The VSED Handbook

“VSED is a marathon, not a sprint, and like a marathon, takes lots of preparation.”

 -Kate Christie

Kate Christie’s The VSED Handbook, a Practical Guide to Voluntarily Stopping Eating and Drinking is a timely addition to an ever-growing body of literature and increasing discussions about end-of-life choice.  End of Life Choices California receives numerous queries about VSED and it is one of the most viewed pages on our website.

The VSED Handbook, published following the VSED death of the author’s mother, is a guide to how to control the timing of one’s death by voluntarily stopping eating and drinking all foods and fluids. VSED, as the author explains, is an age-old method of dying, legal anywhere in the U.S. It is used mostly by elderly, frail individuals suffering from a poor quality of life, who don’t have a 6 month terminal diagnosis and are not eligible for hospice care or medical aid in dying (MAiD), if legal in their state. It’s the ultimate act of self-determination.

Immediately, I found many parallels and useful tips that can be offered to our clients, most of whom are exploring all end-of-life options. Here are just a few:

 

  • Counseling clients and their family members regarding the individual’s right to choose. Helping the team come to terms with the fact that their loved one understands they are giving up some possible good days in order to avoid bad days, weeks, or months, due to the unrelenting progressive nature of their disease.
  • The author emphasizes there are numerous ways to plan ahead and prepare well, including arranging for 24 hour in-person support for the duration.
  • Creating the atmosphere, preparing the physical space where the person will ultimately die. Having a choice, with near-certain dates, gives family and friends the opportunity to connect deeply with their loved one, and offer heartfelt goodbyes.
VSED Handbook, Kate Christie

Again, Kate emphasizes for us, dear readers, that individuals choosing to use VSED are making the choice to leave this world a little early, on their own terms, due to the reality that their illness will cause them to experience progressive losses of their selves, their personhood, their autonomy, and their dignity, and they are choosing to avoid these losses.

I highly recommend The VSED Handbook to anyone interested in learning more about this end-of-life option. This book is a love story, a guide, a reality check, and ultimately, an entire tool box both for the individual who is considering using VSED and his or her  loved ones.

If you, or someone you know, are interested in learning more about VSED, please call 760-636-8009 or contact us here. One of our highly trained volunteers will be able to discuss this option with you and answer all your questions. To learn more about this excellent resource on our website, click here.

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Lynne Calkins is a founding director and current board member of End of Life Choices California.  She is also honored to serve as an active client volunteer. She developed EOLCCA’s client services volunteer program, launched EOLCCA’s MAiD Bereavement Group, and is a frequent speaker to a wide variety of audiences on end-of-life options. She campaigned vigorously for the passage of California’s End of Life Option Act in 2015 and is eternally grateful for the legacy of Brittany Maynard that helped make this law a reality for all Californians. She is passionate about the individual’s right to choose a peaceful death at the end of life.

EOLCCA supports a strong team of experienced volunteers throughout the state, ready to help anyone, anywhere in California with information and support regarding all end-of-life planning and choices, including aid in dying through the California End of Life Option Act. You can find comprehensive information on our user-friendly website. EOLCCA is a 501(c)(3) nonprofit organization, and we rely on donations from individuals and foundations to enable us to offer these services at no charge to our clients. To support our work, find volunteer opportunities, or request an educational presentation for your group, please visit ways to help.  Thank you!

MAiD MYTHS

In California, we are very fortunate to have won the right to medical aid in dying (MAiD). With the California End of Life Option Act (ELOA) in effect since June 2016, MAiD has been legal and available for more than seven years. The law provides the ability of a physician to write a prescription for life-ending medication for a terminally ill patient, and for that patient to self-ingest the medication. Since California’s law was passed by a legislative vote, and not by a public referendum on the ballot, surprisingly few people in a state as large as ours know about this option.

Additionally, because we live in a time of widespread misinformation and disinformation, EOLCCA receives a lot of inquiries from people who believe many of the myths circulating about medical aid in dying.


The purpose of this article is to dispel those myths and provide you with the facts, according to the ELOA.

Fact versus myth road sign with two arrows on blue sky background. White two street sign with arrows on metal pole. Two way road sign with text.

Myth #1: It is complicated to access MAiD.

FACT: It is not complicated once you have the required two physicians to work with (an attending physician and a consulting physician). Often the attending physician has a consulting physician already at hand. The law requires oral and written requests of two physicians who agree that you are eligible (meaning life expectancy of six months or less), just like the eligibility requirements for hospice. One of the services we provide to people who reach out to us is helping them talk with their own physician about prescribing and, if the physician will not participate as allowed by the law, we help them find a new physician who will prescribe.

Myth #2: MAiD requires too much paperwork.

FACT: The requesting patient only needs to complete a one page form. The REQUEST FOR AN AID-IN-DYING DRUG TO END MY LIFE IN A HUMANE AND DIGNIFIED MANNER form can be found on our website.

Myth #3: You must open and mix 100 capsules of medication.

FACT: This used to be the case, but now the medication arrives at the home in the form of a powder in a small bottle, dispensed from a compounding pharmacy. It consists of a combination of medications to which two ounces of water or apple juice are added, just prior to taking. Once mixed, it becomes a milk-like liquid. After consuming all the medication within two minutes, the patient generally falls asleep within five minutes and goes into a deeper and deeper sleep, and dies peacefully, the way most individuals say they wish to die. If the patient cannot swallow, there are other ways to self-ingest the medication according to the law. A knowledgeable physician can discuss these options.

Myth #4: A medical professional (MD, RN)  must be present when the MAiD medication is taken.

FACT: A person may take their medication with anyone present whom they wish. Anyone, including you, may mix the medication. But we feel that no one should die alone. We provide experienced, highly trained volunteers who are available to be with clients and their families to offer support, if requested.

Myth #5: You must have resided in California for at least six months in order to access MAiD.

FACT: The ELOA says nothing about the length of the residency requirement. Any place of residence in California, whether on your own or with family/friends, is sufficient to seek medical care in the state.

Myth #6: MAiD is euthanasia.

FACT: Euthanasia involves the administration of lethal medication to an individual by a medical professional. MAiD laws in the US require the individual to self-ingest, by swallowing or pushing a plunger by themselves into their digestive system.

Myth #7: MAiD is suicide.

FACT: MAiD allows an individual who would otherwise wish to continue living but cannot due to a terminal diagnosis without any chance of recovery, to plan for the day, time, and place when they may die peacefully. Suicide is committed by someone who is usually not dying and often suffering from mental illness. The ELOA states MAiD is not suicide in four separate places in the law.

Myth #8: Life insurance will not pay out for someone who uses MAiD.

FACT: By law, life insurance, wills, and contracts are unaffected by someone who chooses MAiD. The death certificate states the cause of death as the underlying disease (cancer, heart failure, COPD, etc.), never MAiD or suicide.

Myth #9: If I go through the process and receive my MAiD prescription, I must take it.

FACT: You can always change your mind, even on the planned day. You are in control. One-third of Americans in states with medical aid in dying who obtain the MAiD prescription never take it because they can relax significantly, knowing they have the medication if they ever need it.

Please feel free to call or email us anytime with questions or concerns at 760-636-8009 or info@endoflifechoicesca.org. Our volunteers are available to help you and we do not charge for our services.

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Lynne Calkins is a founding director and current board member of End of Life Choices California in addition to serving as an active client volunteer. She developed EOLCCA’s client services volunteer program, launched EOLCCA’s MAiD Bereavement Group, and is a frequent speaker to a wide variety of audiences on end-of-life options. She campaigned vigorously for the passage of California’s End of Life Option Act in 2015 and is eternally grateful for the legacy of Brittany Maynard that helped make this law a reality for all Californians. She is passionate about the individual’s right to choose a peaceful death at the end of life.

EOLCCA supports a strong team of experienced volunteers throughout the state, ready to help anyone, anywhere in California at no charge with information and support regarding all end-of-life planning and choices, including aid in dying through the California End of Life Option Act. You can find comprehensive information on our user-friendly website. EOLCCA is a 501(c)(3) nonprofit organization and we rely on donations from individuals and foundations. To support our work, or request an educational presentation, please visit ways to help.  Thank you!

Can We Talk?

courtesy of Bizarro Comics

They say there are only two things we absolutely have to do: Die and pay Taxes.  April 15 is traditionally Tax Day, and now the day after, April 16, has been designated National Healthcare Decisions Day, in an effort to get people to plan for their dying as well as they do for their taxes.

Elephant in the Room

Due to this pandemic year of hearing daily numbers of Covid deaths and constantly seeing scenes of people suffering and dying, we have a fresh awareness of death.  This heightened awareness is actually helping us talk about death and prompting many families to discuss what they want their dying to look like.  The “elephant in the room” (that thing that we are all thinking about, but not talking about), is actually being acknowledged much more now.  It remains to be seen if 2021 will turn out to be the year more Americans than ever will have embarked on advance care planning and completed their advance directives (ADs).

What is important to you?

If you are serious about telling your loved ones what you would want at the end of life, we at End of Life Choices California (EOLCCA) are here to help you get the conversation going (the most important part) or show you where to find the appropriate forms and what to do with them.  It’s what we do.

Ask yourself: What is most important to you?  What matters most to you?

We are here to help you share with your loved ones exactly what you would want if you were unable to speak for yourself.  Completing an AD is a “game changer” for you and your family; it is a gift, it is liberating.

Let’s bring that “elephant” out of the closet and shine a light on dying:  Let’s admit that someday we are going to die, hopefully not soon, but that we all eventually die.  Let’s get comfortable talking about how we would like to die; where we want to be, who we would like to be present.  Let’s have that conversation about death with our loved ones and write down what we would want in an AD.  The sooner we do this, the more likely it is that our wishes will be honored.

Our family and friends will be grateful to have had the opportunity to help us achieve our goals.

Having the conversation about end of life choices
Take these steps today!

Please go to our website where you will find an advance directive form to download and complete.

Sign it, have it witnessed, and give copies to your loved ones and your physician.

If you have any questions or would like help completing an AD, please email us at info@endoflifechoicesca.org and let us know how our volunteers can help you.

Barriers Persist in California and Elsewhere

The barriers to using medical aid in dying remain so high that in one state, pharmacists are fighting back and helping terminally-ill individuals find physicians willing to help. 

We know this because of a recent Kaiser Health News story by JoNel Aleccia. Aleccia is the same reporter who covered the first article about the Colorado physician, Dr. Barbara Morris, who was fired last August 2019 by her employer, Centura Health Corp.  Centura, a Catholic and Seventh-Day Adventist-run health care system, fired Dr. Morris for agreeing to prescribe life-ending medication to her terminally-ill, End of Life Option Act eligible patient, Neil Mahoney. We highlighted that story in our September 3 blog Barriers to Medical Aid in Dying Even When it is Legal.  Not only did Dr. Morris lose her job, she lost care of her patient, her office, and her malpractice insurance.

Aleccia wanted to know what happened to the patient, Neil Mahoney?  What happened to Dr. Morris? She takes us to Golden, Colorado where Mahoney and Dr. Morris filed a lawsuit; the case is pending.  Due to his declining health, Mahoney had to leave the suit, but was able to gain access to his state’s medical aid-in-dying law thanks to a pharmacist who reached out to him as part of “a network that quietly connects terminally-ill patients in Colorado with doctors willing to follow the law”.  

This compassionate group is called Dying with Dignity of the Rockies, Aleccia informs us.  We know of at least two pharmacists in California who fill aid-in-dying prescriptions who have indicated they are only too happy to match patients with physicians they know are willing to help.  

As Colorado pharmacist Rodney Diffendaffer points out, there are many doctors willing to help, but they don’t want their names on a public list.  California physicians feel the same, and we understand and respect that. He also points out that it is the patient’s choice to have the aid-in-dying drugs; no one else should have a say. 

The lack of physicians willing to prescribe medical aid in dying due to pressure from employers is just one of the many barriers that persist in California as in Colorado and the other states.  This reluctance may be based on religious or moral reasons, or fear of being fired or of censure by their employers or colleagues. Whatever the reason, as Dr. Morris said, “medical-aid-in-dying should be part of a continuum of care for dying patients”.  We agree with her wholeheartedly.

By late September, and thanks to a Colorado physician who had prescribed MAID only once before, Neil Mahoney had his medication in hand. Neil expressed great relief.  Now he was back in control of his living while dying, and had many plans to make: who will care for his dog, his cat, and what about his other belongings, while planning how to say goodbye to friends and loved ones. Neil took his life-ending medication after he became more frail, but while still able to swallow, a requirement under the law.  He took his medication on the evening of November 5, surrounded by his large and supportive Catholic family. He fell into a deep sleep and died an hour later, peacefully, as was his wish. 

What about Dr. Morris?  Her suit is pending in the courts, and she has found another place to practice medicine. When notified of Neil’s peaceful death, she was grateful he had found a way to access the law while also regretful that the religious bias of her former employer had prevented her from helping him. She went on to say that as a memorial to Neil she, and physicians and pharmacists like her “will continue to advocate for care focused on patient values and wishes.”

The Colorado physician who prescribed medical aid in dying for Neil stated that it is her job to relieve pain and suffering and to inform her patients of all the choices in dying available to them. 

This continues to be the mission and work of End of Life Choices California: informing Californians of all their end of life choices.  If you would like to help us carry on this mission, please make a donation here or complete a volunteer application here – or do both!  We need volunteers well placed throughout this massive state of nearly 40,000,000 people. 

A special thank you to JoNel Aleccia for her factually correct, excellent reporting on this important issue!

 

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This Belongs at the Top of Your Summer Reading List

“A straightforward, well-organized, nondepressing guide to managing the run-up to one’s inevitable demise.”

Amanda Urban, Publisher’s Weekly

 

“The surprising comfort of a new book about death”

Michael Dirda, The Washington Post

No, you won’t survive your death, but you can live until the very last moment without the pain and humiliation that inevitably accompany an over-medicalized dying process.” 

Barbara Ehrenreich, author of Natural Causes

She’s done it again. 

New York Times best-selling author of Knocking on Heaven’s Door, Katy Butler, has penned a stunningly effective and sublimely practical compendium on how to create a good end-of-life. Something few think about, but everyone encounters. 

Ms. Butler offers her readers uncommon insights drawn from her own experience of helping her parents pass peacefully. You’ll discover complex ideas to ponder along with critical steps to follow as you or a loved one contemplate your final approach to the mystery of life. Death. 

She shares inspiring stories. She answers primal questions about weighing medical risks; preparing your family; avoiding a hospital emergency room; building resilience and creativity; tackling essential paperwork and settling your affairs and taking advantage of choices available to you. In California, we can turn to the End-Of-Life Option Act to guide our path. And to End-Of-Life Choices of California (EOLCCA) to gain access to vital information and deeply personal support when needed.

Filled with case studies and real-world examples of both good and bad outcomes, The Art of Dying Well delivers excellent resources to navigate our very complex medical system. Pay close attention to “Ways to Prepare” in every chapter, along with her excellent section on “Coping with Dementia.” Here, she even provides us with an outstanding dementia directive letter.

In Chapter 4, Awareness of Mortality, Ms. Butler presents an efficient tool to enable you to face a serious diagnosis with a poor prognosis: “Understanding the Trajectory of Your Illness.” She encourages us to use this pen-and-paper method to improve understanding, command of details, and to reduce our feelings of helplessness. What’s more, a physician is likely to respond well to your finished product because it will be concrete yet editable.

Ever-Growing Movement

Ms. Butler takes a gently adversarial approach to our health care system with justification. She was dragged “through the mill” with her parents’ long and convoluted illnesses. Her deep and wide research on the business of dying puts her in a league of frontline experts in this ever-growing movement of end-of-life choices and dignity in death.

Author and Advocate, Katy Butler

Further, she staunchly advocates for patients and their families to be seen, heard and understood.  

If you do not have a family member or friend to advocate for you, begin by reading and rereading this book. Mark the pages with sticky notes. Jot down questions in the margins. Take it with you to doctor visits. Consider The Art of Dying Well as your surrogate advocate until you can gather your human network.

 

Giving Life Meaning

In the beautiful spirit of Atul Gawande in Being Mortal, Ms. Butler urges us to clarify over and over what’s important to us, what gives our lives meaning, and to live those values daily. Until we can’t. She counsels us to compel the medical community to hear us, to act in our self-interest, not theirs. If not, we’re empowered to find another doctor or request a palliative care consult. 

Finally, I enjoyed the inventive ways Ms. Butler explains to successfully age in place, why picking a younger doctor matters, how to communicate honestly with medical professionals, and how to make your death a sacred rite of passage rather than a medical event.  

The Art of Dying Well belongs at the top of your summer reading list.

 

Article by Lynne Calkins
Edited by Carolyn L. Smith