The six-months-to-live prognosis limitation in RTD laws makes FEN necessary

[EDITOR’S NOTE:  While I am taking some time off, Huck DeVenzio, Editor of FEN’s Newsletter, has given his permission to reprint on FEN’s blog some salient articles from past issues of the newsletter.  They have been lightly edited and/or updated.]

Is Half a Loaf Better than None?

From FEN Newsletter, February 2017

By Janis Landis

More jurisdictions are accepting physician-assisted death (PAD). What does this mean for Final Exit Network? Are we becoming less relevant, or more? FEN President Janis Landis addresses these questions.

If we have learned anything from the passage of civil rights laws, it is that they mean very little without enforcement and monitoring. It is gratifying to see Death with Dignity legislation gaining momentum around the country. But as with minority rights, women’s equality, and abortion–it is all about access. If you can’t obtain the benefit, then the law is worse than useless: it promotes a feeling of “our work is done” when the reality could not be further from the truth. And so it is with the right to die campaign.

Final Exit Network is not a lobbying organization. Our mission is to advise and comfort suffering people who wish to hasten their deaths. Such service is beneficial whether or not a state permits PAD. It may even be more valuable in states allowing physician assistance.

Each state that has approved legislation or a referendum–or even introduced them–has followed one and only one model: the Oregon law *. All these years later, not one change has been made to who is eligible for assistance under the laws. On the surface, there is good reason for this: Oregon’s experience has been thoroughly studied and no abuses have come to light, no scary incidents of coercion, nothing to detract from the “success” story. But what is not asked is: has the Oregon law in fact served its purpose?

Oregon and Washington were not good test cases for answering that question. They are small populations, and from the law’s passage had local and effective organizations that have continued to monitor and guide implementation. And, perhaps most importantly, their laws were introduced before the current wave of medical practice consolidation. This means that individual physicians could make their own determination about opting in or out and over time; as opposition decreased, more physicians could choose to join. But in California, we are seeing a completely different dynamic: large medical practices are making decisions at the Executive level, opting out and requiring all their physicians to comply with that decision. Second, and equally critical, no local organization is in place to provide guidance to local patients seeking to use the law. Compassion and Choices deserves the credit and thanks they have received for getting the law passed. But upon that law’s passage, C&C closed its volunteer/advocacy network. At best, individuals there can call the C&C toll-free line, but there is no information available on participating physicians. FEN, with our much more limited resources, is working to fill the gap. We have hired a former C&C advocate to continue networking and getting the word out. We have made contact with the few courageous doctors who have announced their determination to provide physician aid in dying within the parameters of the law. And of course our own toll free line is available, as always, to answer questions coming from anywhere in the country–there is no membership requirement and no charge for this service. 

And so with the hoped-for expansion of PAD laws, the need for our services will be even greater.  And of course, our original mission, providing information to those seeking end-of-life options remains urgent. As you know, all the PAD laws require a prognosis of death within six months. Those suffering the most, from neurological diseases such as ALS and Parkinson’s, will find no relief under those laws. And it is particularly cruel for them because the congratulations and celebrations upon the law’s passage have raised hopes which are then dashed when the strict limitations of the law are made clear. We remain the only DWD organization in the United States providing information to these desperate individuals.  

So is there a place for FEN in the wake of more PAD laws? If we want these laws to have practical meaning, if we want to encourage improvements in the existing legislative template, and if we want to reach those excluded by the law, the answer is a resounding YES. We are the only organization that provides the missing half of the loaf. Without it, the law remains, for most, a cruel illusion, inapplicable and/or out of reach when people actually seek to use it. 

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* Jurisdictions that permit physician-assisted dying include Oregon, Washington, Vermont, District of Columbia, Colorado, California, Hawaii, and New Jersey (beginning August 1, 2019).  Montana permits physician assistance in voluntarily hastening one’s death by decision of the Montana Supreme Court, based on Montana’s constitution.

Janis Landis is President of the Final Exit Network Board, on which she has served since 2011.  She is retired after a career as an Executive in the U.S. Department of Treasury.