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

 

The Elephant In The Room

Photo Credit: Bizarro Comics

CAN WE TALK ABOUT DYING?

By Lynne Calkins

“Make friends with death. Get comfortable with it, and you will have a much fuller, happier life.”  Seriously? Sounds kind of weird, doesn’t it? Who wants to be friends with such a taboo subject? Sounds kind of scary, maybe makes us a little sad.

Death is definitely “the elephant in the room” that no one wants to talk about, especially while we are young and healthy but also when a loved one is seriously ill.

I recently heard Dr. Bob Uslander, of Integrated MD Care in Del Mar, CA (and a member of End of Life Choices California’s Advisory Board) whom I greatly admire say, “make friends with death” on his regular podcast.  Dr. Uslander is considered an expert on death and dying and living. He is a palliative care physician who helps people with chronic, serious illnesses feel as good as possible and enjoy the last chapter of their lives as much as possible.  Often, these are people who, even though they do not want to die, accept that it is inevitable, and they talk about their dying, that “elephant in the room,” and how they envision it. They have taken control over their dying; they feel lighter, empowered.  “Dying is the one thing we all do,” he says, so why not embrace it?

What does he mean by “get comfortable” with death?  I believe he means that because we all die, we should bring this topic out of the closet, shine a light on it, and talk about how we would want our dying to be.  I know that for me, like most people, I would like to die at home, with my husband at my side. I have talked about it aloud to my spouse and children and named the person to speak for me if I am unable to do so.  I’ve written it down in an Advance Directive (AD), signed it and had it witnessed. I have given copies to my husband, my children and my doctor; it is in my medical chart. This document clearly directs my doctor and family as to what I want if someday I cannot speak for myself.

I can honestly say that once I had done the above I immediately felt lighter, happier, and liberated; knowing that if something unexpected were to happen, and I was unconscious with no hope of recovery, my family will know what is important to me.  They will try to get me home. What my family doesn’t realize is that this gift to them helps guide them, should this situation ever occur.

There are numerous accounts of people who have said they want to die at home, but sadly, they never told their loved ones, never wrote it down, so when the time came that they were unconscious, from stroke or car accident, they died in a hospital, in an ICU, with tubes in every orifice of their body, because no one knew what they wanted, and the default went to the medical personnel.

Let’s acknowledge “the elephant in the room”:  Let’s admit that we are going to die, hopefully not soon, but that we will 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 family, loved ones, and physician and get comfortable with that “elephant in the room.”  The sooner we do and write down our wishes in an Advance Directive, the more likely it is that wishes are respected. Our family and friends will be grateful to have the opportunity to help us achieve our goals.

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 physician.  If you have any questions, or would like help completing an Advance Directive, please email us at info@endoflifechoicesca.org and let us know how we can help you.

With special thanks to Dan Piraro for permission to use The Elephant in the Room to help us illustrate so clearly the complexity of discussing our end of life wishes.

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End of Life Choices California provides information and personal support regarding California’s End of Life Option Act and all other legal end-of-life options to the medical community and to the public.