An Outrageous Proposal:Require Natural Dying for Patients with Advanced DementiaStanley A. Terman, PhD, MDPsychiatrist and Medical Director Caring Advocates, Carlsbad, CASept 11, 2009Center for Clinical Ethics and Humanities in Health CareUniversity 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.
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
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 exactmedical 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 stuckuntil 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 symptomsby 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?
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 carestandards 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 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.
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 needmore 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 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 withless aggressive medical care near death, earlier hospicereferrals, better patientquality 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