An Outrageous Proposal: Require Natural Dying for Patients with Advanced Dementia Stanley A. Terman,...

An Outrageous Proposal:Require Natural Dying for Patients

with Advanced Dementia

Stanley A. Terman, PhD, MDPsychiatrist and Medical Director

Caring Advocates, Carlsbad, CA

Sept 11, 2009Center for Clinical Ethics

and Humanities in Health CareUniversity of Buffalo

DisclaimersI 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 Words used to mean “outrageous”:“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 The FIVE P’s of Outrageous: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 high-tech 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.


Political: Do our laws fulfill our needs?

• Professional – For patients or physicians? Examples of clinical/strategic proposals




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

▲ ▲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.

▲



Professional: Get a doctor to sign NOW.




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.


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.)


Act: (part 3)

Specific: The new law’s exclusion about oral food and fluid is more subtle than the two-decade long, precedent-setting ruling by the New York State’s highest court headed by “Sol Wachtler,” that forbids “Substituted Judgment.”

More subtle Less understood.


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.




Personal: Essential education: Ceasing food & fluid to avoid prolonged lingering in Advanced Dementia



The outrageous press: “Death Panels”

Mischaracterize the voluntary seeking of end-of-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.

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?”




Personal: Essential education: Ceasing food & fluid to avoid lingering in Advanced Dementia

Press: Reporting truth vs supporting a political or religious point of view?


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 decision-makers 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 ResolutionConflict resolution will be modeled on the only successful protocol to handle non-beneficial “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.


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.


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).


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.

To provide clear and convincing evidence regarding your end-of-life treatment preferences, and to prevent others from challenging them… create a Living Will by sorting

My Way Cards.

An option for individuals NOW:

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 end-of-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 self-enforcing.

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 ImpairmentAll 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

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.

Advanced Dementia

Permanent Vegetative State

Permanent Coma

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. )

Death by Neurological or Cardiac Criteria (“Brain Dead”)

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]

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