The New Jersey Medical Aid in Dying for the Terminally Ill Act (MAID) makes the Commissioner of Health responsible for collecting information and for issuing reports regarding the use of the MAID.1 The Act permits physicians to prescribe medication, which the patient self-administers, intended to have the effect of ending a patient’s life. There are now nearly three years’ worth of data to evaluate from reports prepared by the Office of the State Medical Examiner as required by the statute. These reports cover 10 demographic categories.
This article will analyze the number of times the option to self-administer medication under the Act was used in New Jersey on an annual basis; additionally, it will present use statistics from five demographic categories and include comparison of data available from other jurisdictions with similar laws. Reasons for the relatively low utilization of the Act in New Jersey are also explored.
Background: Enactment of the Law and Obstacles to Enforcement
The topic of physician assistance with dying has been a matter of considerable debate and commentary, including in issues of this journal.2 Responses to proposed New Jersey legislation had included comments such as “for the physician, it is about intent. The goal of a lethal prescription is to kill.”3 The Medical Aid in Dying for the Terminally Ill Act signed by Governor Murphy on April 12, 2019 was the ultimate outcome of legislative efforts that had begun in 2012 with the introduction of the New Jersey Death with Dignity Act. Earlier versions of the 2019 legislation had included a provision for the submission of the law for approval by the people by referendum, but this was not part of the law enacted in 2019.
“Before any implementation could occur, a lawsuit was filed by a physician who did not wish to participate in the activities authorized by the Act.”
As enacted, the law provided for a delayed effective date of August 1, 2019. The Act required that a prescription be requested by the patient on two separate occasions separated by at least 15 days. Before any implementation could occur, a lawsuit was filed by a physician who did not wish to participate in the activities authorized by the Act.4 The physician challenged the constitutionality of the Act on various grounds. These included an asserted fundamental right to defend life, First Amendment rights, as well as equal protection and due process, along with an argument based on the supposed violation of the Administrative Procedure Act by failing to promulgate rulemaking. A temporary restraining order was issued by a Chancery Division judge on August 14, 2019, but without any finding of unconstitutionality subject to later proceedings. The next day, the Attorney General sought appellate review and the restraints were vacated on August 27. The plaintiff made an emergency application to the New Jersey Supreme Court. This request for emergent relief was denied on August 27. The matter was returned to the trial court for further proceedings.
After amendments to the complaint, adding as plaintiffs a terminally ill patient and a pharmacist who had chosen not to participate in filling prescriptions issued under the Act, the case was presented to the trial court on cross-motions to dismiss and for entry of a preliminary injunction against the operation of the Act. By Order dated April 1, 2020, the complaint was dismissed and the injunction denied.4 The trial court analyzed the multiple claims being made and rejected them all. On June 18, 2020, the plaintiffs filed a notice of appeal. The appellate opinion affirming the dismissal and rejecting the challenges to the Act was filed on June 10, 2022.5
There have been repeated attempts to repeal the Act through bills introduced in the Assembly.6 These have been consistently unsuccessful in getting out of Committee review. Other attempts to undermine the Act have taken the form of a December 30, 2019 petition to the New Jersey State Board of Medical Examiners (BME) to make amendments to regulations concerning acceptable forms of Professional Practice Structure and those regarding the publicly available Physician Health Care Profile so as to require an indication of whether the physician was participating in MAID. The request for rule-making was rejected.7 Emphasizing the Act’s explicit requirements for voluntary participation by both patient and physician, the Board expressed a concern that disclosure of participation “could be seen as discouraging physicians from providing healthcare services pursuant to the Act. Such a requirement could also pose a risk to the privacy of patients who seek health care services under the Act.”8
In contrast, the BME has taken steps supportive of MAID. With limited exceptions, regulations of the licensing board state that medications shall not be dispensed or prescribed to an individual without the physician first having performed a history and physical examination.9 The BME initially took the position that MAID required an in-person evaluation by a physician. But subsequently, in August 2020, the BME posted a Checklist for an Attending Physician regarding MAID Act requirements on its website, which authorized the use of telemedicine, at least during the State of Emergency and the Public Health Emergency due to COVID-19.10 Effective March 7, 2022, the Governor declared an end to the Public Health Emergency but the State of Emergency due to COVID continues.11
Brief Overview of Provisions and Structure of the Act
In authorizing a qualified, terminally ill patient to self-administer medication in order to bring about that patient’s own death, the Legislature recognized “New Jersey’s long-standing commitment to individual dignity, informed consent, and the fundamental right of competent adults to make health care decisions about whether to have life-prolonging medical or surgical means or procedures provided, withheld, or withdrawn.”12 That commitment can be traced back to the 1976 Supreme Court opinion of In re Quinlan.13
The statute sets forth several legislative findings:
Statistics from other states that have enacted laws to provide compassionate medical aid in dying for terminally ill patients indicate that the great majority of patients who requested medication under the laws of those states, including more than 90 percent of patients in Oregon since 1998 and between 72 percent and 86 percent of patients in Washington in each year since 2009, were enrolled in hospice care at the time of death, suggesting that those patients had availed themselves of available treatment and comfort care options available to them at the time they requested compassionate medical aid in dying.14
The Legislature was emphatic about having a “defined and safeguarded process” that would:
1) guide healthcare providers and patient advocates who provide support to dying patients; 2) assist capable, terminally ill patients who request compassionate medical aid in dying; 3) protect vulnerable adults from abuse; and 4) ensure that the process is entirely voluntary on the part of all participants, including patients and those healthcare providers that are providing care to dying patients.15
The statute establishes an extended process with multiple steps. These start with a requirement that requires a terminally ill patient who wishes to avail themselves of the Act’s provisions to make two oral requests to their attending physician at least 15 days apart and also submit a formal written request before medication can be prescribed.16 It places on the attending physician, (defined as the physician “who has primary responsibility for the treatment and care of a qualified, terminally ill patient and treatment of the patient’s illness, disease, or condition”17 a number of responsibilities before a prescription can be written. This starts with a determination that a patient “is in the terminal stage of an irreversibly fatal illness, disease, or condition with a prognosis, based upon reasonable medical certainty, of a life expectancy of six months or less.”17 A confirmatory second opinion is to be obtained from a consulting physician as well as referral to a mental health professional if there is any question as to decision-making capacity. The statute sets forth requirements that “must be substantially” contained in the request.18 The Department of Health (DOH) has posted an approved form of Request for Medication on its website.19
“No person may take action on behalf of the patient for the purposes of the Act.”
No person may take action on behalf of the patient for the purposes of the Act. This includes persons designated as a guardian, a conservator, a healthcare representative acting pursuant to an Advance Directive, or a patient’s representative under a Practitioner’s Order for Life-Sustaining Treatment.
The attending physician is responsible for ensuring that “all appropriate steps are carried out in accordance with the provisions of [the Act] before writing a prescription for medication that a qualified, terminally ill patient may choose to self-administer pursuant to [the Act].”20 The attending physician’s responsibilities include informing the patient of his/her medical prognosis, “feasible alternatives to taking the medication, including but not limited to concurrent or additional treatment opportunities, palliative care, comfort care, hospice care, and pain control,” and “inform[ing] the patient of the patient’s opportunity to rescind the request at any time.”21
The Act provides broad immunities to persons who participate or refuse to participate in the actions that it authorizes. It has a specific emphasis on the voluntary nature of the participation. The Act requires that if a healthcare professional were “unable or unwilling” to carry out a patient’s request for medication and the patient transferred further care to another physician, the prior physician was to transfer a copy of the patient’s records to the new physician.22 It then goes on to provide the following:
[A] person shall not be subject to civil or criminal liability or professional disciplinary action, or subject to censure, discipline, suspension, or loss of any licensure, certification, privileges, or membership, for any action taken in compliance with the provisions of [the Act], including being present when a qualified terminally ill patient self-administers medication prescribed pursuant to [the Act], or for the refusal to take any action in furtherance of, or to otherwise participate in, a request for medication pursuant to the provisions of [the Act.]23
The Act states that “[a]ny action taken” that is in compliance with the Act “shall not constitute patient abuse or neglect, suicide, assisted suicide, mercy killing, euthanasia, or homicide under any law of this State.”24 This characterization is substantially consistent with the conclusions in In re Quinlan25 and In re Conroy26 regarding an individual’s exercise of personal autonomy to refuse or discontinue medical treatment even though that might end the person’s life.
A threshold condition on a patient’s request for medication under the Act is that they be an “adult resident of New Jersey.”27 Because of this limitation, the physician’s records must include documentation of the patient’s status as a resident of New Jersey, whether in the form of a driver’s license, voter registration or tax returns.28
The Act further requires the attending physician to include an extensive list of items in the patient’s medical record.29 The documentation must include the following:
- the determination that the patient is a qualified, terminally ill patient and the basis for that determination
- all oral and written requests by the patient to the attending physician for medication that the patient may choose to self-administer pursuant to the Act
- the attending physician’s diagnosis and prognosis, and determination that the patient is capable of making health decisions, is acting voluntarily, and has made an informed decision
- the consulting physician’s diagnosis and prognosis, and verification that the patient is capable, is acting voluntarily, and has made an informed decision
- if applicable, a report of the determination made by a mental healthcare professional as to whether the patient is capable of making health decisions
- the attending physician’s recommendation that the patient participate in a consultation concerning concurrent or additional treatment opportunities, palliative care, comfort care, hospice care, and pain control options; the referral provided to the patient with a referral to a healthcare professional qualified to discuss these options with the patient; an indication as to whether the patient participated in the consultation; and an indication as to whether the patient is currently receiving palliative care, comfort care, hospice care, or pain control treatments
- the attending physician’s offer to the patient to rescind the patient’s request at the time of the patient’s second oral request
- a note by the attending physician indicating that all requirements under the Act have been met and indicating the steps taken to carry out the patient’s request for medication, including a notation of the medication prescribed
Using prescribed regulation forms of the Commissioner of Health, no later than 30 days after the dispensing of medication as provided in the Act, the physician or pharmacist who dispensed the medication shall file a copy of the dispensing record with the DOH. Furthermore, no later than 30 days after the date a qualified, terminally ill patient dies, the attending physician must transmit whatever documentation of the patient’s death the Director of the Division of Consumer Affairs requires.30 The necessary forms for compliance are available on the DOH website. These reports are to be filed with the Office of the State Medical Examiner.
“Not attending risks losing the opportunity to follow-up with regard to the submission of documentation of the patient’s death.”
The MAID statute does not require the prescribing attending physician to be present at the time the patient self-administers the medication. Some practitioners do not attend the ingestion of the medication, while others do as a matter of preferred practice. Not attending risks losing the opportunity to follow-up with regard to the submission of documentation of the patient’s death.
No specific medications are required or recommended by the Act beyond a requirement that the patient be able to self-administer the medication. Several related combinations have been used. The most frequently prescribed so far has been digoxin, diazepam, amitriptyline, morphine sulfate, and phenobarbital, or a combination of ondansetron (Zofran) with metoclopramide.
The Act requires the DOH to prepare and make available to the public an annual statistical report of information collected from the compliance reports.31 Written by the Office of the Chief Medical Examiner and posted on the DOH website, reports are currently available for 2019, 2020 and 2021.32 There is some ambiguity in the data because the Annual Reports describe coverage of Medical Aid in Dying cases, but the reports are not clear whether case means the number of attending physician compliance forms received (indicating a prescription was written for a patient), the number of pharmacy-dispensing records received or the number of patient deaths from ingesting medication based on the required follow-up reports from physicians.
As outlined in Table 1, the annual reports for New Jersey show that there were participants as follows:
Further demographic information is summarized in Table 1.
Summary of the Medical Aid in Dying for the Terminally Data Reported for New Jersey
|Cancer/Malignancy||7||24||35||Neuro-degenerative disease||3||5||10||Pulmonary disease||1||2||1||Gastrointestinal disease||1||-||-||Cardiovascular disease||-||1||2||Cerebrovascular disease||-||1||-||Other||-||-||2|
|Place of Death||2019||2020||2021|
|Home||10||20||47||Other’s Home||1||2||1||Nursing Home||1||1||1||Hospice Facility||-||-||1|
NOTE: The reporting for 2019 included only the time period of August 1 through December 31, 2019. Data was submitted for the 2021 period for three individuals who applied for and received medication for the program but who had not been reported as deceased in that time period and for five individuals who applied for and received medication but passed away without use of the medication. Compiled from New Jersey State Department of Health Medical Aid in Dying Reports, 2019 – 2021 at https://www.nj.gov/health/advancedirective/maid.
Reporting in Other Jurisdictions
Statistical reports from the other states having some form of medical aid in dying are available on an annual or bi-annual basis. The one exception is Montana that allows physician-assisted dying as a result of a court ruling rather than pursuant to legislation.33 There is no statutory reporting requirement and statistical data are not available for that state.
Because there is variability in the information reported, exact comparisons are difficult to make. There have been recommendations for uniform standards regarding the data elements collected and reported as well as the sources of the data.34
“Oregon was the first state to enact a death with dignity act followed by the State of Washington.”
Oregon was the first state to enact a death with dignity act followed by the State of Washington. The data summary issued by the Oregon Health Authority provides information going back to the law’s effective date in 1998. The most recent report provided data concerning 238 persons utilizing the statute in 2021, with a total of 2,159 patients, as of January 21, 2022, having ingested lethal medication under the Act since 1998. The specifics of data earlier than the most recent two years are presented in a cumulative fashion.35 In contrast, the State of Washington addresses only the current year in its annual report concerning 340 participants without any comparison or trend analysis.36
It appears that of the states that enacted MAID laws before 2019, Oregon and Washington collect and report the broadest range of data with California reporting less and Colorado, Vermont and Washington, DC providing the least.37
There are three states that enacted their operative laws in approximately the same timeframe as New Jersey. In 2019, Hawaii and Maine enacted their statutes with New Mexico following in 2021. The Hawaiian report lists 27 patients in 2019 and 32 patients in 2020,38 but the report contains very little additional content. The Maine 2019 Annual Report, presenting information from the September 19, 2019 effective date through the end of the year, identified only one instance of the use of the death with dignity act option but reported 50 patients in 2020.39 New Mexico is the most recent jurisdiction to approve an End-of-Life Options Act, which went into effect on June 18, 2021. An annual statistics report is required by the statute.40 However, one has not yet been issued.
The reports from all these states show that cancer or some form of malignancy is the dominant underlying illness of individuals seeking medical aid in dying, with some sort of neuromuscular disorder, such as ALS or Parkinson’s Disease, as next in order.
In assessing the comparative incidence of use, a factor to consider is that the population of New Jersey is larger than any of the other states with MAID laws except California. Estimates have been made projecting an increased usage given the larger size of New Jersey’s population in comparison to most of the other states with similar MAID laws based on a rationale that patients here may use the New Jersey MAID Act in a similar fashion as those other states.41 Regardless of population, increasing utilization over time would be consistent with the experience in states that have had such laws for longer periods of time.
Although the COVID-19 pandemic may have had some impact, the overall incidence of use of medical assistance in dying in New Jersey to date does not suggest a looming deluge of patients seeking this intervention. One explanation for the limited utilization may be data loss resulting from there being no requirement that the prescribing physician be present at the time of the self-administration. But it also suggests a problem with access or some reluctance or reservations concerning this end-of-life option or perhaps both. Indeed, difficulty in finding a physician to provide care in compliance with the Act may be an explanation for the relatively low utilization.42
Since an individual needs someone to be the attending physician who will go through the required steps and prescribe the medication and a second physician to fill the position of the required consulting physician to confirm the individual’s eligibility, how does one identify these physicians? Obviously, one’s current treating physician(s) are possibilities, but if they are unable or unwilling to participate as permitted by the Act, does the treating doctor have any responsibility beyond the statutorily required transfer of the patient’s records to a succeeding physician on request? In connection with the termination of a patient-physician relationship generally, BME regulations require that upon a patient’s request, a physician “make reasonable efforts to assist the patient in obtaining medical services from another licensee qualified to meet the patient’s medical needs” including “providing referrals to the patient.”43 But there really is no infrastructure for such referrals.
The BME explicitly disclaims providing physician referral services. It had rejected a petition for rulemaking to require disclosure of information regarding this type of service in the physician’s New Jersey Health Care Profile website. The BME commented on an apparent “misconception” by the petitioner, that “once a physician has provided healthcare services under the Act, he or she would necessarily provide such healthcare services in the future.”44
There is no published directory. There have not been advertisements in the public media by practitioners offering this service. Very few New Jersey providers can be identified with an Internet search. The hospice community has not fully embraced MAID and there are differences of opinion as to how it fits in the hospice approach to end-of-life issues.45
The Medical Society of New Jersey (MSNJ) has no formal referral system for patients seeking to utilize the Medical Aid in Dying Act. Indeed, MSNJ had been in opposition to enactment of the legislation. In mid-August 2019 after the Act had been passed, MSNJ issued a statement providing guidance for physicians and healthcare facilities in formulating practice policies. The guidance set forth on the Society’s website provides seven principles to guide the implementation of the Act.46 These were as follows:
- Do Not Erode Public Trust in The Physician/Patient Relationship. There is already significant lack of trust of the medical community by some members of the public. Wondering if your physician is trying to cure your illness or is trying to convince you to die would not increase that trust. While many distrust the system, they still trust their own doctor. Discussion and implementation should not be delegated to nursing or subordinate staff but should be by the physician or Advance Practice Nurse.
- Balance Beneficence/Non-Maleficence. The physician’s responsibility is to help and not harm the patient. Ensure decisions are based on clinical criteria.
- Respect Patient Autonomy. Qualified adults who retain decision-making capacity have the right to accept or refuse interventions and their decisions should be determinative.
- Strive to Reduce Suffering. A goal of medicine is to reduce patient suffering as defined by the patient.
- Protect Vulnerable Populations. Prevent exploitation by involved parties whose priorities are not those of the patient. Ensure that those with disabilities are not undervalued or coerced.
- Allow Physician Choice. No practitioner should be required to perform an activity that undermines their own deeply held moral beliefs. Physicians are obligated to ensure prompt transfer of care.
- Protect Confidentiality While Keeping Records to Monitor the Policy. Respect existing HIPAA requirements but maintain transparent records of how the policy is implemented and monitored for compliance.46
The MSNJ website provides resources for physicians treating patients with serious illness and end-of-life issues. It has added a link to the American Clinicians Academy on Medical Aid in Dying. This organization has an online Patient-to-Doctor Referral System to connect eligible patients with physicians who participate in medical aid in dying.47 Among the eligibility screening questions is whether the individual has asked their current physician if that doctor will be the prescribing physician and/or the consulting physician to confirm the diagnosis. The intake form has a statement that “[w]e cannot find you a new doctor to work with your aid-in-dying request if you haven’t yet asked your existing doctors to do so (unless you know specifically that they will not).” The instructions for completion of the intake form emphasize that the inquiry of the current physician must specifically ask about willingness to participate in the MAID process and “NOT ONLY IF THEY SUPPORT YOUR DECISION.”48
“Finding a physician who will prescribe the medication may be the most significant issue affecting access to medical aid in dying.”
Finding a physician who will prescribe the medication may be the most significant issue affecting access to medical aid in dying. There is limited data on physician attitudes and experience with assisted dying.49 There has not been a study of New Jersey physicians to ascertain their level of support and willingness to participate. But given the continuing opposition to MAID by major medical societies such as the American College of Physicians50 and the American Medical Association51 on ethical grounds as well as the non-committal position of other professional societies,52 limited participation by New Jersey physicians may persist. Whether that trend continues remains to be seen.