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Death, dignity and the Albany debate

Assemb. Amy Paulin (D-Scarsdale) speaks about her legislation

Assemb. Amy Paulin (D-Scarsdale) speaks about her legislation to legalize aid in dying during a news conference at the state Capitol on Feb. 9, 2016, in Albany. Paulin and other advocates of letting the terminally ill end their lives say the proposed law would limit suffering and has safeguards to prevent mistakes and abuse. Photo Credit: AP / Mike Groll

Here’s an issue worth debating. The New York State Legislature is considering several death-with-dignity laws, including a Medical Aid in Dying Act. If any of these bills become law, terminally ill patients who meet certain requirements will be permitted to request life-ending medication.

New York is the latest in a wave of states looking at the issue, although only a handful have passed actual laws. California’s death-with-dignity law — The End of Life Option Act — will take effect on June 9. It allows terminally ill residents of the state to end their lives with the help of their doctors.

Big moral changes in America come slowly, but they do come if we put energy and intellectual effort into making change. But how prepared are we, and our leaders, to take the first steps along the road to dying or should we say to take the first steps along the road we will all travel? And what kinds of institutions do we need to help navigate the conversation?

First, leadership is vital. In the case of New York, political figures like Assemb. Amy Paulin of Scarsdale have been eloquent about the rights of patients. “If I am terminally ill, I should be able to choose to end my life calmly, peacefully and in a dignified way, at a time and in a setting I choose where I am surrounded by those I love” she has said.

Second, media reporting dispels myths. The so-called slippery-slope arguments of death with dignity, for example, presume the absence of safeguards. But states has included safeguards into their laws. California’s law, for instance, will allow terminally ill patients to seek medical aid in ending their lives as long as their life expectancy, as informed by two doctors, is less than six months. Additionally, the individual must complete a written request and two oral requests at least 15 days apart and must be deemed mentally capable of making decisions about their own health. Montana, Oregon, Vermont and Washington also have legalized the practice, while other states have opened the way for courts to make decisions on the issue. But without guidance within each state about the kind of end-of-life services and facilities that are available, it can be confusing to figure out the nuances.

Third, we need academic and policy centers. They would help provide context so that individuals are not left on their own to research options. A major policy center would bring together all the organizations that inform and educate on this topic so that the issue is better understood. Maybe we need a “surgeon general” for death and dying issues — a hub of the wheel for discussion and deliberation on this topic.

It is often at the most difficult and painful time that people are looking for answers about death. Had the California law existed earlier, it might have made life easier for Brittany Maynard, the 29-year-old San Francisco Bay Area resident who gained national attention for her decision to move to Oregon to take advantage of the state’s long-standing aid-in-dying law. She had been diagnosed with terminal brain cancer, but as a California resident, could not pursue end-of-life options at home. Maynard, who died in 2014, was left without her community at the worst time.

For most of us, the end-of-life topic is a mine-laden field of sensitive concerns layered with utter confusion. The painful truth is that most of us still avoid the subject, and our medical personnel seem woefully ill-prepared to address it. In a recent book, “Being Mortal,” physician Atul Gawande writes how the vast majority of medical schools provide little training for soon-to-be doctors on how to talk about dying let alone assist with it. Training guidelines also could be promulgated by a national center of research and policy.

The time for action is now. Technology, information and medical advances have ushered in a new era in dying. We now live longer and stronger. But that doesn’t mean that death is not a prolonged struggle — especially for those with chronic conditions like Alzheimer’s or with life-threatening diseases like cancer.

As New York and others move forward on this delicate topic, there are a host of ways to approach it, beginning first and foremost with public dialogue and private conversation. Myths and misconceptions surrounding documents like “advanced directives” and “do not resuscitate orders” need to be publicized and additional solutions devised so patients in nursing homes or assisted-living facilities can have their end-of-life wishes carried out, too. To often today a facility’s licensure rules trump individual priorities.

When it comes to death, ignorance is not bliss. It is conflict avoidance that rarely leads to a good outcome. Let’s take a cue from California, and move ahead.

Patrice Hirsch Feinstein is the former associate administrator of the Center for Medicare and Medicaid Services who testified at the inception of the hospice benefit and about long term care. She is a grief support facilitator. Tara Sonenshine is former undersecretary of state for public diplomacy and public affairs, and lectures at George Washington University.

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