There are now nine states, plus Washington, D.C., where medical aid-in-dying (MAiD) is legally available for terminally ill patients who want it, covering almost a quarter of the U.S. population. The recent trend suggests that there will be more states where this option will become available, and certainly nursing centers are locations where people have medical conditions that qualify them to request MAiD.
The baby boomer generation is fond of autonomy, and having a lethal prescription available is comforting to people who do not want to suffer more or become more dependent as their terminal illness progresses and for some, having that control and the knowledge that they can ingest when the time is right is all they need; a fair proportion of patients get the prescription but never do ingest the medications.
Currently, Oregon (1994), Washington (2008), Montana (2009), Vermont (2013), California (2015), Colorado (2016), Washington, D.C. (2017), Hawaii (2018), New Jersey (2019), and Maine (2019) allow a patient who has decisional capacity and six months or less to live (certified by two physicians) to request a prescription for a lethal dose of medication, which they must be able to self-administer.
There are nuances in specific requirements in some of these jurisdictions (for example, mandatory mental health evaluation), and all of the states have safeguards in place to help ensure this process is not abused.
A Controversial Practice
There is no requirement for any facility or individual professional to participate in any request for MAiD, and the practice remains controversial—many professional societies, including the American Medical Association, formally oppose participation in MAiD (which they still refer to as physician-assisted suicide, even though patients who choose to ingest the life-ending drugs are by law considered to have died of natural causes).
Even the language around MAiD is highly value-laden and polarizing. Oregon’s law (along with some subsequent others) is called the Death With Dignity Act, which implies that if the individual decides to die any other way, it will be undignified. Similarly, California called it the End of Life Option Act, which by the use of the singular word “option” suggests that this is the only option for dying patients, when in fact less than 1 percent of deaths actually result from MAiD in jurisdictions where it is available.
Slippery Slope
The ethical principles involved in MAiD are complex and nuanced, and autonomy or self-determination seems to be the primary goal, but “first, do no harm” (nonmaleficence) is difficult to ignore. Certainly providing a lethal prescription that will end a person’s life sooner than their natural disease process is hard to call harmless. On the other hand, beneficence (doing good) can certainly be invoked, because the provision of the lethal prescription alleviates suffering.
But what is clear about MAiD is that many people have strong feelings about it, and that there are valid concerns about its use and the potential for a “slippery slope” that may lead to the acceptance of active euthanasia (already legal in Canada and several European countries, some of which allow it for people who do not have a terminal medical condition).
There is no set prescription for the lethal medications, but historically, secobarbital—a barbiturate hypnotic agent similar to the agent used for pet euthanasia—has been the primary drug used in aid-in-dying regimens. However, this year the only company that was still making secobarbital (and that was charging several thousand dollars for the 100 capsules typically used for MAiD) stopped manufacturing it.
Alternative regimens generally include very high doses of digoxin (a medication that slows the heart), morphine, diazepam (Valium), and amitriptyline, preceded by some anti-nausea medication. These can be obtained for less than $1,000. The dosage is many times higher than needed to end a person’s life, and usually results in death within a few minutes to a few hours, with rare reported complications.
So, where does this leave skilled nursing centers? Residents in these centers clearly make requests for aid-in-dying, even in states where it is not permissible. Long before California’s End of Life Option Act went into effect in 2016, the author of this article was routinely asked, “Doc, you’d give your dog something to put her down if she were in the shape I’m in; can’t you just give me something to end this?” This was (and still is) often a call for help and a valuable invitation to discuss sources of anxiety, fears, and suffering, and to address them.
But the fact remains that over 20 percent of the population in skilled nursing centers can now make such a request in a place where the simple answer, “Of course I can’t do that. It’s against the law!” no longer applies.
Steering Clear
Skilled nursing center operators and professionals should be aware of the relevant federal legislation, HR1003 Assisted Suicide Funding Restriction Act of 1997, which is still in effect. This law “prohibits the use of appropriated funds for: 1.) causing or assisting in suicide, euthanasia, or mercy killing; 2.) compelling any person or entity to provide or fund any item, benefit, program, or service for such purpose; or 3.) asserting or advocating a legal right to cause or assist such actions.”
Obviously, almost all nursing centers rely on federal funding to operate. The definition of “appropriated funds” can be debated, but probably the most prudent interpretation of this law is that nursing centers that receive federal funds may want to steer clear of participating in MAiD, even with respect to storing medications.
MAiD Policies
Many skilled nursing centers, chains, and management companies have elected to create formal policies prohibiting MAiD within their premises. For residents who desire and have a legal right to request this option, there may be other strategies, including working with involved local hospices that can arrange off-site ingestion at a private residence or inpatient hospice unit.
There are few nursing centers that have implemented policies permitting MAiD, and they are understandably not advertising it. In independent and assisted living communities, where residents often store and self-administer all of their medications, there is less controversy about whether MAiD can be permitted, but some of these communities have also created policies and procedures around it, with variable ability to enforce.
Nursing centers and the staff who work there—especially nurses and social services professionals—should always take requests for MAiD seriously. The attending physician and medical director should be notified of such requests, and the request should be documented. The presence or absence of suicidal depression should always be assessed, and when present, formal mental health evaluation and interventions should be performed promptly.
In cases of extreme suicidality with a plan, transfer to an acute psychiatric unit is warranted. But for many residents making a request for MAiD there is not a pathological depression, but rather a well-thought-out and reasonable desire to avoid suffering by ending one’s life sooner when already declining with a terminal illness.
Most importantly, and in accordance with principles of resident-centered care, providers should always provide support and empathy to residents who fear the process of declining and dying, and who voice the desire to end things on their own terms. These people deserve excellent palliative care, a careful listening ear from the nursing center’s staff, and diligent attention to both psychological and physical symptoms.
Providers have a responsibility to respect residents’ feelings and wishes, and to walk the path along their final trajectory with them to the extent they are able.
Karl Steinberg, MD, CMD, HMDC is vice president of AMDA – The Society for Post-Acute and Long-Term Care Medicine, vice president of National POLST, chief medical officer for Mariner Health Care, and a long-time skilled nursing center and hospice medical director and attending physician from Oceanside, Calif. He is also a certified health care ethics consultant and takes his dogs to work on most days.
AMDA – The Society for Post-Acute and Long Term Care Medicine (www.paltc.org), formerly known as the American Medical Directors Association, is the professional society representing the community of over 50,000 medical directors, physicians, nurse practitioners, physician assistants, and other practitioners working in the various post-acute and long term care settings. The Society’s 5,500 members work in skilled nursing, long term care, and assisted living communities; CCRCs; home care, hospice, and PACE programs; and other settings.