When safeguards become roadblocks, Part 2

Part 1 on this topic discusses several impediments to eligibility for medical assistance in dying (MAID) laws and contrasts and explains the criteria used by Final Exit Network (FEN) for accepting applicants for its Exit Guide program, a program that teaches and educates clients about a peaceful and effective method to hasten one’s death to end suffering.  Part 2 continues exploring FEN’s eligibility criteria, looks at other impediments to MAID, and considers one minimal change that recently has been made to Oregon’s law.

Other criteria used by FEN

Although FEN does not require a terminal illness to be eligible, it does require mental competency at the time of application for education and training services and at the time the person chooses to exit.  FEN mental competency criteria are not significantly different from MAID laws.

But in addition to the mental competency criterion, FEN requires that applicants

•  have “existing or reasonably anticipated unbearable suffering or an unacceptable or intolerable quality of life with no reasonable hope of improvement” 

•  be aware of treatment options, “though applicants are not required to pursue treatment that is unacceptable to them” 

•  demonstrate that they have informed, or expressed “a willingness to inform, close family members and intimate associates of the applicant’s intent” 

•  submit a personal statement describing “how the medical condition meaningfully reduces or will reduce the applicant’s quality of life, including examples of current physical or mental decline, . . . the applicant’s values as they pertain to end-of-life choices, and a statement of what the applicant wants from Final Exit Network.” 

Specific criteria of FEN’s program

In addition to meeting all the general criteria, an application must fall into at least one of the following four categories [the specific criteria]: 

1.  Serious Physical Disease: The applicant’s medical records must confirm a diagnosis of a recognized, serious disease that is evident on physical examination, imaging studies, or laboratory tests. Examples include, but are not limited to, all forms of malignancy; hereditary and acquired neurological conditions such as Huntington’s disease, multiple sclerosis, and amyotrophic lateral sclerosis; disabling cardiovascular disease; and progressive pulmonary disease. 

2.  Chronic, Severe, Somatic Pain: The applicant’s medical records must confirm that the applicant experiences chronic, severe, uncontrolled pain; . . . medical records must show evidence of the severity, duration, and intractable nature of the pain despite reasonable medical attention, although this evidence may only be documentation of the applicant’s chief complaints and exclusion of possible causes.

3.  Dementia: The applicant’s medical records must confirm a diagnosis of cognitive impairment or dementia and provide evidence based on cognitive or neurological test results. The dementia may be a progressive type, such as Alzheimer’s, or a stable type, such as dementia from a stroke. 

4.  Constellation of Conditions: The applicant’s medical records must confirm that the applicant suffers from a combination of irreversible medical conditions. This category is intended to capture what is sometimes called “completed life,” “life well lived,” or “old age rational suicide,” but may also include a constellation of medical conditions resulting from an intractable chronic condition, such as diabetes or an autoimmune disorder.

MAID process in Oregon

To be able to compare FEN’s process with Oregon’s requires a basic understanding about how Oregon’s MAID law works. The Oregon Health Authority outlines the MAID process:

To request a prescription for lethal medications, the DWDA requires that a patient must be:

• An adult (18 years of age or older),

• A resident of Oregon,

• Capable (defined as able to make and communicate health care decisions), and

• Diagnosed with a terminal illness that will lead to death within six months.

Patients meeting these requirements are eligible to request a prescription for lethal medication from a licensed Oregon physician. To receive a prescription for lethal medication, the following steps must be fulfilled:

• The patient must make two oral requests to his or her physician, separated by at least 15 days. [15-day waiting period can be waived if the person is expected to die before the waiting period is over.]

• The patient must provide a written request to his or her physician, signed in the presence of two witnesses.

• The prescribing physician and a consulting physician must confirm the diagnosis and prognosis.

• The prescribing physician and a consulting physician must determine whether the patient is capable.

• If either physician believes the patient’s judgment is impaired by a psychiatric or psychological disorder, the patient must be referred for a psychological examination.

• The prescribing physician must inform the patient of feasible alternatives to DWDA, including comfort care, hospice care, and pain control.

• The prescribing physician must request, but may not require, the patient to notify his or her next-of-kin of the prescription request.

Differences between Oregon’s MAID process and FEN process

The contrasts between the Oregon MAID model and FEN’s process should be clear.  With FEN–

• no terminal condition required

• no requests to physicians for lethal drugs required, though a personal letter explaining reasons for wanting to hasten death is required

• competency, mental state, and ability to use inert gas process determined through consultations with a coordinator, a structured interview, review by three physicians of medical records, reports from a coordinator and an interviewer, and personal contact by two exit guides

Starting in 2020, the 15-day waiting period in Oregon can be waived for patients who cannot survive the waiting period.  This makes MAID in Oregon marginally more available to a very small number of applicants. 

Richard MacDonald, M.D., former medical director for both the Hemlock Society and Final Exit Network, provides additional information about FEN’s program– 

FEN is not just a group of amateurs who act in a disorganized program when offering information specific to the needs of those who call us. We consist of volunteers, that is true. We charge no fees for what we offer unlike most organizations involved in these issues.

However, what we offer is support from trained volunteers, with many physicians included, along with nurses, hospice workers and social workers.  When a person who is suffering a poor quality of life and has substantial health issues that have not been resolved by organized medicine, decides their life is no longer in keeping with their values, they may apply to our Support Program.

One problem with MAID that seems to have been overlooked when the law was passed in Oregon was access to participating clinicians outside of urban areas.  A chronic problem for many rural people suffering from any health condition is access to physicians.  Earlier this year in Hawaii, a bill, SB2582, was introduced in its state senate that would authorize advanced practice registered nurses (APRNs), in addition to physicians, to carry out its MAID law in accordance with their scope of practice and prescribing authority. The bill also authorizes psychiatric mental health nurse practitioners, in addition to psychiatrists, psychologists, and clinical social workers, to provide counseling to a qualified patient. In addition, it reduces the mandatory waiting period between oral requests from twenty days to fifteen days, and, like Oregon, waives the mandatory waiting period for terminally ill individuals not expected to survive the mandatory waiting period.

SB2582 passed the state senate at the end of February and is pending in the house.  Expanding practitioners and reducing waiting periods in appropriate cases should increase MAID services in rural areas and make MAID more accessible to those who want to limit their suffering from debilitating disease.

One final difference between MAID and FEN is the method used to hasten death.  MAID laws use lethal drugs, while FEN educates about the use of inert gas as a peaceful and effective method to achieve death and thereby end suffering.  It is a self-help method legal in all fifty states and the District of Columbia.  The materials needed and purchased by applicants for their own use may cost no more than $400 when obtained from commercial sources; in contrast, lethal prescriptions may cost several thousand dollars, in addition to medical visits.

Conclusion

Unlike MAID, which is available in only ten US jurisdictions, FEN operates throughout the country, responding to the suffering of people who have a debilitating illness from which they will eventually die.  FEN’s application process is comprehensive, and yet available to far more people than MAID, even in those jurisdictions that have MAID laws.  FEN demonstrates that safeguards don’t have to be roadblocks to ending suffering.