Samuel B.

Casey, Managing Director & General Counsel, JUBILEE CAMPAIGN, Law of Life Project

JUBILEE CAMPAIGN, LAW OF LIFE PROJECT: OUR VISION FOR CHAMPIONING HUMAN DIGNITY AROUND THE WORLD
"Legally defending worldwide in all legal fora the right to life and dignity of the human being from biological conception until natural death in all matters where such a defense is required."

JUBILEE CAMPAIGN, LAW OF LIFE PROJECT:

1.

Establishing through lawful process the juridical existence of the human person from conception to natural death. 2. Constrain human subject experimentation within universally accepted principles governing experiments on human subjects. 3. Oppose forced abortion in all of its forms. 4. Progressively regulate and ultimately end legal protection for so-called elective abortion, whether performed surgically or chemically. 5. End direct or indirect governmental funding of abortion. 6. Defend the rights of biological mothers and children involved in surrogacy arrangements. 7. Oppose active euthanasia (mercy killing) and physicianassisted suicide 8. Defend the health care right of conscience. 9. Defend pregnancy resource centers. 10. Develop and sustain the Arm the Advocates for Life training program

The San Jose Articles

Article 1. As a matter of scientific fact a new human life begins at conception.
Article 2. Each human life is a continuum that begins at conception and advances in stages until death. Science gives different names to these stages, including zygote, blastocyst, embryo, fetus, infant, child, adolescent and adult. This does not change the scientific consensus that at all points of development each individual is a living member of the human species. Article 3. From conception each unborn child is by nature a human being. Article 4. All human beings, as members of the human family, are entitled to recognition of their inherent dignity and to protection of their inalienable human rights. This is recognized in the Universal Declaration of Human Rights, the International Covenant on Civil and Political Rights, and other international instruments. Article 5. There exists no right to abortion under international law, either by way of treaty obligation or under customary international law. No United Nations treaty can accurately be cited as establishing or recognizing a right to abortion. Article 6. The Committee on the Elimination of All Forms of Discrimination Against Women (CEDAW Committee) and other treaty monitoring bodies have directed governments to change their laws on abortion. These bodies have explicitly or implicitly interpreted the treaties to which they are subject as including a right to abortion. Treaty monitoring bodies have no authority, either under the treaties that created them or under general international law, to interpret these treaties in ways that create new state obligations or that alter the substance of the treaties. Accordingly, any such body that interprets a treaty to include a right to abortion acts beyond its authority and contrary to its mandate. Such ultra vires acts do not create any legal obligations for states parties to the treaty, nor should states accept them as contributing to the formation of new customary international law.

The San Jose Articles (cont.)

Article 7. Assertions by international agencies or non-governmental actors that abortion is a human right are false and should be rejected. There is no international legal obligation to provide access to abortion based on any ground, including but not limited to health, privacy or sexual autonomy, or non-discrimination. Article 8. Under basic principles of treaty interpretation in international law, consistent with the obligations of good faith and pacta sunt servanda, and in the exercise of their responsibility to defend the lives of their people, states may and should invoke treaty provisions guaranteeing the right to life as encompassing a state responsibility to protect the unborn child from abortion. Article 9. Governments and members of society should ensure that national laws and policies protect the human right to life from conception. They should also reject and condemn pressure to adopt laws that legalize or depenalize abortion. Treaty monitoring bodies, United Nations agencies and officers, regional and national courts, and others should desist from implicit or explicit assertions of a right to abortion based upon international law. When such false assertions are made, or pressures exerted, member states should demand accountability from the United Nations system. Providers of development aid should not promote or fund abortions. They should not make aid conditional on a recipients acceptance of abortion. International maternal and child health care funding and programs should ensure a healthy outcome of pregnancy for both mother and child and should help mothers welcome new life in all circumstances.

JUBILEE CAMPAIGN, LAW OF LIFE PROJECT:

Provide legal and public education support needed to assure that patient's right to receive care and compassion is not replaced by a doctor's license to prescribe poison or administer a lethal injection and to mobilize and guide the volunteer attorneys needed to defend disabled persons who lack the legal advocacy they need to protect their constitutional right to life, including nutrition and water, particularly in jurisdictions where futility of care laws or practices are denying patients life without due process of law.

4,000 deaths every year through euthanasia 2,700 of whom are in the early stages of dementia. It began with voluntary euthanasia. Today, around one in four are involuntary, that is, without the consent of the patient.

The Oregon Experience

The Oregon Experience (cont)1998 2009

17 page report 14 physicians (15 Rxs) Psych referrals20% EOL concerns

Autonomy
Decreased ability to

5 page report 45 physicians (85 Rxs) Psych referrals3.3% EOL concerns

Autonomy
Decreased ability to

participate in enjoyable activities Loss of dignity

participate in enjoyable activities Loss of dignity

Only place in world where legal (albeit practiced elsewhere)

One of 6 placesWA, MT, Netherlands, Belgium, Switzerland

The Oregon Experience (cont)

Academic review of six casesA Medical Perspective*
Failure to ensure palliative care alternatives Inadequacy of safeguards Emphasis on protecting physicians Deviation from accepted medical practice Inadequate monitoring

*Hendin H, Foley K. Physician assisted suicide in Oregon: a medical perspective. Mich Law Rev 2009;106: 1613-45

Why not assisted suicide?

Dangerous for patients

Pressures due to health care costs Fails to protect depressed or mentally ill Families can be left out, not notified No oversight of quality of patient care

Advocates want to expand the law Oregon model legislation is seriously flawed

National Health Expenditures

1960 5.2 % of GDP $ 148

5.2 % of GDP 1980 9.1 % 2000 13.8 % 2007 17.0 % 2021 20.0 % predicted
1980 1960

$ 148 $ 1,102 $ 4,790 $ 7,026

On average, the majority is spent within the last 6 weeks of life.

Health Care Cost Pressures/Fears

Limits on healthcare spending

OHP wont pay for chemo, radiation, surgery if

survival est. less than 5 years BUT will pay for assisted suicide as comfort care

Most expensive time of life is expendable Expensive life not as worthy

Disabled adults are concerned

Some disabled newborns euthanized in Holland

Barbara Wagners Story

64 yrs- retired school bus driver Metastatic lung cancer after 2 years remission Oncologist prescribed chemotherapy to slow cancer growth, reduce symptoms, extend her life Oregon Health Plan letter to Barbara: chemotherapy not covered, butassisted suicide drugs 100% covered ! OHP medical director: necessary to point out the options available and PAS could be considered a comfort care measure
Eugene Register-Guard June 3, 2008

Depressed or mentally ill are competent unless impaired judgment Capable used on Oregon doctor forms =

Untreated Depression

has the ability to make and communicate health care decisions to health care providers, including communication through persons familiar with the patients manner of communicating, if those persons are available

Mental health referral NOT required

NONE referred in 2007 report

58 patients seeking assisted suicide from C&C or AS doctors 15 (25%) found to meet criteria for Major Depression; 13 met Anxiety criteria None diagnosed prior to study screening test

Untreated Depression*

Conclusion: Death with Dignity Act may fail to protect some patients
*Ganzini, BMJ 2008;337:a1682

Dichotomous careMichael Freelands Story

40 year history of depression and suicide attempts diagnosed with lung cancer By mistake called Physicians for Compassionate Care (PCC), instead of Compassion and Choices, formerly Hemlock Society PCC volunteer arranged for treatment for pain, depression, and help at home PAS doctor wrote the overdose offered to refill it when he was still alive more than a year later

Michael Freelands Story (cont) Psychiatric hospital admission due to depression/SIs

Home visit during hospitalization>30+ guns, thousands of rounds of ammo removed; overdose left in home! Discharging doctor wrotewhile he probably needed home attendant care, providing additional care may be a "moot point" because he had life-ending medication Overdose doctor never addressed pain, emotional issues Because of support by PCC, Mr. Freeland ultimately decided not to die by suicide and died naturally at homealmost two years after initial overdose given!

She chose it all on the day she died

Lovelle Svart--10/28/2007

Legalizes a Shroud of Secrecy

Doctors required to falsify the death certificate - Sec. 4 (l)(ii)(B)(2): death certificate shall list the underlying terminal disease as the cause of death Sec. 15: DOH collect administratively required documentation regarding compliance, and the information may not be made available for inspection by the public

Institutionalizes Bad Medical Practice

Focus shifts away from relieving distress No peer review or medical quality oversight Absence of medical standards means that doctors who participate in good faith cannot be:

disciplined for bad practice (lose their license) expelled from their job, medical organization, or

business relationship criminally prosecuted (sent to jail) sued for medical malpractice !!!

Assisted Suicide and the Slippery Slope

This was non-voluntary euthanasia (lethal injection) No criminal charges filed Two month suspended medical license Oregonian was deceptive, this was not suicide

Painnot reason for suicide according to Oregon family members

No physical symptoms were rated higher than 2 on scale of 1-5 Most important reasons:

wanting control of circumstances of death,

dignity, and preferring to die at home concerns about independence, ability for self care and quality of life

Ganzini et al., J Gen Intern Med. 2008 Feb; 23(2):154-157

Comfort level , last week of life - before/after the law*

More comfortable before the law

More severe pain after the law

Fromme, et al. Increased family reports of pain or distress in dying Oregonians: 1996 to 2002. J Pall Med 7:431-442, 2004.

Improved hospice care because of assisted suicide?

Medicare ranks Oregon 9th in total number of hospice days of hospice utilization
Of the top five states, four have criminalized assisted suicide NO EVIDENCE legalizing assisted suicide improves end-of-life care!

Advocates hopes and dreams

The world is watching what happens in Washington We are hoping for the domino effect.

Derek Humphry, 1991, Founder of the Hemlock Society

Physician-assisted Suicide and Euthanasia can help solve the problem of rising health care costs
Derek Humphry 12/2/1998

We feel a victory in Washington is the best hope for California to have such a law.
Faye Girsh, VP of Hemlock Society of San Diego, CA, 2008

Death with dignity or Death on demand ?

The right to choose death when you want it becomes the right of other people to choose for you when you are unable. Autonomy and control by a few becomes abuse of the vulnerable many. The plan for use in exceptional circumstances becomes death on demand and the elimination of worthless undignified lives.

Questions for proponents

Why only people with 6 months to live? Why doctors?

Why just overdoses of sleeping pills--why not injection?

Should Congress allow the Controlled Substances Act to be used to allow PAS? (Gonzalez v. Oregon, USSC (2006)

Choice for physicians under attack?

In rural Washington state, law allows assisted suicide, but most doctors don't
Terminally ill patients who want to utilize a new law to end their agony often find that physicians, citing moral objections, refuse to take part. By Kim Murphy, May 7, 2009

Reporting from Kennewick, Wash. -- Stephen Wallace had watched his wife die of cancer 22 years ago, using up the morphine as fast as they could put it into her and begging for more. NoNo, he said then. I won't let this happen to me.
Stephen Wallace, a pancreatic cancer sufferer, appealed to hospitals and physicians to prescribe a fatal dose of barbiturates to him as allowed under Washington state law. None was willing and Wallace, 76, later died.

So when he was diagnosed with an advanced case of pancreatic cancer March 8, and given a few days to a few weeks to live, Wallace hoped to go quickly. He told his doctor and family that he wanted to take advantage of Washington state's new law allowing physicians to prescribe a fatal dose of barbiturates to terminal patients. His five children agreed, but his doctor balked, citing moral reservations.

Choice for physiciansunder attack?

The solution to suffering never is to eliminate the sufferer. Abdicating my roleto heal and make life betterDr. Ida Rommen Vending machine medicine offer patients adequate pain medication and reassurance.

It's not about killing people. It's about people that are going to die, but don't want to go through hell to do it. I won't let this happen to me. It's going to take time to get people educated about the law. Robb Miller

Culture of life

Culture of death

Choice for physiciansunder attack?

Eliminate false choice between sound science and moral values. releasing funding for new embryo stem cell lines (but not cloning). President Obama on stem
cells Mar 9, 2009.

Physicians may not exercise their right of conscience if that might constitute an imposition of religious or moral beliefs on patients. ACOG Committee on Ethics Opinion
No. 385: Nov, 2007

Choice for physiciansunder attack?*

In emergencyneed to provide care regardless of personal moral objections In resource poor areas providersshould practice in proximity to individuals who do not share their view (or choose a different profession?)

*ACOG Committee Opinion 385The Limits of Conscientious Refusal in Reproductive Medicine (Nov 2007)

Choice for physiciansunder attack?

Words: Let's honor the conscience of those who disagree and draft a sensible conscience clause, and make sure that all of our health care policies are grounded not only in sound science, but also in clear ethics, as well as respect for the equality...*
*Obama, ND commencement address5/17/09

Choice for physiciansunder attack?

Actions: The Obama administrationposted a notice on a federal Web site indicating its intentions to overturn the HHS provider "conscience" rule.*
*Medical News Today, March 3, 2009

It did so in March 2010!

Competing principles
Physician
Autonomy

Patient
Autonomy

Integrity
Ethical right

Access
Legal right

Independent agent
Do no harm

Fiduciary obligation
Perception of harm

Dr. Bill Toffler meets with patient Peggy Budge at an OHSU clinic. Toffler wont do abortions, physician-assisted suicide or the morning-after pill. He refuses to refer patients to other providers for those procedures, even though OHSU policy requires that he should.

Doctor should follow Doctor is right to stand up for beliefs OHSU policies

When following your conscience, remember four principles

All human life is inherently of value. No one has the right to do wrong (and its corollary). No one can serve two masters. Health professionals should:

be unabashed in advocacy for their patients

health and well-being until (natural) death. maintain integrityrefuse to participate in unethical practicesboth directly and indirectly.

Summary
Oregon model legislation is seriously flawed (despite shroud of secrecy) We have been successful at stopping/slowing dominos, but there has been Erosion of traditional medical ethic and trust Conscience protection has emerged as a critical front

Professor Timothy Maughan

Professor Timothy Maughan, Consultant Clinical Oncologist at Cardiff, says that in the last four years 3 patients had asked me for a way to end it all quickly. All three of these have been in the throes of depression at a the time and with good communication, treatment of depression and ongoing support, have changed their opinion and gone on to face their future in greater peace. Professor Maughan says a change to the law is a dreadful prospect.

In Oregon, there is a culture of doctor-shopping. The pro-assistedsuicide organisations link patients to a compliant doctor. The Oregon health department's report showed that a tiny number of doctors provide all the lethal prescriptions. Such doctors from pro-assistedsuicide organisations are hardly going to be unbiased in their "in good faith" assessments. Let us not be fooled into thinking that a second, independent doctor is a rigorous check. Dr.Shipmans cremation forms were all signed by doctors independent of him. That safeguard failed in several hundred cases. More than 90 per cent of doctors in palliative medicine in this country want nothing to do with this, as we work day in and day out with those with end-of-life diseases, on their management and care.

Prof. Baroness (Ilora) Finlay, Past President, Royal Society for Medicine Professor of Palliative Care

If youre demented, youre wasting peoples lives - your familys lives - and youre wasting the resources of the NHS.
- Baroness Warnock, The Times, October 10th 2008.

95% of the membership of the Association for Palliative Medicine of Great Britain & Ireland, which represents over 800 UK specialists in palliative care, is opposed to any change in the law

Disabled peoples lives are invariably seen as less worthwhile than those of non-disabled people. Descriptions such as tragic, burdensome and even desperate are routinely used without objection. Unless one is extraordinarily strong, this negativity impacts on the individual disabled person. If suicide were a legally and socially acceptable option, too many would succumb to this fate believing being put out of misery to be expected of them..This Bill is dangerous and threatening. I and many other severely disabled people will not perceive your support for it as an act of compassion but one founded in fear and prejudice. Jane Campbell, who has spinal muscular atrophy, Commissioner of the Equality and Human Rights Commission, now Baroness Campbell of Surbiton.

I want to challenge the assertion that the present law lacks clarity. I suggest that the present law could not be clearer than it is

You may be prosecuted if, first, there is enough evidence to sustain a prosecution and, secondly, that it is in the public interest for a prosecution to occur. What could be clearer law than that?

The House of Lords has had two full Select Committee enquiries to examine the current law. On the last occasion, the enquiry covered some 246 Hansard columns and two volumes of 744 pages and 116 pages respectively, 15 oral sessions, 48 groups or individuals giving evidence, with 88 witnesses giving written evidence, 2,460 questions asked and the committee receiving 14,000 letters. After consideration of all the issues raised, as on the previous occasion, proposals to change the law were rejected by a wide margin. When the last vote took place in the House of Commons the proposal was defeated by 91 votes to 236. The Scottish Parliament recently reached the same conclusion

Dying is not only a personal or individual affair. The death of a person affects the lives of others, often in ways and to an extent which cannot be foreseen. We believe that the issue of euthanasia is one in which the interest of the individual cannot be separated from the interest of society as a whole.
House of Lords Select Committee

Strategy

Website www.carenotkilling.org.uk

Slogan Care Not Killing

Resources leaflets/DVDs/papers Spokespeople Evidence-based research

Membership

18 Core organizations

30 Associate organizations

Core Members
Church of England ALERT Evangelical Alliance Association for Heythrop Insitute Palliative Medicine of Great Britain & Ireland Lawyers Christian Fellowship United Kingdom LIFE Disabled Peoples Council Northern Ireland CARE Hospice Association Catholic Bishops RADAR Conference of England Right to Life and Wales SPUC Catholic Union Christian Medical Fellowship

The arguments and soundbites

Unnecessary - Requests for euthanasia are extremely rare when patients needs fully met therefore we need good palliative care You can kill the pain without killing the patient Dangerous - A change in the law would place vulnerable people under pressure to request early death therefore it should not be changed for a few persistent cases The right to die can so easily become the duty to die

CNK Strategy

Highlight those with more extreme agendas Highlight positive role models Highlight abuses of Oregon/Netherlands Emphasise small numbers and public safety issues Lobby within Parliament to oppose amendment to CJ Bill

Highlight more extreme agendas

Philip Nitschke the depressed, elderly bereaved and troubled teens Ludwig Minelli suicide is a marvellous possibility

Baroness Warnock people with dementia have a duty to die

Highlight positive role models

Matt Hampson (Tetraplegia) Michael Wenham (MND) David Morris (SMA)

Highlight abuses

Netherlands Involuntary euthanasia and Terminal sedation Lack of convictions Groningen protocol Oregon Patients with treatable depression Feeling a burden Funding of assisted suicide but not treatment

Switzerland Body bags. Parking lots, Lax criteria (depressed and bereaved people)

Lobbying Parliament

Shoot the crocodile nearest the boat (ie. Target specific amendment) Target Peers/MPs who are onside or undecided Emphasise medical and disabled peoples opinion

The Law Lords Purdy Decision

Five Law Lords adopted the ECHR's construction of Article 8(1) of the European Convention 71 holding that the decision to kill human life via suicide was a human right. Thus, each Law Lord concluded that Purdy possessed a human right under the European Convention to decide to kill herself. After the Law Lords held that Purdy had that human right, it further concluded that the assisted suicide prohibition in the UKs Suicide Act constituted an interference with that right. Because the Government failed to provide an offense-specific prosecution policy for assisted suicide, the Law Lords further found that such interference violated Article 8, paragraph 2 of the European Convention *42 because the Government's interference with the right was not in accordance with the law.

The Prosecutors Post-Purdy Guidelines In deciding not to protect human life against an assisted suicide killing, prosecutors
now may arbitrarily rely upon ambiguous provisions in the guidelines to refuse to prosecute a suspect who assists a suicide. Under the guideline's factors: [a] prosecution is less likely to be required if: 1. the victim had reached a voluntary, clear, settled and informed decision to commit suicide; 2. the suspect was wholly motivated by compassion; 3. the actions of the suspect, although sufficient to come within the definition of the offence, were of only minor encouragement or assistance; 4. the suspect had sought to dissuade the victim from taking the course of action which resulted in his or her suicide; 5. the actions of the suspect may be characterized as reluctant encouragement or assistance in the face of a determined wish on the part of the victim to commit suicide; 6. the suspect reported the victim's suicide to the police and fully assisted them in their enquiries into the circumstances of the suicide or the attempt and his or her part in providing encouragement or assistance.

I have set before you life and death, blessings and curses. Now choose life, that you and your children may live.

- Deuteronomy 30:19

So God created man in his own image, in the image of God he created him; male and female he created them Genesis 1: 27

QUESTIONS & COMMENTS

THE CASE FOR OUR LIVES: A CAUSE FOR PRAYER

A Concluding Prayer for the Courage to Champion the Cause of Bioethics with Human Dignity Around the World

(from Ephesians 6:10-18)

Samuel B. Casey, Managing Director & General Counsel, JUBILEE CAMPAIGN, Law of Life Project