MEDICAL TREATMENT, IS NOT HEALTH
CARE UNDER THIS ARTICLE AND
IS NOT SUBJECT TO THIS ARTICLE.
The significance of the exclusion in the
Family Health Care Decisions Act:
When informed, many people do not want to
endure the total dependency and indignity (as
they would now define it) of the stage of
Advanced Dementia and there was NO hightech life-sustaining treatment such as a
ventilator, or even the low-tech provision of
“artificial” (really, medically administered)
nutrition and hydration required for continued
existence… which would make them stuck until
they died of something else, in 1 to 3+ years.
Many informed people want to refuse manual
assistance to receive oral food & fluid in
Advanced Dementia to avoid burdens…
1. to the patient (pain and suffering that may
not be recognized);
2. to the family (emotional, physical, financial);
3. to our society (expensive “futile” treatment).
People are dimly aware of # 1 and 2: Advanced
Dementia is the “closet-within-the-closet.”
# 3 is the elephant in the room in healthcare
reform: a staggering, bankrupting epidemic…
Outrageous: Some State legislators’
attitude toward withholding manual
assistance to administer oral food & fluid.
An autonomous person has the
Constitutional right to refuse unwanted
intrusion to his/her body…
and the Constitutional right to designate
an agent/proxy to make decisions on
his/her behalf.
(One does NOT lose her Constitutional
rights because of incompetency.)
Outrageous Legislators:
Re: Oregon’s 1993 health care directive statute,
Attorney George Eighmey wrote: “Oregon’s
prohibition of a proxy withholding food and
fluid on behalf of a patient based on the
patient’s prior competent request is arguably
unconstitutional.”*
Also outrageous: Some States that do not
have restrictive statutes still adopted Oregon’s
wording for their POLSTs: “Always offer
food if medically feasible.” * May 31, 2008 e-mail.
Mr. Eighmey is the Executive Director of Compassion & Choices of Oregon.
Outrageous Executive Branch:
In enforcing laws, the Department of Justice is
inconsistent on whether or not to indict and
prosecute. Some “mercy killers” have been
sentenced to years of imprisonment; e.g., 12
years for 84-year-old Albert Pollack of La
Mesa, CA, whose wife had dementia. Others
are not charged due to “lack of evidence” even
after they have admitted the act.
Intrusion that violated the separation of
powers: Governor Jeb Bush of Florida, re:
Terri Schiavo. Similarly on a national scale.
The FIVE P’s of Outrageous:
Political: Do our laws fulfill our needs?
• Professional – For patients or physicians?
Examples of clinical/strategic proposals
• Personal – Fear of pain, indignity, & very
slow dying after losing capacity does not
lead many to do Advance Care Planning
• Press – how the media portray the issues
 My PROPOSAL: Require Natural
Dying for Advanced Dementia
N. Engl. J. Med. 2007;356:593-600
 Consider adding to “think”: BE PROACTIVE.
Survey: One out of six physicians
objects to palliative sedation
“…we asked the survey respondents whether they have a
religious or moral objection to terminal sedation
(administering sedation that leads to unconsciousness in
dying patients)…”
• 182 out of 1093 physicians objected to terminal
sedation, which is one out of six (16.7%).
• Of those who objected, six out of ten (58%) also did
not feel obligated to refer the patient to a
physician who would provide this treatment.
• Note: 5-35% of terminally ill patients need relief
for intractable symptoms by Palliative Sedation.
Quill, T. E., Byock, I. R. (2000). Responding to intractable terminal
suffering: the role of terminal sedation and voluntary refusal of food and
fluids (for ACP-ASIM End-of-Life Care Consensus Panel). Ann Intern Med.
132:408-414.
Religion, conscience, and controversial
clinical practices. - Curlin FA et al. N Engl J
Med - 8-FEB-2007; 356(6): 593-600
▲
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182/(911+182) = 16.7%. Only 58% of “objectors” would refer.
Compared to the “Do not object group,” the odds of “objectors” are
obligated to disclose all possible options was 0.4; and to refer, 0.5.
Paternalism v. Autonomy
“If physicians' ideas translate into their practices, then 14%
of patients — more than 40 million Americans — may be
cared for by physicians who do not believe they are
obligated to disclose information about medically
available treatments they consider objectionable. In
addition, 29% of patients — or nearly 100 million Americans
— may be cared for by physicians who do not believe they
have an obligation to refer the patient to another provider
for such treatments.”
“These conflicts might be understood in the context of
perennial debates about medical paternalism and
patient autonomy. Strong forms of paternalism are based
on the assumption that physicians know what is best for
their patients and may therefore make decisions without
informing their patients of all the facts, alternatives, or risks.
Paternalism is widely criticized for violating the right of
adults to self-determination.”
 Or the conflict between a professional person’s duty to
serve versus his/her moral/religious preferences.
For physicians and their patients,
which is more outrageous?
A) To be denied Palliative Sedation when
you are terminally ill (when it may be too
late to search for a willing physician) so that
you will experience unbearable pain and
suffering in your last few days or weeks?
Or,
B) To ask a physician to agree as you sign
your consent now, when competent—even
if it might (hopefully) be years before these
physician’s orders are actually implemented?
Consent for Palliative Sedation
▲
Physicians/institutions may not
permit the refusal of food & fluid
A patient’s wishes may not be honored if they
are “contrary to generally accepted
health care standards applicable to the
health care provider or institution.”
(California)
Religious: Ethical and Religious Directives, the
2004 Allocution of Pope John Paul II, and the
further teaching of Pope Benedict XVI.
Secular: President’s Council on Bioethics (2005)
“I’m sorry.
The
President’s
Council on
Bioethics
does not
consider
her Living
Will
moral.”
Here again, the person engaged in Advance
Care Planning may wish to make sure—by
obtaining a doctor’s signed order, NOW.
▲
The FIVE P’s of Outrageous:
Political: Do our laws fulfill our needs?
Professional: Get a doctor to sign NOW.
• Personal – Fear of pain, indignity, & very
slow dying after losing capacity does not
lead many to do Advance Care Planning
• Press – how the media portray the issues
 My PROPOSAL: Require Natural
Dying for Advanced Dementia
 Upstate New Yorkers’ actions do not reflect
their stated feelings.
Not asked: “Doubt it will be effective.”
(Important since Living Wills have
received such bad professional press. )
Possible unintended consequences of passing
the Family Health Care Decisions Act: (part 1)
General: Previous research by Lois Steinberg
and others at Sarah Lawrence College led to
this conclusion:
A huge educational effort will be needed to
inform people about Proxy Directives since
9 out of 10 surveyed people believed a
spouse could make medical decisions for an
incapacitated patient who did NOT have a
health care proxy.
Possible unintended consequences of passing
the Family Health Care Decisions Act: (part 2)
When the excitement blossoms after the
Assembly passes, and the Governor signs the
Family Health Care Decisions Act, those who
are aware (including physicians who may not
be paid for Advance Care Planning if gutted
from Obamacare), most will think: “Why
bother creating Advance Directives since the
new law allows family members to speak for
incapacitated patients.” (My prediction.)
Possible unintended consequences of passing
the Family Health Care Decisions Act: (part 3)
Specific: The new law’s exclusion about oral
food and fluid is more subtle than the twodecade long, precedent-setting ruling by the
New York State’s highest court headed by
“Sol Wachtler,” that forbids “Substituted
Judgment.”
More subtle  Less understood.
Possible unintended consequences of passing
the Family Health Care Decisions Act: (part 4)
Therefore, the unintended consequence of
the passage of this law might be more
complacency—just when aging individuals
and society need more vigilance, just when
the epidemic of Alzheimer’s and related
dementias are about to increase to staggering
proportions due to the baby boomers
“coming of age” and their longer living
parents.
The dementia epidemic will increase
to staggering proportions
• Fourteen million baby boomers are destined to
suffer from dementia (10 million from Alzheimer’s
dementia, and 4 million from other dementias).
• Plus those presently older: some experts estimate that
for those over the age of 85, 47% will suffer from
some stage of dementia.
• Of those who will suffer from dementia, 43% will “need a
high level of care, equivalent to that of a nursing home.”
• The life-time risk of developing dementia for those who
reach the age of 55 is one out of five for women, and
one out of seven for men.
The staggering dementia epidemic
• A married couple whose four parents are now alive has a
7 out of 8 chance that at least one parent will die with
the ravages of dementia. The chance that at least two
parents will die this way is about 1 in 2.
• This looming problem is so huge that it threatens to
completely overwhelm our medical, financial, and
caregiving resources. It could also destroy the US and
world’s economies.
Alzheimer’s Disease: Facts and Figures. Published by the Alzheimer’s Association, March, 2008.
Brookmeyer R, Johnson E, Ziegler-Graham K, Arrighi HM. (2007). Forecasting the Global Burden of
Alzheimer's Disease. Alzheimer’s and Dementia, 3:186-191.
Ross LK, Brennan C, Nazareno J, Fox P. Alzheimer’s Disease Facts and Figures in California: Current
Status and Future Projections. Prepared for the Alzheimer’s Association, California Council, Feb.
2009. Retrieved on 3-17-09:
www.sanalz.org/site/DocServer/California_Alzheizmer_s_Data_Report_2008.pdf?docID=981
The plight of the “sandwich generation”: to a couple’s economic struggle that required 2 wage-earners
add the burden of caregiving, which warrants the description of this book title: The 36-Hour Day.
The FIVE P’s of Outrageous:
Political: Do our laws fulfill our needs?
Professional: Get a doctor to sign NOW.
Personal: Essential education: Ceasing
food & fluid to avoid prolonged
lingering in Advanced Dementia
• Press – how the media portray the issues
 My PROPOSAL: Require Natural
Dying for Advanced Dementia
The outrageous press: “Death Panels”
Mischaracterize the voluntary seeking of endof-life counseling that Medicare and the
government insurance option that HR 3200
PROPOSAL would have paid for. Could anyone
believe that $75 would induce physicians to
influence patients to chose to REFUSE instead
of to ACCEPT life-sustaining treatment—both
of which are possible?
There is (some) evidence that patient
discussions with physicians are effective:
Regional variations exist in COMPLETION rates
for Health Care Proxies: Rochester, at 47%, is the
highest; and Utica, at 35%, is the lowest.
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 Supports the idea that talking about Advance Care
Planning, and completing documents are correlated.
“Associations Between End-of-Life
Discussions, Patient Mental Health,
Medical Care Near Death, and Caregiver
Bereavement Adjustment”
Conclusions: Having end-of-life
discussions are associated with less
aggressive medical care near death,
earlier hospice referrals, better patient
quality of life, and better family
bereavement adjustment.
Wright, AA et al. JAMA. 2008;300(14):
1665-1673.
Outrageous: Press
• Mischaracterize the voluntary refusal of
food and fluid as:
• Back door Physician-Assisted Suicide
• Barbaric horrible death by starvation
• If they characterize a doctor who was
willing to provide abortions as a “mass
murderer” (before he was killed), what
will they call a physician who proposes,
“Require Natural Dying for Patients in
Advanced Dementia?”
The FIVE P’s of Outrageous:
Political: Do our laws fulfill our needs?
Professional: Get a doctor to sign NOW.
Personal: Essential education: Ceasing
food & fluid to avoid lingering in
Advanced Dementia
Press: Reporting truth vs supporting a
political or religious point of view?
 My PROPOSAL: Require Natural
Dying for Advanced Dementia
As brain function deteriorates,
is there a point when
“personhood” has completely
gone, leaving only the biologic
shell of the former person?
If so, by what criteria?
If so, should caregivers and
providers then cease to provide
manual assistance for them to
ingest oral food and fluid?
The PROPOSAL to REQUIRE
NATURAL DYING
IF two physicians, at least one of whom has
training in Neurology, independently agree
that a patient has lost “meaningful
consciousness,” and that the likelihood to
regain meaningful consciousness is less than
1% — within a reasonable degree of medical
and scientific certainty,
THEN the physician attending the patient will
be notified that the treatment plan will now
Require Natural Dying.
Two Allowed Exceptions:
Both require that the patient, when s/he was
previously competent, to have provided clear
and convincing written documentation that
s/he would want to continue treatment that
will sustain their “biologic existence” as long
as medical technology makes that possible—
regardless of his/her future burdens to self,
family, or society.
Exception 1: If the patient has the
independent private financial means to pay
for continued treatment, then such treatment
may be provided without further discussion.
Exception 2: If the patient does not have an
independent private means to pay for
continuing life-sustaining treatment but their
family members or designated decisionmakers still want life-sustaining treatment to
continue, then these patients will be evaluated
on a case-by-case basis by a committee
comprised of individuals who represent
diverse public and professional backgrounds.
Conflict Resolution
Conflict resolution will be modeled on the
only successful protocol to handle nonbeneficial “futile” medical treatment: Texas’
Advance Health Care Directive Act (1999).
Note one significant difference: the sole basis
for withholding life-sustaining treatment
including food and fluid is the irreversible
loss of meaningful consciousness; hence, no
one can argue that the administration of food
and fluid should continue since it can achieve
the goal of maintaining weight.
Meaningful Consciousness
Meaningful Consciousness is necessary
to possess “personhood.” It requires the
mental capacity to perform five functions:
to be aware, to communicate, to reason, to
remember, and to interact in relationships:
1. To be consciously aware of one’s
environment through sensory perception to
experience life;
2. To understand verbal communication and
to express one’s feelings and wishes;
Meaningful Consciousness
3. To use reasoning to develop purposeful
plans and agendas to fulfill one’s wishes;
4. To remember the significant events and
relationships in one’s life that determined
one’s values when making decisions; and,
5. To be able to interact in relationships with
others, including—if it is within one’s belief
system—a Supreme Being.
How certain is “irreversible”?
“Within a reasonable degree of medical and
scientific certainty, the probability of
regaining meaningful consciousness is less
than 1%”
means
“The physician has formed an opinion that
has a 95% chance of being correct: If s/he
were to examine 100 patients with a similar
clinical condition, no more than 1 would ever
ultimately regain meaningful consciousness.”
What does “offer” food & fluid mean?
• Do NOT put the straw in the patient’s mouth;
• Do NOT spoon-feed the patient;
• Especially do NOT put puree at the rear of
the patient’s tongue to evoke his/her
swallowing reflex;
• Do NOT use “techniques” to start chewing
and swallowing such as sing-a-longs or
tickling the chin;
What does “offer” food & fluid mean?
• Do NOT role-model eating; and,
• Do NOT encourage eating and drinking by
verbal or nonverbal gestures; however,
• DO repeatedly state verbally that food and
fluid are available in front of the patient, if
s/he desires them.
 Goal: To allow for the remote possibility
that dehydration will improve the patient’s
brain function enough so s/he again knows
how to eat and drink independently.
The Proposal to REQUIRE Natural
Dying would NOT kill persons. (1)
The principle of compassion: Patients NEVER
lose their “moral standing.” We always care for
them in an appropriately loving way.
This means that at some point, the kindest,
most compassionate response is to let nature
takes its course; that is, to Permit Natural
Dying. Since many people will fail to create
clear and convincing Advance Care Documents
to memorialize their preferences, our laws
should REQUIRE Natural Dying.
The Proposal to REQUIRE Natural
Dying would NOT kill persons. (2)
Dying with Advanced Dementia can be a long
process during which patients lose the brain
function necessary to function as a “person”
months to years before their bodies finally die.
Due to loss of brain function, patients at some
point will “cease to exist as persons.”
Natural Dying does not kill “persons” because
the “person” has already ceased to exist.
REQUIRING Natural Dying is totally
consistent with medicine’s
oldest principle:
“First, do no harm.”
Although unable to enjoy any
positive aspect of living, patients in
Advanced Dementia can still
experience pain and suffering.
An illustration (from “My Way Cards”)
Patients’ burdens when they die
with a diagnosis of dementia:
• less likely to be referred to physicians who provide Comfort
Care: 9% versus 25%;
• prescribed fewer Comfort Care medications—28% versus 51%;
• received one-third as much medication after breaking a hip;
• one-fifth as likely to receive PRN pain medication;
• only 7 percent of the patients died with a low level of suffering
while 63.4 percent and 29.6 percent of dementia patients die
with a high and intermediate level of suffering, respectively;
• 26% had “high or very high degree” of “unbearable suffering”
including pain, breathing difficulties, cramps, contractures,
pressure ulcers, vomiting, agitation, confusion, and anxiety.
Discussion of unrecognized/under- or un-treated pain and suffering in
Advanced Dementia: see Chapter 12, Peaceful Transitions: An Ironclad
Strategy to Die How and When YOU Want, which cites:
• Sampson EL, Gould V, Lee D, Blanchard MR. (2006). Differences in care
received by patients with and without dementia who died during acute
hospital admission: a retrospective case note study. Age Ageing 35; 187–189.
• Morrison RS, Siu AL. (2000). A comparison of pain and its treatment in
advanced dementia and cognitively intact patients with hip fracture. J Pain
Symptom Manage 19; 240–8.
• Nygarrd HA, Jarland M. (2005). Are nursing home patients with dementia
diagnosis at increased risk for inadequate pain treatment? Int J Geriatr
Psychiatry 20(8);730-7.
• Rurup ML, Onwuteaka-Philipsen BD, van der Heide A, van der Wal G, van
der Maas PJ. (2005). Physicians' experiences with demented patients with
advance euthanasia directives in the Netherlands. J Am Geriatr
Soc.;53(7):1138-44
• Aminoff BZ, Adunsky A. (2005). Dying dementia patients: too much
suffering, too little palliation. Am J Hosp Care; 22: 344–8.
Benefits of the Proposal to Require Natural
Dying for patients in Advanced Dementia
The freedom to control when we die, can—
and often does—lead to choosing to live
longer.
—Both at the individual and societal levels.
Individual example: if you use My Way Cards to
draw the line regarding when you INSIST that
others Permit Natural Dying, then you are more
likely to be treated if you get pneumonia in a
middle stage of dementia.
Benefits of the Proposal to Require Natural
Dying for patients in Advanced Dementia
There is no disease that is more expensive to
treat for which the benefit to patient is less
than maintaining the existence of all patients
who suffer from Advanced Dementia.
—If we ever start discussing rationing so
we can afford to pay for medical care for
younger people who may then live longer and
healthier lives, this is the place to start.
Benefits of the Proposal to Require Natural
Dying for patients in Advanced Dementia
Family members’ angst, and then guilt, over
making the decision to end a loved one’s life
will decrease because “it will be the law.”
No more will there be court battles raging for
years among family members, or between
family members versus health care providers
or institutions or government (which is often
accompanied by emotional and financial drain
and invasion of privacy).
Benefits of the Proposal to Require Natural
Dying for patients in Advanced Dementia
Even before the proposal becomes law . . .
if we take it seriously now, and
if we discuss it with passion, then we can:
1. Establish the foundation that Natural Dying
is humane for patients with Advanced
Dementia,
2. Increase awareness so more people will
engage in effective Advance Care Planning.
An option for individuals NOW:
To provide clear and
convincing evidence
regarding your endof-life treatment
preferences, and to
prevent others from
challenging them…
 create a Living
Will by sorting
My Way Cards.
My Way Cards…
provide a glimpse of the burdens to patient
and to family. Each symptom, loss of function,
unwanted behavior, and conflict with life-long
values is portrayed on a jumbo-sized card. One
side of the card has words in large letters;
the other side has a cartoon-like illustration.
During Advance Care Planning, people sort the
cards to select those items they DO want their
future decision-makers to consider. They also
indicate how strongly they want their future
decision-makers to follow their current wishes.
Creating a Living Will by sorting My Way Cards
TWICE strictly fulfills the requirements of the
O’Connor ruling: a person’s statement of endof-life preferences must be created…
A) diligently,
B) with solemnity,
C) when the patient was competent and fully
informed of the consequences and alternatives,
D) and show evidence that the decision for these
preferences is consistently held over time.
Palliative Sedation
Incontinence
A serious
problem
about
Living
Wills:
they are
NOT selfenforcing.
Use a “My Way Cards—Living Will”
with a MOLST:
“If the patient lacks capacity and has not
designated a health care agent or proxy by
completing a Health Care Proxy form, then
“clear and convincing evidence” must be
provided. This may be in the form of a living
will or repeated oral expression by the patient.”
 Even if the Family Health Care Decisions Act is
passed, those who want to empower their future
decision-makers to refuse oral food and fluid must
use a My Way Cards—Living Will or equivalent.
Also consider, as an alternative to
the MOLST, a set of “final” orders
that a doctor can sign:
the Physician’s Orders to
Permit Natural Dying,
which is attached to the Advance
Directive to Permit Natural Dying
Peaceful Transitions:
An Ironclad Strategy to Die When
and How YOU Want
CONCLUSIONS: Three hurdles
To overcome the cultural bias that food and
fluid is absolutely always required, even for
the process of dying.
To educate people that the stage of Advanced
Dementia is cruel, long, and devastating to
person, family, and society.
To overcome all obstacles that deter people
from engaging in Advance Care Planning.
Two Additional Slides
The first was shown during the discussion to
illustrate that our society does actually treat
people differently, dependent upon their
cognitive functioning.
The second was shown (without comment)
prior to the presentation, out of respect for
those who died on 9-11-2001.
LEVEL OF CONSCIOUSNESS
RIGHTS
No Impairment
All rights including: to vote, to make
contracts, to drive, to reside and to
go where one wants.
Mild Dementia
Some limitations. Examples: cannot
drive a car, cannot enter into
complex contracts.
Moderate Dementia
Minimally Conscious State
Advanced Dementia
Permanent Vegetative State
Permanent Coma
Death by Neurological or Cardiac
Criteria (“Brain Dead”)
May be kept in a locked facility with
limited rights to determine their own
daily activities and meals.
Usually must accept what others
plan for them.
REQUIRE NATURAL DYING
Apply the “Best Interest” standard:
feeding may prolong their pain and
suffering. Social justice: If we must
ration care, consider these patients
have the highest cost to benefit ratio.
(Certain exceptions are allowed. )
No rights, not even the right
to keep one’s vital organs
A choice, to die HOW, if not when
On 9-11-01, the United
Airlines Flight 93 aircraft
was a Boeing 757-200
carried 37 passengers.
In deciding HOW they
would die (given their
limited option about
WHEN), they pursued
this mission : to prevent
the plane from crashing
into the White House or
Pentagon.
After American Airlines 11
hit the top of the World
Trade Center, at least 200
people jumped to their
deaths, most from the
north towers 93st to 107th
floors. The fall lasted 10
seconds. People struck the
ground at 150 miles an
hour, ensuring instant
death upon impact—rather
than endure smoke & heat.
Contact information
Stanley A. Terman, PhD, MD
www.CaringAdvocates.org
800 64 PEACE (647 3223)
[email protected]