Katelyn John is majoring in neuroscience and is a 2022-23 health care ethics intern at the Markkula Center for Applied Ethics. Views are her own.
Any form of physician-assisted suicide, now known as medical aid in dying (MAID), has long been stigmatized. After all, many people consider the idea of doctors helping patients die to be antithetical to doctors’ roles as healers. Even the American Medical Association (AMA) opposed physician-assisted suicide for many years, although it just recently (and very carefully) affirmed physicians’ ability to perform MAID “in accordance with the dictates of their conscience without violating their professional obligations.” However, MAID is an important part of healthcare for many patients who have run out of other options or who are in pain.
MAID is the medical procedure and legal right of terminally ill patients receiving clinician-prescribed and provided medications to end their lives. MAID is distinctly separate from euthanasia, which is the administration of a life-ending means by another person to a patient in order to relieve the patient’s suffering (and which the AMA also strongly opposes). Currently, only 11 U.S. jurisdictions allow for MAID, and many of them have impractical and likely unethical legal restrictions on how MAID can occur.
There are two very different major ethical issues surrounding MAID: first, how some believe that the act of ending a patient’s life conflicts with the biomedical ethical principle of nonmaleficence, and second, that the MAID law that is in effect in California is unethical because it is too restrictive and is discriminatory against those who are suffering from certain illnesses.
Compassionate End-of-Life Care
The biggest ethical challenge that the physicians of patients with terminal illnesses face is the violation of nonmaleficence. It is a physician’s responsibility to provide the best quality of care to their patients and to “do no harm.” In an obvious conflict, if a patient wishes for MAID in order to avoid further suffering, their physician would need to provide them with the necessary medications in order to end the patient’s life. Would allowing this be violating the ethical obligation of a physician to do no harm to their patient? Many would argue that MAID is indeed morally and ethically incompatible with a physician's duty to heal, and that doing so is not only bad for the patients, but that allowing MAID will lead to doctors becoming unethical and lacking in compassion.
However, for some patients, almost no amount of pain management or morphine can give them comfort as they knowingly approach their death. Isn’t it more compliant with the principles of beneficence and nonmaleficence to prevent further physical and emotional harm to the patient? Not only is having a terminal illness difficult for the patient, it is also difficult for their family and friends. While the patient is the one experiencing it, watching a loved one’s condition deteriorate, often in pain despite palliative care’s best efforts, is arguably almost as painful. By allowing patients to die with dignity in the way they want–at the right place, time, and manner–we are respecting their right to autonomy and giving them back a choice in a situation that is already out of their control.
Ethical Concerns with the Law
While there are still concerns surrounding the ethics of allowing MAID, the already existing law in California may in fact not allow enough access. The current California End of Life Option Act requires that the patients who use it have a terminal illness, a prognosis of six months or less, full mental capacity, several requests for MAID with waiting periods in between, and they must be capable of administering the medication to themselves without assistance. This means that, if they choose to take the medications orally, the patient must be able to sip through a straw and swallow; or they must be able to physically press a syringe plunger to dispense the medications through their feeding or rectal tube.
This requirement was set in place as a medical safeguard and in order to draw a line between MAID and euthanasia. There were and are fears that, if we allowed clinicians to administer the medications to the patient, it would open the doors for abuse against vulnerable populations. The act of administering the medications themselves was seen as a final form of obtaining consent. However, this part of the law has only led to more inequality for those with disabilities caused by neurological conditions.
For people with neurological disorders, especially those that are progressive like multiple sclerosis, amyotrophic lateral sclerosis, Parkinson’s, etc, this part of the law makes their options limited and on a restricted timeline. In order to be eligible for MAID, they must retain their physical ability to self-administer their medication. However, when their disease progressively takes away their ability, they must either receive MAID before they are emotionally ready but while they still have motor function, or wait so that they can give themselves and their families time to emotionally prepare but risk losing eligibility and dying from their disease.
This specific requirement violates both the American Disabilities Act (that mandates equal access to healthcare) and the ethical principle of justice, as people with neurological or motor disorders bear an unfair burden compared to others with terminal illnesses and are not getting what they are due: equality and proper healthcare. While many of them could be said to be simply dealt a poor hand due to their conditions, it is neither fair nor just to discriminate against people with certain kinds of illnesses just because of the disability it causes.
Practical Implications
Only 22 percent of the population in the United States has access to medical aid in dying. While this is a proper step in providing patients with better end-of-life care options, the legal hurdles and moral minefield that physicians and their patients must navigate due to the government’s and general population of physicians' unwillingness to affirm MAID as healthcare are numerous.
Because of the stigma associated with euthanasia in the United States, physicians who perform MAID have needed to get creative. In Canada, medical aid in dying patients have the option to take oral medications themselves or allow their physician to administer an intravenous injection. Only 13 of over 21,000 MAID patients in Canada chose to self-administer their medications because most patients simply want the most efficient manner of death. However, here in the United States, patients do not get that choice. When patients are dying, so is the gastrointestinal tract–which is exactly what MAID physicians are forced to use in order to help their patients die. This requirement to use a dying vessel to administer medication makes it all the more difficult for physicians to provide proper MAID care, as the gastrointestinal tract may be inefficient at absorbing medication when someone is dying. Physicians like Dr. Lonny Shavelson, who is a pioneer in MAID and created the first clinic specifically for aid in dying, had to experiment with different co*cktails of medication–compound drugs, which aren’t regulated by the FDA–in order to find the combination that yielded the quickest death despite these medically impractical restrictions. For his patients, even a few hours make a difference.
Moving Forward
It’s clear that the ethics surrounding MAID are a complex set of issues. However, until we accept MAID as healthcare and an end-of-life option for patients, they will continue to suffer from the lack of knowledge and research in medical aid in dying, the strict and medically impractical parameters their doctors try to work within, and inequality of access. Therefore, our currently unethical laws need to be reformed to allow equal access to medical aid in dying care for all and to allow physicians and scientists to develop a better, uniform protocol.
