(Barak Wolff, MPH, is a long-time public health leader in New Mexico working in rural primary care, EMS, and trauma systems, and is the Director of the Public Health Division in the New Mexico Department of Health. Barak has served as an analyst for the NM Senate Health and Public Affairs Committee for almost 20 years. For the last eleven years, Barak has been deeply involved with end-of-life issues and is Board Chair of End of Life Options New Mexico. Barak has a Master of Public Health degree from the University of Michigan and a Bachelor of Science degree from Cornell University.)
“Politics is the art of the possible, the attainable – the art of the next best.” — Otto von Bismarck
In his Good Death Society Blog post two weeks ago, ethicist David Swanton, PhD, wrote about the importance of ensuring that all who genuinely wish to hasten their death should have that opportunity, with almost no infringements on their personal choices nor limitations on any heartfelt request. His opinion is that the appropriate “policy directive” should be that “all people have the right to access Voluntary Assisted Dying (VAD), so that their quality of life is not reduced below what they consider to be an acceptable threshold”. And finally, he suggests that currently “the VAD debate has been less than mature in many places”, that in most countries the laws and regulatory framework for what we call medical aid in dying (MAiD), is “unsatisfactory” and many of the “medical” criteria should be “rejected”. Dr. Swanton does acknowledge the importance that all candidates for a hastened death have “decision-making capacity”, that the choice be “voluntary” and that these “might be only eligibility conditions.”
While those are very strong and perhaps outspoken views, much of what Dr. Swanton asked about and confirmed by the consensus results from his survey, most of us would agree with. Many advocates would like our laws here in the States to allow broader eligibility criteria, to have reduced waiting times, have more flexibility about or even do away with “self-administration” requirements, etc. Looking back to the passage of Oregon’s law in 1997, unquestionably it was a product of hard fought negotiations, thoughtful discussions, and strategic compromises in order to get the first bill passed. With all its limitations (isn’t hindsight wonderful?), Oregon enabled medical aid in dying to get started in the US, and we are familiar with its slow but steady growth since then.
Passing any new law is difficult, particularly those that are controversial and are opposed by powerful and influential groups like the AMA and the Catholic Church. Passing a law to authorize medical aid in dying is incredibly difficult. It takes years of hard work, education, and advocacy and must be based on a “medical model” or it won’t even be considered, at least not in these United States. Passing laws is first and foremost a political process rather than an ethical one. From time to time they overlap, but not often enough.
Clearly advocates for medical aid in dying want to fully respect human rights for all, but in our country, laws are debated and then voted upon. If a majority of the votes are in favor, the law passes. If not, it doesn’t, or it gets amended during the legislative process until a majority of votes support it. Right or wrong, that is how it played out in the 11 jurisdictions (about 20% of the US population) that currently authorize medical aid in dying and how it will likely play out in the future. Currently and unfortunately in almost half our states, more conservative legislatures will not even consider, schedule, or debate these bills, in spite of incredibly capable, hard working advocates and public opinion showing at least 65% support.
The old saying, “Don’t let the perfect be the enemy of the good” comes into play as the legislative process proceeds, and advocates, supporters, and champions need to decide if it is better to have a law that is less than ideal … or have no law at all? Is something better than nothing? These are important, thought provoking and hard-fought debates that hopefully lead to laws that allow more people access compassionate end of life care, including assisted dying.
And finally, Dr. Swanton suggests that “only” legislation designed to achieve the open-ended policy direction he proposes “should be developed”. That feels very unrealistic and is inconsistent with the positive feedback and gratitude from the families of the more than 300 people who have utilized MAiD in New Mexico in the last two years since our law was enacted.
As I learned during our advocacy for the Elizabeth Whitefield End-of-Life Options Act and am frequently reminded, there are many hundreds of others, perhaps thousands, who are less fearful about their serious, life-threatening diagnoses knowing that they may have some options and control at the end, should they need it. Respecting human rights is paramount, but it is not an all or nothing proposition.
Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.
Payments and donations are tax deductible to the full extent allowed by law. Final Exit Network is a 501(c)3 nonprofit organization.
Barak,
Congratulations! Your dedication and persistence have brought important benefits to your fellow New Mexicans. Still there are many people who don’t have access to the provisions of the MAID laws. I believe they need and deserve our support too. Other options such as Final Exit Network and VSED should be there for them.