Testimony of the New York Civil Liberties Union before The New York State Assembly Committee on Health regarding Assembly Bill A.2383-A (Paulin), Medical Aid in Dying Act

The New York Civil Liberties Union respectfully submits the following testimony on Assembly Bill A.2383-A, the “Medical Aid in Dying Act.”  The NYCLU, the New York State affiliate of the American Civil Liberties Union, is a not-for-profit, nonpartisan organization with eight offices across the state and over 190,000 members and supporters. The NYCLU defends and promotes the fundamental principles and values embodied in the Bill of Rights, the U.S. Constitution, and the New York Constitution through an integrated program of litigation, legislative advocacy, public education and community organizing.

The NYCLU was a member of the New York State Task Force on Life and the Law and participated in the preparation of that Task Force’s 1994 Report, “When Death is Sought: Assisted Suicide and Euthanasia in the Medical Context” (the “1994 Task Force Report”).  The NYCLU was also actively involved in support of  the New York State Family Health Care Decisions Act, N.Y. Public Health Law §2994-b, and the Health Care Decisions Act MR, N.Y. Surrogate Court Procedures Act §1750-b. The NYCLU, with others, initiated, and continues as plaintiffs’ counsel in, the landmark Willowbrook class-action litigation on behalf of people with intellectual disabilities, a class action that was in the vanguard of the civil rights movement for people with disabilities.  

The NYCLU also participated as amicus curiae in Myers v. Schneiderman, 30 N.Y.3d 1 (2017). In Myers, in the context of the State defendants’ motion to dismiss and without a fully developed record, the New York State Court of Appeals has rejected plaintiffs’ claim that a person has a fundamental constitutional right to medical aid in dying in New York State, concluding that “plaintiffs’ claims are better addressed to the Legislature.”

Introduction

The proposed New York Medical Aid in Dying Act (A.2383-A/S.3151-A) would allow mentally competent, terminally ill individuals with a prognosis of six months or less to live to request a prescription for medication from their physician that they can ingest at a time of their own choosing – or not at all – should they make the determination that they wish to bring about their peaceful death.

For these terminally ill patients, life will soon end.  Such patients have typically fought long and hard to cure their illnesses, enduring surgery, chemotherapy, radiation, or other aggressive medical interventions. The lives of such patients are being taken by the inexorable progression of their terminal diseases. Medicine cannot change that fact.  At life’s end, these patients want simply to exercise control over how the inevitable will occur.

The NYCLU supports the right of a competent adult who is terminally ill to choose the time, place and manner of her impending death and to obtain the assistance of a willing, and medically qualified, physician in carrying out her decision. The NYCLU believes that the right to receive or continue medical treatment or to have treatment withheld or withdrawn, consistent with a person’s expressed wishes or best interests, is based upon the fundamental civil liberties principles of autonomy and self-determination, privacy, liberty, and the freedom of thought and religion.

A person with decisional capacity has a fundamental right to make her or his own health care treatment decisions.  It has long been recognized in New York that this includes the right to decide to receive or continue treatment, or to have treatment, including life-sustaining measures, withheld or withdrawn. And notwithstanding the Court of Appeals determination to the contrary in Myers, the NYCLU also believes that the liberties protected by the Fourteenth Amendment of the federal Constitution and by Article I, § 6 of the New York State Constitution include the liberty to make personal and intimate decisions not just about how to live but also about how to die.

If a patient is suffering from a terminal illness and meets the stringent eligibility requirements found in this legislation, it should not be the role of government to tell a patient that he or she may not make a choice to alleviate his or her suffering.  The question of how much suffering to bear before death arrives is intensely personal, turning on values and beliefs an individual has developed over the course of a lifetime. The exercise of this right is as central to personal autonomy and bodily integrity as rights safeguarded by the well-established federal and state decisions relating to marriage, family relationships, procreation, contraception, child rearing and the refusal or termination of life-saving medical treatment.

But an individual’s rights to autonomy and equality also protect that individual’s decision not to take steps (by action or inaction) to accelerate the end of life, where there is the type of terminal diagnosis described above. Any mechanism established by the government to make it possible for terminally ill adults to exercise a right to accelerate death and obtain a competent physician’s assistance in doing so should also seek to assure that the right to continue to live with appropriate care and without accelerating death, and indeed sometimes delaying death, is well protected.   In particular, to ensure that a decision of a terminally ill competent adult to accelerate death, including with aid, is fully informed and not coerced, civil liberties interests require appropriate protection for persons and groups seen as or in fact vulnerable because of impairment, discrimination, disadvantage or stigmatization.

The NYCLU recognizes that disparities in access to health care fall with particular burden on people with  disabilities, the economically disadvantaged, the un- and under-insured, racial and ethnic minorities, elders, immigrant communities, and the LGBTQ communities. Implementation of any policy permitting aid in dying consistent with civil liberties standards must recognize the necessity of addressing discriminatory stereotypes and ensuring equality of access and protecting against coercion.

Thus, the NYCLU believes that civil liberties interests require, to an appropriate degree of certainty, that the individual seeking such assistance is in fact making a competent, autonomous and voluntary decision and not making a decision as result of any outside pressures, including economic pressures, contrary to such interests.[1]

Accordingly, the NYCLU supports A.2383-A because the proposed legislation mandates that such decisions are fully informed; that such decisions are voluntary and free from discriminatory stereotypes and coercion; that there are system guidelines for permitting such assistance to ensure the process (i) works fairly, non-discriminatorily, and appropriately, (ii) does not lead to unintended consequences, and (iii) is not  so onerous that it effectively defeats or discourages the exercise of the right of terminally ill adults to accelerate death and to obtain a competent physician’s assistance in doing so.

A.2383-A Follows Established Process and Sets Strict Eligibility Criteria and Core Safeguards

A.2383-A is modeled closely after other medical aid in dying laws, including those passed in Oregon (1994, ballot initiative),[2] Washington (2008, ballot initiative),[3]  Vermont (2013, legislation),[4] California (2015, legislation),[5] Colorado (2016, ballot initiative),[6] Hawaii (2018, legislation)[7] and the District of Columbia (2016, legislation).[8]  And, in Montana, medical aid in dying was permitted by that state’s Supreme Court in 2009.[9]   Taken together, these jurisdictions have a combined forty years of experience and data collection and have demonstrated that medical aid in dying is a safe, ethical and trusted medical practice.

Oregon’s Death With Dignity Act was enacted in 1997 and has never been amended or expanded.   The five states and the District of Columbia that have since authorized medical aid in dying through legislation have modeled their bills after Oregon’s.  Medical practitioners in the State of Montana follow the same protocol established in the Oregon statute.   Each state’s regulatory and procedural requirements are slightly different, but all of the legislation includes the same strict eligibility criteria as well as guidelines that meet the highest standard of care for the medical practice of aid in dying as described in clinical criteria published in the Journal of Palliative Medicine.[10]

A.  Decisions about Death Are Fully Informed.

Under A.2383-A, to be eligible for aid in dying medication, an adult must have terminal illness or condition that is incurable and irreversible with a prognosis of six months or less to live.  The person seeking medical aid in dying must be mentally capable of making his or her own healthcare decisions.   Health providers, family and friends must not influence their decision to request or ultimately ingest the medication.   

In addition to the strict eligibility criteria, A.2383-A would establish core safeguards including that the attending physician must inform terminally ill adults requesting medical aid in dying about other end of life options including the feasible alternatives or additional treatment opportunities including but not limited to palliative care and hospice care as well as the range of options appropriate to the patient; the prognosis, risks and benefits of the various options; and the patient’s legal rights to comprehensive pain and symptom management at the end of life.  The attending physician must also notify the patient requesting medical aid in dying of the restriction that “no person other than the patient may administer the medication” and of the importance of informing the patient’s family of the patient’s decision to use medical aid in dying.

B.  Decisions about Death Are Deliberate and Free from Coercion.

A.2383-A contains safeguards that protect against abuse and coercion. A.2383-A requires that a patient is eligible to make a request for aid in dying medication only if the patient has expressed the request voluntarily, of the patient’s own volition and without coercion.

Like all of the existing medical aid in dying laws, A.2383-A requires that a consulting physician confirm both the terminal diagnosis, prognosis of six months or less to live, and mental capability of the terminally ill individual requesting this option.   The consulting physicians must inform not only the attending physician of his or her findings, but also the patient.

Moreover, if either the attending or consulting physician is unable to determine whether the individual has mental capacity in making the request, A.2383-A requires referral to a mental health professional.  A mental health professional must then evaluate the individual and ensure that they are capable of making their own healthcare decisions prior to a prescription being written.  Both the attending and the consulting physicians have access to the mental health professional’s written report, no matter which doctor makes the referral.

In addition, the terminally ill adult must make a verbal and a written request to their doctor that is signed by witnesses.  A.2383-A also mandates that at least one of the witness is not an owner, operator, employee or “independent contractor” affiliated with a healthcare facility where the patient is receiving treatment. The witnesses must understand the legal requirements and penalties associated with violating those requirements.

If there is the need for an interpreter due to speech, hearing or vision disabilities, A.2383-A mandates that there be appropriately qualified interpreters to serve as language interpreters and/or as interpreters for those living with a disability.  A.2383-Aalso provides that an employee or an independent contractor with a healthcare facility where the patient is receiving treatment can serve as an interpreter only if they are qualified to do so, if it is part of their job description, and if they are requested to do so by the patient.

The attending doctor must offer the individual the opportunity to withdraw their request at any time or choose not to take the medication.  And, like all of the medical aid in dying laws, A.2383-A requires that the patient must self-ingest the medication to ensure that that the patient, and only the patient, remains in control at all points of the proceeding.

C.  A.2383-A Ensures that the Medical Aid in Dying System Works as It Is Supposed to Work and Does not Lead to Unintended Consequences.

Like all of the existing medical aid in dying regimens currently in place in this country, A.2383-A requires the New York State Department of Health to review medical records and to collect information about the patients and physicians who would participate in medical aid in dying and to publish an annual statistical report regarding utilization and compliance with the proposed legislation.  The utilization and compliance review will provide reliable data to evaluate whether patients, particularly patients most vulnerable to coercion or discrimination, are making informed and un-coerced decisions to hasten death.

The Disability Rights Community Critique of Medical Aid in Dying

The concerns voiced by the disability rights community[11] raise significant autonomy concerns which merit serious consideration.  Consideration of these concerns have clearly informed the formulation of rules for medical aid in dying.  Briefly summarized, the NYCLU understands the concerns to be as follows. 

The first concern expressed is that the decision to end one’s life will be pressured or coerced.  That concern is heightened by the fact that individuals who have been told they have only a few months to live are often in a physically and emotionally vulnerable state. 

A second concern is that the decision to end one’s life will be a premature reaction to a terminal diagnosis based on negative assumptions about living with disabilities.  That view may be held by the patient, or the patient’s family and friends.  Moreover, it is also a view that is disproportionately held by medical professionals, who may have an outsized influence on a patient’s decision.  This view is in fact contrary to the experience of many who have lived with disabilities for years, and to the experiences of many specifically facing a terminal illness.   

A third concern is that terminally ill patients may choose aid in dying because they fear a slow and painful death, which they may believe is the only other alternative simply because they have not been offered palliative care or it is not available. 

Finally, there is concern that a broad embrace of aid in dying will have a powerful and negative ripple effect that makes discrimination against people with disabilities harder to see and easier to accept by reinforcing the still strong social notion that people with disabilities lead less than full lives.

The NYCLU believes that A.2383-A has taken account of these serious concerns in formulating the proposed legislation.  It is also important to acknowledge that certain bedrock principles, grounded in concepts of personal and medical autonomy, underlie both the disability rights movement and the end of life rights movement.  The disability rights movement is founded on an appropriate and outright rejection of the “medical model of disability.”  In most circumstances the disability rights community assumes a “rights based model of disability.”  Under the rejected medical model construct, any illness or disability that is a physical condition intrinsic to the individual (i.e. part of that individual’s own body) is deemed to reduce the individual’s quality of life and to cause clear disadvantages to the individual.  By contrast, the rights based model of disability conceptualizes the notion of “disability” as a socio-political construct within a rights-based discourse.

Ironically, the opponents of this proposed legislation have rejected the rights based model in this case.  Refusing to allow the choice to exercise a right to medical aid in dying to all New Yorkers undermines the fundamental principles of individual control and self-determination, the critical autonomy and liberty rights which both adherents of the disability rights movement and the medical aid in dying movement are committed to supporting and advancing. 

No Evidence of Harm

As noted above, the NYCLU supports medical aid in dying because we believe that terminally ill patients should have the right to determine the timing of their death as a basic aspect of constitutional liberty, provided there are appropriate safeguards to ensure that the decision is fully informed and voluntary to protect the liberty interest in life. 

The NYCLU firmly believes that there is value in having the medical aid in dying process transparent and regulated.  States with bans on aid in dying have created and tolerate a gray market where people with the resources can find sympathetic doctors to help them die peacefully,[12] while other patients try self-induced and sometimes unsuccessful methods of killing themselves.  Bringing the construct of aid in dying out of the shadows creates an open process and gives patients with terminal illnesses peace of mind knowing that they can choose the timing of their own death.  For many, that may be enough.  In the most well documented regimen in place in Oregon, Oregon’s data demonstrates that approximately one third of people in Oregon who obtain lethal medication generally never ingest it.[13]

There is no evidence of any harm to people with disabilities in those locales where medical aid in dying is available.  Years of data demonstrate that aid in dying has not produced any of the feared harms posited by the 1997 Supreme Court opinion in Washington v. Glucksberg, 521 U.S. 702 (1997), or indeed by the New York State Task Force on Life and the Law’s 1994 Report.    

All of the data reported from Oregon over the past nineteen years has shown that such concerns are unwarranted.  There is no evidence that vulnerable groups are targeted by caregivers, family members or physicians who utilize aid in dying to hasten the deaths of vulnerable, terminally ill patients.   It is not the advanced elderly who most avail themselves of aid in dying: most are aged sixty-five or older with the median age at death 73 years.  Those seeking aid in dying are generally highly educated: 50% hold bachelor’s degrees, about double the average in the general population. The patients are well insured: 99.2% of patients in 2016 had health insurance to pay for continued aggressive treatment until death [in prior years, between 97% and 100% were insured].   During 2016, five patients were referred for psychological/psychiatric evaluation.  The patients seeking aid in dying, in Oregon, are predominantly white.[14]   During 2016, no referrals were made to the Oregon Medical Board for failure to comply with DWDA requirements.

The Glucksberg Court was also concerned that permitting patients to choose aid in dying might start “down the path to voluntary and perhaps even involuntary euthanasia.”   Id. at 732.  However, there is no evidence that aid in dying has been utilized in any way other than in accordance with the standard of care developed in Oregon and the other states permitting the practice: the practice is strictly limited to terminally ill, mentally competent patients who are able to self-administer the medication. 

Conclusion

The NYCLU supports A.2383-A because we believe all people should have the liberty to make personal, intimate decisions not just about how to live but also about how to die. We further believe this bill includes appropriate safeguards to ensure that any decision to seek aid in dying is fully informed, voluntary, and not used to further discrimination against people living with disabilities.

The NYCLU understands that some people will not even contemplate the choice offered by medical aid in dying because their religious beliefs or moral understanding do not permit it. And no one – no doctor, hospital, institution or individual – can be compelled to participate in another person’s choice of medical aid in dying. A.2383-A affords conscience protections to such persons and institutions.

The NYCLU supports the rights of people living with disabilities, including their right to live full lives and to make their own decisions about their bodies and lives.   A.2383-A includes essential safeguards that we believe will ensure that medical aid in dying is only one of many options for patients facing the end of life and that it is not used to discriminate against people living with disabilities.

At bottom, it is the NYCLU’s position that no person should be able to deny to another the option to choose medical aid in dying. No person should presume to dictate an agonizing death, or any particular sort of death, for another human being. Decisions about end of life care are deeply personal. The right to individual autonomy when making end of life decisions includes the decision to seek physician-assisted aid in dying, as well as the decision to continue living.  Each terminally ill person should have the right to make their own decisions about how to spend their final days and how to face death.

Passing this bill will not bring an onslaught of aid in dying requests.  As noted above, in 2016, 204 people terminally ill Oregonians received prescriptions and, of that number, 133 actually took the prescribed medication to bring about their deaths.

We cannot calculate the suffering that was alleviated for those who chose to use the medication. We cannot quantify the peace of mind afforded everyone who obtained a prescription, whether they used it or not. We cannot know how many people were comforted merely by the knowledge that the option existed. But we can act to help the residents of New York State in the same way.

Thank you for the opportunity to provide testimony today.