…that’s up from 13 million when Vermont’s Act 39 was passed.

Our persistent work in Vermont to make sure people have access to end-of-life choice is having an impact across the country. Nine jurisdictions have medical-aid-in dying laws providing end-of-life choice. Maine may soon become the eighth, having just voted to approve the Maine Death with Dignity Act. Twenty-four more states are considering the legislation.

In their order of adoption, these seven include: Oregon, Washington, Vermont, Colorado, California, Hawaii, and New Jersey plus the District of Columbia.

In 2009, Montana’s Supreme Court ruled that nothing in the state law prohibits a physician from honoring a terminally ill, mentally competent patient’s request by prescribing end-of-life medication. There have been bills introduced both for and against but none have yet been passed into law. 

Impact on End-of-Life Care:  
Since so many more people can now choose medical aid in dying, medical personnel and educators are paying increased attention to end-of-life choice and to counseling patients facing serious or terminal illness. Yet this is still the exception, not the rule. Several recent books delve into the problems patients face when the medical system assumes that extending life with more tests and more procedures is always the right approach. We provide a growing list of these books as well as Book Reviews online.

Medical Decision-Making: 
While reading these books, you can’t help but begin to ask how would I make decisions differently to avoid spending my last months in medical procedures? Or, what is most important to me and how can I make my remaining time meaningful? The PCV team researched what resources are available to help us navigate medical decision-making. It was a complete surprise that we did not find a succinct resource for patients. So, we developed our own.

This fold-up pocket guide is intended to be a concise reminder of the important questions to ask and information to convey to your medical and care team. Feel free to request bulk copies to distribute within your community. A one-sheet PDF flyer version is also available for download.

Dementia Directive: 
In most of the community meetings we have hosted, people ask us whether they can direct the use of medical aid in dying in advance, specifically in the case of dementia or Alzheimer’s. The short answer is no. However there are steps you can take to help avoid prolonged life with severe dementia. We address that issue in another recent publication, The PCV page with the Guide to Advance Care Planning for Dementia also provides a link to an addendum you can add to your own advance directives.

Community Work:
We truly appreciate hearing from PCV’s supporters like this Vermonter who confirms that the video stories we produce make a difference:  

“I watched every video on the PCV website.  It gave me great comfort and knowledge about what to expect as my husband and I navigated the Act 39 process.”  -- C.H.
 
Your PCV team continues to work on developing more informative publications and videos as well as providing community programs and medical education. The team includes doctors, nurses, writers, lawyers, researchers, and people with medical-aid-in-dying experience. 

We have a number of programs scheduled for the fall. If you would like to keep up to date, please sign up for our email newsletter. 

We only do fundraising twice a year, so this is our spring appeal...

​Perhaps you came across the May 13, 2019 opinion piece in the New York Times entitled, "Can Doctors Refuse to Treat a Patient?" which goes on to answer its rhetorical question with, "The Trump administration says they may, if treatment would violate their religious views."

The Times article discusses a proposed new federal rule from the US Dept of Health and Human Services. We want to take this opportunity to confirm that…
 
The proposed new rule will change nothing here in Vermont regarding Act 39.
 
PCV watches for rules like this in case there is action that needs to be taken.

Background: Since the 1970's numerous laws have been adopted that enable medical professionals to decline to provide specific medical services including abortion and medical aid in dying. These laws were adopted under both Republican and Democratic administrations. The new proposed rule would give stronger enforcement capability to the Office of Civil Rights of the US Dept of Health and Human Services. In other words, medical professionals who have religious or moral objections to providing certain kinds of services will have a strong ally in the US government to help them avoid any consequences from refusing to provide services that conflict with their beliefs.

Act 39: Vermont’s Act 39 already makes it voluntary for physicians to prescribe medical aid in dying for patients. Therefore, the proposed new rule would have no impact.

Federal Laws Relevant to Act 39:
 

1. Assisted Suicide Funding Restriction Act of 1997 This law says that federally funded health centers, of which we have several in Vermont, are not permitted to pay for services related to medical aid in dying. As a result, for example, patients of the Veterans Administration who want medical aid in dying would have to find and pay for a private doctor for this service. This has been the case since Act 39 was enacted. The new proposed rule changes nothing.
2. The Affordable Care Act (ACA) includes a provision preventing institutions that receive federal funds from discriminating against employees who refuse to participate in medical aid in dying. Since Act 39 states that participation by medical personnel is voluntary, the ACA provision has no impact. The new proposed rule changes nothing.

 
Alarming Nevertheless: The proposed rule is focused on abortion, but it also relates to medical aid in dying and contraception. Certain definitions may be expanded to allow less coverage for women’s health by insurers and employers. The rule is alarming because it puts doctors’ beliefs ahead of patient needs with the result that patients have to be even more vigilant to make sure that they learn of all their options and are prepared to advocate for their health care needs.

A good in-depth analysis is provided by Health Affairs journalist Katie Keith in "Trump Administration Prioritizes Religious and Moral Exemptions for Health Care Workers."