HB 160: The “Delaware End of Life Options Act”
Representative Paul Baumbach has reintroduced his version of a number of states’ “Death With Dignity” legislation. The Newark area Representative originally introduced it as HB 150 in 2015, without a single cosponsor, and it was tabled in committee. In 2018, however, the Delaware End of Life Options Act, HB 160 has four cosponsors: Representative Bryon Short (D-7), Senator David Sokola (D-8), Representative Earl Jacques (D-27) and Senator Margaret Henry (D-2). Several other legislators have voiced support for the new bill, and it is close to gaining the votes needed to pass the House this year. HB160 passed out of committee in June with a vote of 8-6 and will be considered on the House floor in this legislative session. As we approach the vote, there are bound to be questions about the bill, and detractors will voice their opinions. Let us clear up some common misconceptions about Death With Dignity (DWD) legislation, explain what HB 160 does and does not allow and detail how the process plays out. Key to understanding the legislation is to look at the facts, not the myths.
How does the process work from start to finish?
First, the patient must be diagnosed with a terminal disease and have a prognosis of six months or less to live. The patient orally requests the medication from their attending physician. Physicians who are willing to participate must confirm the diagnosis and prognosis, assess the individual’s mental health, determine that the individual is making an informed decision free from pressure or coercion, and educate them on the DELOA as well as other end-of-life care options. Physicians who choose not to participate in providing medical aid in dying must still document the individual’s initial request, refer them to another provider and transfer their records, including the documentation of the initial request.
A second consulting physician must also assess the individual to confirm the terminal diagnosis, prognosis of six months or less and that the patient is capable of making informed health care decisions. If either physician has concerns about the individual’s ability to make a rational informed health care decision or that they are suffering from impaired judgement, they must refer them to a mental health professional for further evaluation. No prescription may be written until the mental health professional concludes the individual is capable and not suffering from impaired judgement. No sooner than fifteen days after the first oral request, the individual must repeat their request for the medication again from their attending physician.
After the two oral requests, the patient must submit a written request to their attending physician. The request is made via a template set forth in the legislation, and must be signed by two witnesses. The witnesses must meet several qualifications to sign the document. No more than one of them may be a relative; a beneficiary; an owner, operator, or employee of the patient’s healthcare facility; or the patient’s attending physician.
Once each of these steps has been completed and documented, the physician sends the request to the pharmacy. Finally, after 48 hours the medication is available.
At any time, the patient can rescind their request for medical aid-in-dying medication. The first request is valid only for one year, after which time the prescription cannot be granted based on that request. Instead, the process must start again.
If either the attending physician or consulting physician determines that the individual does not meet the eligibility criteria, is not acting voluntarily, is suffering from impaired judgement due to a mental health issue or any other reason, or is not making an informed decision, then that issue must be resolved before proceeding or the request is denied.
Physicians have many responsibilities throughout the process, as detailed in the full bill here. In short, the physician’s responsibilities include not only determining the terminally ill individual’s eligibility for medical aid in dying, but thoroughly educating the patient about their end-of-life care options and the possible outcomes of each, storage and use of medications, as well as disposal of unused medications. Additional physician responsibilities set forth by the standard of care including exploring the reasons behind the request for medical aid in dying, counseling the patient appropriately and ensuring that they have a support system in place so that their care needs are met.
As we have seen in Oregon, often, the life-ending medication stays in a secure location, never used. However, when the medication is used, individuals report that it is usually taken with family and other loved ones present, and the patient falls asleep quickly and quietly, then passes away peacefully.(3)
What are some common misconceptions about DWD legislation?
Depressed patients will be able to take their own lives: False
Under HB 160, two physicians must assess a terminally ill patient’s mental health before prescribing medication that would end their suffering. If either physician has concerns about the patient’s ability to make a rational informed health care decision or that they are suffering from impaired judgement, they must refer the patient to a mental health professional for further evaluation. No prescription may be written until the mental health professional concludes the patient is capable and not suffering from impaired judgement.
In addition, medical aid in dying is not suicide. People who seek medical aid in dying want to live but are stricken with life-ending illnesses. They are not choosing to die; the disease is taking their life. They are simply choosing not to prolong a difficult and painful dying process.
The American Association of Suicidology puts it this way: “The American Association of Suicidology recognizes that the practice of physician aid in dying, also called physician assisted suicide, Death with Dignity and medical aid in dying, is distinct from the behavior that has been traditionally and ordinarily described as “suicide,” the tragic event our organization works so hard to prevent.”
With the combination of fail-safes contained within the bill to prevent someone with mental health issues from being able to receive life-ending medication, it is unlikely that they would pursue this method of self-expiration when there are far easier ways to take their own life that do not require at least thirty days-which this bill requires.
Sick, elderly, or disabled patients will choose to take their own lives so they don’t burden their families: False
The “burden” fear is one of the most common arguments raised when discussing medical aid-in-dying legislation, and has been a staple lobbying tool against the measures in most states. First and foremost, age and disability are not qualifying factors for eligibility under the DELOA or any other medical aid-in-dying law. An individual must be terminally ill with a prognosis of six months or less, mentally capable and physically able to self-ingest the medication. Physicians follow the letter of the law for its safe harbor protections, and they can easily distinguish between a person living with a disability and a person dying of cancer (the most common diagnosis as demonstrated in all of the authorized states) or other terminal illness. Careful studies of the law’s 20-year record in Oregon show that fears it would harm people with disabilities or the elderly, frail or uninsured, or any marginalized groups have no merit.
Life insurance will not pay out for people who choose this method, further straining the family: False
Under HB 160, life insurance policies cannot modify pay-outs in any way if a patient chooses to use the Delaware End of Life Options Act (DELOA). In fact, a section of the bill mandates that the death certificate must list the underlying terminal illness as the cause of death. The life-ending methods entailed in programs like the DELOA are usually reported as peaceful and with a higher level of closure for the family than alternative methods.
Health insurance companies will pay for the medication for the DELOA, but deny possible life-extending procedures: False
There is no connection between the denial of expensive or experimental treatments and the coverage of medical aid in dying as an end-of-life option. A research article published in the New England Journal of Medicine and co-authored by Dr. Ezekiel Emanuel, a public opponent of medical aid in dying, concludes that insurers have no financial incentive to pressure patients to accelerate their deaths. Regardless of whether a state has authorized medical aid in dying, insurance providers cover treatments that are deemed effective and proven, and not those considered unnecessary, experimental.
In a combined 40 years of experience with medical aid in dying across six states, there has not been a single proven incidence of an insurance company denying treatment because of the availability of medical aid in dying. Additionally, it is illegal for anyone, including an insurance company, to coerce an individual to request or use medical aid in dying. This myth is borne of misreporting in Oregon news some years ago.
More patients will elect to end their lives, rather than fighting a disease: Mostly False
Ultimately, it is up to a patient who meets this bill’s qualifications to decide whether or not they want to fight through their final days, or die peacefully at home with family. If they qualify for the program, individual patients will be allowed that choice. Interestingly, in Oregon–the home of DWD law–approximately 33% of patients ultimately do not use the medication(1). many of them never even filling the actual prescription. Most patients report that they desire not only for the option, but the sense of control, which ultimately gives them the energy to keep fighting(2) and live their last days to the fullest. The peace of mind that provides is palliative in and of itself.
The medication will fall into the wrong hands or be abused: False
HB 160 includes the requirement the attending physician educate the terminally ill individual not only on the use of the medication but safekeeping, storage and disposal of unused medications as well. The physician sends the prescription directly to the pharmacy. A family member or friend can pick up the prescription for a patient and in some states it can be mailed.
The U.S. Drug Enforcement Agency (DEA) and FDA decide which category or schedule every drug falls within. Then the rules for how the drugs are dispensed are the same for all drugs within that category. The primary medication that is used for medical aid in dying has been assigned by the DEA as a Schedule II drug. In this case, a Schedule II drug must be signed for; the prescription must be brought in person or submitted through an approved e-signature.
What does HB 160 actually do?
In all fifty states, three options are recognized as constitutional rights for terminally patients who have run out of curative options; the right to refuse medical treatment;(3) the right to stop eating and drinking, or the refusal of nutrition and hydration; and the right to palliative or terminal sedation, a medically-induced vegetative state usually accompanied by the cessation of lifesaving treatments. These limited options keep the power with the physician and are not always quick or painless but they are guaranteed in every state, without any legal risk to the medical community. Alternatively, for patients in a coma or vegetative state, advance directives generally are accepted by the medical community to relay the desire for ending suffering if the patient is physically unable to express that desire.
HB 160 expands choice at the end of life for terminally ill patients by authorizing medical aid in dying. It provides the same protections to the medical community that are extended in the circumstances mentioned above, so long as the physicians practicing adhere to the standard of medical care and the process outlined in the legislation.
What can I do now?
HB 160 has a solid chance of passage during the 2018 legislative session, but legislators in both chambers need assurance that the bill is a step forward for terminally ill Delawareans. Although no one in the right frame of mind wants to die, we all will face that certainty at one time or another. Therefore, the question is not if one desires to die, but how one desires to die. When facing a terminal disease, we all deserve the option of ending our lives in a manner that is consistent with our personal wishes and spiritual beliefs. This is a personal choice, and should be kept between patients, medical professionals, and loved ones.
While medical aid in dying is a deeply emotional and hotly debated topic we are unlikely to resolve in our time, we must all respect and legally protect each other’s individual liberties and choices. Delaware cannot afford to let another important issue become too divisive, and once again neglect to act. Surely, looking at how far humanity has come on many social issues, we can come together and find a way to protect personal liberty while celebrating and cherishing life.
Please, contact your State legislators today, and ask them to support HB 160 when it comes up for vote. Legislative Hall in Dover: 302-744-4310
1 Why Oregon Patients Request Assisted Death: Family Members’ Views. Journal of General Internal Medicine, 23(2), 154-157. doi:10.1007/s11606-007-0476-x