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Welcome to our newsletter!
August 2022
Its purpose is simple:
- to keep you informed of news / information related to our growth
- to provide education about Medical Aid in Dying
- to provide progress updates on legislative actions
- to identify ways in which you can help

Laura's Story

LAURA'S GREATEST GIFT....

I am writing this letter to support legislation to enact Medical Aid in Dying laws in Florida.  I was with my father on May 7, 2022 when he drank a solution that ended his life. My father had Parkinson's Disease and a blood cancer disorder and lived in New Jersey where Medical Aid in Dying is legal.

When he could no longer care for himself and was completely dependent on caregivers his life lost all meaning and he was desperate to exit his situation.  His death was not a tragedy, his illness was, because my father's life centered around being physically active.  He played football in high school, college and the Marines.  He was a weightlifter, played the guitar and was a passionate gardener his whole life. He was the epitome of vitality and life. My childhood was filled with camping and hiking adventures my father took me and my brothers on.  The diagnosis of Parkinson’s at the age of 75 was worse than death for him.  In the 12th year of the illness it broke my heart to see him incapacitated.  The pain was almost too much for me to bear, to see my father who had been so filled with life and vitality unable to walk or reposition himself in bed.
 
He began talking with me about how to end his life with dignity a year and half prior to his death.  We did not know that MAiD was legal in NJ, and he and I talked about VSED, Voluntary Stopping Eating and Drinking. Dad quickly abandoned the idea of dying using VSED because he decided it would be too awful a way to die.
He was surprised that I was willing to help him end his life.  I told him the worst thing for me would be to see him languishing in a nursing home bed waiting to die. As he became more and more incapacitated he was obsessed with ending his life.  In one of our phone conversations, he told me the previous week had been really rough and he had tried to put a plastic bag over his head, but the bag was too small.  His next idea was to take a taxi to the NJ shore and drown himself in the ocean. It was a fantasy that comforted him, but it was totally unrealistic because he would not have been able to walk from the taxi to the water.
 
Eventually, I found out that New Jersey had Medical Aid in Dying laws and I found a medical practice that helped obtain the doctor approvals and streamlined the process for us.  The day my father was approved he called me with so much relief in his voice.  I was the only one in the family who he could talk with about his desire to die with dignity.  My ability to talk to him and help him achieve his goal of dying with dignity was the greatest gift I could ever give him and he was profoundly grateful to me.
 
I can think of nothing more sacred and compassionate than helping someone with a terminal illness die with dignity. We don’t let our pets suffer with incurable illnesses.  Why should we let our human loved ones suffer?
I adored my father and never wanted to lose him, but I am grateful with all my heart, that the lawmakers in NJ allowed my father the choice to be freed from the cruel illness that tortured him.  

Laura V., MSW

Share your story -- Here's how...
The power of a personal story goes well beyond simply relaying facts and data. It adds color, depth and credibility, and helps people connect with the message in a deeper, more meaningful way.
If you are a supporter of Medical Aid in Dying, then it's likely that you have experienced an event in your life that prompted your support.  If so, we would love to hear about your experience.  If you have questions or a story idea, visit Share your Story and let's get started. 

Progress Update

Our goal is to educate the public about Medical Aid in Dying (MAiD), build a strong network of advocates voicing their support, and work with the Florida State Legislature to get a Medical Aid in Dying law for Florida.  Since then we have written a draft FL End Of Life Options Act, based upon the medical aid in dying laws which exist in 11 other jurisdictions.

Our team created an aggressive schedule to educate all 160 legislators in the House and Senate by Nov 2022.  To date we have contacted over 120 resulting in numerous meetings, both in person or online with the legislator or their staff.  The result is very encouraging.  We have a Senator and a Representative both willing to sponsor our draft FL End Of Life Options Act, after they are re-elected in Nov 2022.  The Senator's office forwarded our draft Act to their drafting department to ensure the proper formatting for submission to the legislative subcommittee.   Florida Death with Dignity supporters continue to contact their state legislators to voice their support for a medical end of life option for Floridians. To find information about how to contact your legislators click here

During the hot summer months, in lieu of gathering petition signatures at outdoor events, Kate Parker, our Volunteer Coordinator, has directed each volunteer to contact legislators with their story of why FL should have a medical aid in dying option, and introduce our organization. The volunteers contact 6 legislators every other week from July through the end of October resulting in 40 legislators per volunteer.  From their effort, we already have gained invitations to visit legislators; while other legislators have responded with their support.  Make a difference - Join Kate's team!  Click here to join our Volunteer Legislative Team today.

Because of the success of our organization's presence at the Melbourne Spring Art and Craft Expo last March, we have our spot reserved at the Vero Beach Art and Craft Expo in Indian River County on Nov 12-13, 2022, and at the Tampa Art and Craft Expo on Dec 10-11, 2022. These are great opportunities to talk with hundreds of individuals and obtain signatures for our petition in support of a MAiD law.  

Catherine Wallace, our East Central Florida Regional Director, presented to the Florida Association of Retired Americans via Zoom in May 2022. This resulted in the BOD passing a resolution supporting a Medical Aid in Dying option. As Bill Saures, President, said "so retirees will have a possible choice".  He continued saying his 200,000 plus organization's members will help support our efforts!

Also in May, Catherine was invited to join the guest speaker, 
Eamonn W. Gunther, Esq., in a webinar titled "Death with Dignity and Difficult Ethical Questions" to the Professional Fiduciary Council of Florida. The Professional Fiduciary Counsel comprising 40 trust and estate lawyers were very engaging throughout the presentation, resulting in support and appreciation for our efforts.  Attorney Gunther followed up with a request for future presentations to other groups within their organization and stated “I look forward to continue work together and assist in any way I can”.

We presented to the Aging Life Care Association which used our presentation as CEU credits for all their Managers and Health Care providers.  Several of them joined our organization following this presentation. 

We have more events and guest presentations planned for this fall.  Visit our website, www.FloridaDeathWithDignity.org for recent news.

Please support our efforts!

Florida Death with Dignity, a 501(c)(3) non-profit grass roots movement, is determined to raise awareness and fight for expanding end-of-life options in our state. It is time for the Sunshine State to join other U. S. jurisdictions having a death with dignity law, to make it possible for Floridians with a terminal illness to access the same autonomy and individual freedom while dying as they enjoyed while living.  We educate the public, healthcare professionals, and legislative communities about patient-directed end-of-life care.  We need your support to continue. CLICK HERE TO DONATE.

Volunteer Spotlight

This month’s Volunteer Spotlight features Roberta Goode, the South Florida Regional Director at Florida Death with Dignity.  When her mother Rosemarie received a terminal cancer diagnosis, she carefully documented and communicated her wish to die in her own home with hospice care, surrounded by loved ones, and without pain.  Unfortunately, even the most powerful analgesic medications were no match for the excruciating pain of ovarian cancer, and Rosemarie endured nearly three weeks of suffering and indignity before she succumbed in 2018.  Since that time, Roberta has fought for state-wide access to medical aid in dying for qualified patients who request it.

Roberta has personally met with numerous FL legislators to help them understand the requirements and safeguards of a medical aid in dying law. She asked them to support the FL End of Life Options Act when it is submitted to the legislators for review.  Roberta is a key member of our Media Campaign committee which will be instrumental in engaging Floridians to voice their support to pass a medical aid in dying law.  Additionally, she leads the Communication committee which is responsible for accurate and timely messaging to support our mission.

A native Floridian, Roberta completed undergraduate and graduate degrees in biomedical engineering at the University of Miami, and is a member of the influential Academy of Science, Engineering and Medicine of Florida. Roberta tirelessly leverages her skills and reputation for the advancement of the Florida End-of-Life Options Act, in Rosemarie’s honor. 


Thanks Roberta!

Building our Core Team

A bright idea can come from anyone!  The more diversity we have on our team, the more unique perspectives we share.  Everyone deserves an Aid in Dying option, regardless of race, religion or political affiliation. We are committed to an inclusive core team that fully represents different cultures, backgrounds and viewpoints. Our group is actively looking for more volunteers to fill both leadership and non-leadership positions. Contact us at volunteer.fldwd@gmail.com for more information.

Education Corner

Who is most likely to use medical aid in dying?

Patients with cancer are the group most likely to use medical aid in dying in the United States, according to research published online June 16, 2022 in the Journal of the American Geriatrics Society.  For this study, the researchers aggregated data from 9 US jurisdictions with medical aid in dying (MAiD) laws that had publicly available records from 1998 to 2020.  During this time, 5329 patients died by MAiD, and 8451 patients received a prescription for MAiD.  The vast majority of patients who used MAiD had cancer (74%), but 10.9% had neurological diseases, and 15.1% used MAiD for other reasons.

Two typical questions concerning dementia and advanced directives:

Can my family member or a proxy request participation in medical aid in dying on my behalf (for example, if I am in a coma or suffer from Alzheimer's Disease or dementia?)

No. The law requires that you ask to participate voluntarily on your own behalf and meet all the eligibility criteria at the time of your request. 

Can physician-assisted death laws be used with advanced directives? 

No. Advance directives are documents that describe what you as a dying person want done (or not done) medically if you can no longer make decisions for yourself.  Aid-in-dying laws cannot be used under advance directives for this reason.

Call To Action – We need YOU!

 
Having your voice heard by the Florida legislature will be instrumental in getting our Florida End of Life Options Act passed in 2023.  Can we count on you to help? Your total commitment would be approximately 30min per month, but for those who have more time to spend, there are other activities for you as well.  It is easy, you will be sent specific directions for each month's email/phone calls.  And we are available to help or support you! 

If you reside in Florida, and insist that all Floridians with a terminal illness should have the right to a medical aid in dying option, then please click here and join our Volunteer Legislative Team today. 

Help us Build our Newsletter Reach!

Here's what you can do: Call two of your friends or relatives who live in Florida, and whom you believe are in favor of MAiD. Ask them if you can subscribe them to our quarterly newsletter. If they agree, click this link and fill in their name, email address and zip code.

I am always available to answer questions, and provide guest speakers for your group(s). You may contact me at tr.fldwd@gmail.com.



Sincerely,
Tony Ray

 
Copyright © 2022 FL Death with Dignity, All rights reserved.


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