Medical Aid in Dying – Written Testimony NYS Assembly Health Committee

ASSEMBLY COMMITTEE ON HEALTH
HEARING ON MEDICAL AID IN DYING
HELD ON MAY 3, 2018

This written testimony is submitted jointly by the Bioethical Issues, Health Law, and Science and Law Committees (respectively the “Committees”) of the New York City Bar Association (“City Bar”) concerning the Medical Aid in Dying Act, A.2383-A/S.3151-A NY Leg. Sess. (2018), amending A.2383/S.3151 NY Leg. Sess. (2017).

The City Bar led a process of holding forums in 2016-2017 and reviewing information presented by parties on all sides of the debate concerning Medical Aid in Dying (“AID”) and proposed policy-making in New York State. The City Bar issued a Commentary on the 2017 legislative proposal, which can be found on the City Bar web site.[1]   The 2017 Commentary is appended, and we would ask that the 2017 Commentary be incorporated into this City Bar written testimony and made part of the record.

We turn now to the 2018 bill as it has been amended since the submission of our 2017 Commentary (the currently pending bill is referred to herein as the “AID Bill”). 

At the outset, the AID Bill addresses certain concerns we identified in our June 2017 Commentary. In particular, we commend the bill sponsors on making changes to the provisions on interpreters, including provisions to ensure:

• that those who require an interpreter due to speech, hearing or vision disabilities have access to medical aid in dying (“AID”), and that interpreters in each category, those who serve as language interpreters and those who serve as interpreters for those living with a disability, have the appropriate qualifications for serving as such. The amendments also strengthen the Interpreter’s Declaration in a number of other critical ways, including adding language to the attestation about “impartial and accurate” translation, and requiring the interpreter to provide an ID number or Agency name, as well as the native language spoken by the interpreter; and
• that an employee or an independent contractor with a health care 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.

We also acknowledge several other amendments that strengthen procedural safeguards in the AID Bill, and may help to prevent potential abuse to the extent such type of individual-level safeguards may be effective in reducing risk of abuse, including:

• clarifying that the determination of “capacity” refers to the capacity to make an “informed decision” (as defined) specifically about requesting and obtaining a lethal medication for self-administration;
• requiring a patient to affirmatively request AID “of his or her own volition, and without any coercion,” after being informed about all other appropriate treatment options, including palliative care and hospice;
• defining “terminal illness or condition” as one that has been medically confirmed by two doctors (See also Recommendation 3 herein below, concerning deletion of “or condition” from defined term);
• requiring both doctors to confirm capacity and informed consent;
• requiring referral to a mental health professional if either doctor believes the patient may lack capacity;
• requiring any mental health determination to be forwarded to the consulting physician;
• requiring the doctor to inform the patient that he or she may rescind the request at any time; and
• providing for notification to family members.

I.  PROPOSED ADDITIONAL AMENDMENTS TO AID BILL

Although the above-referenced amendments are commendable, we believe that additional amendments can and should be made to improve upon the AID Bill. 

a. Section 2899-d. “Definitions.”:

1. Section 2899-d[5] – “Health Care Facility”; Recommendation: Include “Hospice” in the definition of “Health Care Facility.”

Article 40 (“Hospice”) of the New York Public Health Law defines “hospice” as “a coordinated program of home and in-patient care which treats the terminally ill patient and family as a unit, employing an interdisciplinary team acting under the direction of an autonomous hospice administration.”  Public Health § 4002.  A hospice must receive a Certification from the New York State Department of Health to operate and provide hospice care, whether in a hospice residence or at the patient’s home.

Proposed Section 2899-d[5] in the AID Bill limits the term “health care facility” to “a general hospital, nursing home or residential health care facility as defined in section twenty-eight one hundred one of this chapter.”  We recommend that “hospice” be added to the definition of “health care facility”, for the following reasons.

Proposed Section 2899-k in the AID Bill (“Form of written request and witness attestation”) provides that least one of the witnesses to a patient’s request for medication must attest that he or she is “not … an owner, operator, employee or independent contractor of a health care facility where the person is receiving treatment or is a resident.”  If hospices are excluded from the Bill’s definition of “health care facility,” the witness conflict of interest provision would not apply to protect hospice patients.

There is no reason why general hospital patients and residents of nursing homes and residential health care facilities should receive protection from a witness’ conflict of interest, but not hospice patients. Under New York law, a hospice patient must have a “terminal illness” as defined in Public Health Law § 4002 (“one year or less if the illness runs its course”); hospice patients as a group necessarily include those who would have a “terminal illness or condition” as defined by proposed Section 2899-d[17] in the AID Bill, i.e. “an incurable and irreversible illness or condition that has been medically confirmed and will, within reasonable medical judgement, produce death within six months.” It is more likely that hospice patients would have a terminal illness or condition than hospital patients or residents in a nursing home or residential health care facility.

Oregon’s “Death with Dignity Act” (Chapters 127.800 et seq. of the Oregon Revised Statutes) uses the term “health care facility” in Section 2.02 (Ch. 127.810), “Form of the Written Request”, in providing that one witness may not be “an owner, operator or employee of a health care facility where the qualified patient is receiving medical treatment or is a resident.” However, the Oregon law does not define “health care facility” and thus does not exclude hospices.[2]

We recommend that proposed Section 2899-d[5] in the AID Bill be amended to state: “Health care facility means a general hospital, nursing home or residential health care facility as defined in section twenty-eight one hundred of this Chapter or a hospice as defined in section four thousand of the Public Health Law.”

2. Section 2899-d[11] – “Mental Health Professional”; Recommendation: Clarify “Mental Health Professional.”

The AID Bill uses a very broad definition of mental health professional and one that is inconsistent with other parts of New York law, particularly with the Family Health Care Decisions Act (“FHCDA”).[3]  Patients are referred to mental health professionals by the attending or consulting physician when there is a belief that the patient may lack capacity.  Mental health professionals are responsible for evaluating a patient to determine whether the patient has capacity to make an informed decision to request and obtain medication that the patient may self-administer to end the patient’s life.

The definition of mental health professional includes not only a licensed physician or psychologist, but a nurse practitioner and physician assistant as well.  Moreover, while we recognize the desire to provide AID options in more rural areas of the state, the AID Bill, in contrast to the FHCDA, does not specify that the attending or consulting physician must be board certified or eligible in the field of psychiatry or list the specific qualifications that any of the other identified professionals would need in order to be able to make such a determination. This vagueness could lead to confusion and inconsistent application of the determination of whether a patient has the capacity to receive medical AID.

Accordingly, we recommend that the AID Bill be amended to elevate the credentials and qualifications of the medical professionals involved in the AID process.  Specifically, whenever the attending or consulting physician believes that the patient may lack capacity, then either the physician or mental health professional who reaches a conflicting decision and finds capacity should be required to possess, at a minimum, the FHCDA’s credentialing and qualifications requirements for determining lack of capacity under the FHCDA[4] — at the very least, in the case of any patient with a history of mental illness or any developmentally disabled patient.

3. Section 2899-d[17] – “Terminal Illness or condition”; Recommendation: Limit AID to Patients with “Terminal Illness.”

The AID Bill would extend the authority to provide AID to persons who have a “terminal illness or condition” with a life expectancy of 6 months or less.  Adding the disjunctive, “or condition”, introduces a disturbing ambiguity as to what condition, other than a “terminal illness”, would then allow a physician to prescribe lethal medication. 

We understand that “terminal condition” is also tethered to a life expectancy of 6 months or less.  However, “terminal illness” should sufficiently describe a patient’s health status when AID could be appropriately offered.  Notably, “terminally ill” is the term used to delineate the authority to provide hospice care to end-of-life patients.  Public Health Law § 4002.   Moreover, “illness” more aptly denotes disease, sickness and suffering; by contrast, “condition” is vague and amorphous. 

If there is no intent to extend the reach of AID beyond the terminally ill, then the addition of “or condition” would be mere surplusage that could only create confusion.  If however the intent is instead to somehow broaden the reach, that amendment would not only create confusion, it could also increase the risk of abuse by the unscrupulous purporting to act under the guise of treating a “terminal condition” that is something other than a terminal illness. 

Whatever the intent may have been for adding “or condition”, the fact remains that “condition” is not a separately defined term in the AID Bill, leaving medical practitioners with no understanding as to its reach or application.  Adding the phrase to the statute would only create confusion and ambiguity on the part of physicians being asked by a patient to prescribe a lethal medication, when the overarching legislative goal should be clarity given the profound consequences of their decisions. 

To ensure clarity, we recommend that the AID Bill be amended to revert to the term used in the original bill, “terminal illness,” and to delete the disjunctive, “or condition,” from the definition section and other relevant provisions of the bill.

b. Section 2899-e. “Request Process”

1. Section 2899-e[3](b)(iii) – the Declarations of Witnesses; Recommendation: Enhance Protections Against Witness Conflicts.

The AID Bill provides that no more than one of the two individuals required to witness a patient’s written request for AID may be an owner, operator, employee or independent contractor of a “health care facility” where the patient is receiving treatment or resides.  As we understand, this provision is designed to prevent both witnesses from having an actual or potential conflict of interest in hastening the patient’s death, for financial or other reasons.

However, “health care facility” as currently defined in the AID Bill is limited to a hospital or nursing home, and does not include any other residential setting such as an assisted living residence or other institution, where the patient may be residing and where similarly a conflict of interest could arise.  Nor does it preclude as a second witness someone who may be employed by or affiliated with a managed care or health plan or a home care agency that is caring for the terminally ill patient in a community setting. 

At the very least, as noted earlier, the definition of “health care facility” should be amended to include a hospice, a likely setting for the care of the terminally ill.  Moreover, the Legislature should consider broadening the protections against witness conflicts of interest to other health care settings or arrangements. 

c. Section 2899-q. “Reporting”           

1. Recommendation: Strengthen Regulatory Oversight and Reporting. 

The AID Bill requires the Department of Health to furnish an annual report on utilization and compliance with the requirements of the AID Bill.  In our view, the level of Department of Health oversight is too limited, especially in light of the risk of coercion and abuse, particularly among vulnerable populations.   The rationale for more robust oversight is simple: when lives are being foreshortened with AID, however compelling the reasons may be in most cases, it is of vital public interest to ensure that compliance with the statute is broad-based, and that instances of non-compliance – especially when professional abuse or coercion of the terminally ill is evident – do not fall below the radar. 

The legislation does require the Department of Health to review a “sample” of AID patient records, and to promulgate regulations establishing a process for physician reporting of utilization and compliance data to the Department on a confidential basis.  Yet the AID Bill does not specify how large a sample size of AID records the Department will actually review, or how the Department of Health would go about collecting the sample.  As such, there would be no assurance that the sample will be sufficiently robust for the Department to draw any reliable conclusions about compliance with the statute. 

More fundamentally, a sample review – whatever the size or parameters – will not identify all instances of non-compliance nor enable the Department to even detect patterns of non-compliance.  For instance, a more comprehensive review of AID data may reveal to the Department a concentration of AID being provided by certain physicians or at certain institutional settings, warranting further investigation and possible enforcement action. 

Accordingly, in order to better inform the regulatory process, the AID Bill should be amended to require the Department of Health to undertake a rigorous review or analysis of all or substantially all of the deaths associated with AID.  

To further enhance oversight, the Department should also be required to directly furnish its annual reports to the Legislature, in addition to the posting requirement included in the AID Bill.  In its annual report, the Department should discuss compliance with the AID statute generally, and specifically identify and address any instances (subject to patient confidentiality) or patterns of non-compliance, especially those involving suspected abuse of the terminally ill. 

The Department should also review and address in its annual report, the experience of institutional “ethics review committees” in connection with their role in the AID decision-making process, as we have recommended below.  (See Recommendation: “Provide a Role for Institutional Ethics Committee”.) 

Likewise, the Legislature should consider providing a sunset provision in the legislation.  A sunset clause would require the Legislature — prior to renewing the AID statute — to look at New York’s experience with AID and affirm that the statutory safeguards in place are effective, the requirements are being faithfully observed, and AID is not being abused. 

II.  ADDITIONAL RECOMMENDATIONS

a. Recommendation: Codify Legislative Intent.

If the intent is not to authorize a surrogate or guardian to request AID on behalf of a terminally ill individual — notwithstanding a surrogate or guardian’s otherwise broad powers conferred under the Family Health Care Decisions Act (“FHCDA”) or Article 81 of the Mental Hygiene Law — the legislation should say so, explicitly, so as to leave no ambiguity or inconsistency.  Incorporating this understanding into positive law would also send the loud and clear message to the public that any attempt to use the cover of AID, by unauthorized actors, will not be tolerated. 

b. Recommendation: Maintain Stringent AID Safeguards.  

At a minimum, the AID Bill should incorporate the more robust review processes provided for resolving conflicts in medical decision-making under the FHCDA, in particular, to the extent there is a conflict among the physicians and the mental health professional concerning the patient’s capacity, either in support of or against the patient’s request for AID.  In so requesting, we do not believe however that the AID Bill should be structured in “parity” with the FHCDA.  Rather, the AID Bill should include appropriate FHCDA protections and provide the additional safeguards noted above.[5]

c. Recommendation: Mandate Offering Palliative and Hospice Care Counseling.  

The AID Bill requires the physician to discuss “the feasible alternatives and appropriate treatment options, including but not limited to (1) information and counseling regarding palliative and hospice care, and end-of-life options appropriate to the patient . . . ; and (2) information regarding treatment options appropriate to the patient, including prognosis, risks and benefits of the various treatment options.”  With this amendment, the AID Bill improves upon the original bill, but does not go far enough to ensure that the terminally ill patient is fully informed of the benefits and resources available for hospice or other forms of palliative care, in lieu of AID. 

Pursuant to the Palliative Care Access Act (Public Health Law § 2997-d), hospitals, nursing homes, home care agencies, and special needs or enhanced assisted living residences are required to: (1) provide their terminally ill patients with counseling as well as information about options for palliative care, including hospice care, and any associated pain management services; and (2) “facilitate access to appropriate palliative care, consultations and services, including associated pain management consultations and services, including but not limited to referrals consistent with patient needs and preferences.” We submit that all terminally ill patients considering AID — regardless of their residential setting, be it a congregate setting or a home in the community — should be offered robust palliative care counseling and access to hospice and palliative care to ensure that AID does not become the “default” option to their continued suffering.

Accordingly, the AID Bill should require physicians and all other health care professionals providing AID to terminally ill patients to furnish information and counseling on palliative care options and facilitate access to such services, at a minimum, to the same extent required of certain health care providers under the Palliative Care Access Act, but optimally to include access to palliative care providers in all settings.

d. Recommendation: Provide a Role for Institutional Ethics Committees.

New York health care facilities — including hospice agencies — have ethics review committees (“ERCs”) established pursuant to the FHCDA as amended.  The AID Bill should provide a role for ERCs in the AID process.

First, the AID Bill should require each ERC, or a delegate of the ERC, to expeditiously review any request for AID at the point that a prescription for lethal medication is being written.  Such a review, however, should be limited to ensuring that the statutory standards for AID have been met, and would not call for a de novo review of the underlying professional medical determinations made before any given prescription is written.  To monitor this aspect of the AID statute, we further recommend that the Department of Health be required to address, in its annual report to the Legislature, the experience of ERCs in connection with AID.  (See earlier recommendation concerning “Reporting”). 

Second, as discussed earlier, the AID Bill should incorporate the more robust review processes provided for resolving conflicts in medical decision-making under the FHCDA, in particular, to the extent there is a conflict among the physicians and the mental health professional concerning the patient’s capacity.  ERCs can play a role in resolving such conflicts.

Third, similar to the FHCDA, ERCs should be available whenever an attending or consulting physician or mental health professional requests a consultation with the committee, at any time in the AID process.  Having this option may increase support for AID among medical professionals.

Going forward, we stand ready to work collaboratively with the Legislature and assist in an analysis of the ways in which the ERC process could be utilized for the benefit of both medical professionals and patients during the AID process.

e. Recommendation: Continue the Unfinished Business of Redressing Inequities in End-of-Life Care.

The AID Bill alone cannot, and does not, resolve all of the concerns raised in our July 2017 Commentary, which we will not repeat in this Statement.  However, we highlight below our most important and remaining concerns:

• the inequitable access to health care, and specifically to the other “feasible alternatives and appropriate treatment options, including . . . palliative and hospice care” that a physician would be required to discuss with an end-of-life patient seeking AID;[6]
• the structural barriers to equal treatment, including among more vulnerable, elderly and marginalized dying persons;[7] and
• the lack of access to mental health services.[8] 

If the “alternatives” that a physician is bound to discuss with an end-of-life patient are not viable options to a patient from a medically underserved community, then practically speaking that patient will be faced with only two stark options: continued suffering or a hastened death.  As AID advocates have noted, in Oregon most patients who elect aid in dying — 90.9% — are hospice patients.  If whole swaths of our population do not have meaningful access to hospice care or palliative care,[9] it is highly unlikely that they will have any meaningful opportunity to choose medical AID either. 

It has been argued that despite societal inequities in health care, AID should still be an additional end-of-life option to those able to access all of the alternatives.  However, whatever the rationale being advanced for AID, making another end-of-life option available to a select few does not justify ignoring the persistent and pervasive inequities in access to end of life care brought to the fore with consideration of this legislation.  Otherwise, AID will be yet another manifestation of the health care inequality separating the privileged strata among New York citizens from the less fortunate.  This is not idle nay-saying:  we know from Oregon’s experience that those seeking AID are, by and large, white and highly educated.  There is no reason to assume that such a disparity would not manifest in New York as well, perhaps even to a greater extent. 

Likewise, access to mental health services is critical to ensuring that a terminally ill patient makes any decision to request AID, uncompromised by a mental infirmity that may not be apparent even to the trained eye of a physician. 

III.  CONCLUSION

In short, there is much unfinished business that needs to be done, regardless of the fate of the AID Bill.  We therefore urge the Legislature to work toward ameliorating these inequalities.  We would welcome the opportunity to collaborate with lawmakers and other interested stakeholders in exploring ways to address these issues and working to make our State more fair and just in the delivery of and access to end-of-life care. 

Bioethical Issues Committee
Mary Beth Morrissey, Outgoing Chair
Alan J. Brudner, Incoming Chair

Health Law Committee
Kathleen M. Burke, Outgoing Chair
Brian T. McGovern, Incoming Chair

Science and Law Committee
Aileen Nielsen, Chair

Submitted June 4, 2018