REQUEST SUPPORT | DONATE | BLOG

Last Flight Home

“It was like light from a lighthouse,” says David Timoner of the call he got from End of Life Choices California (EOLCCA) when he and his family were facing the toughest time of their lives.

“The wisdom we got from those final days we will carry with us forever.”

Ondi Timoner and Eli Timoner in 'Last Flight Home'

David’s 92-year-old father Eli was in the hospital. He had reached a point at which advanced COPD, CHF, and other health issues had become intractable and meant he would have to transfer to a care facility. But Eli knew he wanted to die at home surrounded by those he loved, and he asked about medical aid in dying. His family understood and supported his decision but didn’t know where to turn for help. Vaguely aware of a California law, they still had no idea what to do next.

“The day is a blur,” David says. “I think I googled something like ‘How to end your life legally . . .’ and EOLCCA popped up right on top. I called the number, left a message, and had a call back within the hour.” Lynne, the volunteer at the other end of the phone, was everything David needed at that moment: “Calm, empathetic, and with the answers to all of our questions. Lynne explained how the California law works and reviewed the eligibility requirements.” These, in brief, include the requirement that the patient must be diagnosed as terminally ill, with a six month or less prognosis by two doctors, must make the request himself, be able to self-ingest the medications, and be of sound mind. “Lynne also recommended that my father consider enrolling in hospice care,” David says. She was able to recommend two hospices in our area that she knew had doctors who participate in medical aid in dying. We chose one and brought Dad home.”
Ondi Timoner, an award winning documentary filmmaker, decided to record those days during the then 15-day waiting period mandated after Eli first requested aid in dying medication from the hospice doctor, until he could receive the prescription. She initially intended just to have a family remembrance. After all was over, however, she realized she had the makings of something important.

Ondi’s remarkable film, Last Flight Home, tells the full story. In the ensuing weeks, the Timoner family – Eli and his wife Lisa, their children David, Ondi and Rachel, their grandchildren and friends–would spend invaluable time at home together celebrating Eli’s unique life’s journey. The profound, intimate, loving farewell afforded Eli and his family by California’s medical aid in dying law, is the outcome we at EOLCCA wish for anyone who reaches out to us for similar help and information. That this Southern California family’s experience would be recorded by daughter Ondi and edited into a powerful documentary now being released to widespread acclaim, is a visual testament to the value of medical aid in dying.

At a screening in New York, daughter Rachel told a New York Times interviewer, “And then there is the idea that this film could change laws.” Many of us with EOLCCA worked hard to get the California law passed, and we continue to support expanding the law throughout the U.S. To have had a part in helping Eli Timoner and his family gain peace at his life’s end, and to know that they now join the fight for everyone to be able to make such a choice, is doubly gratifying for EOLCCA.

California is one of a small number of states fortunate to have a law which enables its residents to access this compassionate end-of-life option for the terminally ill. But, from call after call we receive every day, it’s clear that few terminally-ill Californians are even aware of the law, or know enough about it to even begin the process of requesting medical aid in dying from their physician.

Last Flight Home is a film we hope will receive all the top accolades in the film industry for its many-layered and beautiful story. The story behind the film has been well documented in the New York Times. It is one we urge our readers to see as soon as possible and then recommend to friends and family everywhere.

‘Last Flight Home’ is a film we urge our readers to see and recommend to friends and family everywhere.

EOLCCA Lynne with 'Last Flight Home' Director Ondi Timoner and family

From Left to Right: Lynne Calkins with Ondi Timoner, Rachel Timoner, and Lisa Timoner at a recent screening

Asked for advice she might now pass on, Ondi says simply, “Be with your loved ones now. Don’t wait for them to be dying. But there is an incredible quality of life when a person is transitioning. The wisdom we got from those final days we will carry with us forever.”
Perhaps the most profound lesson Eli’s family learned was the simplest. It has to do with summing up life itself – as we humans do so often by looking at accomplishments and honors and all those treasures we accumulate. But no, says Ondi Timoner as she reflects on her family’s journey and the creating of Last Flight Home.

“Look at it as a way to measure our lives,” she says. “Measure our lives with love.”

We hope Last Flight Home will reach the countless families and individuals in situations similar to that of Eli and his family, so that others may learn about the California law in time to make a difference in their own end of life if facing a terminal illness. Our EOLCCA volunteers are always ready to help. Call us at 760-636-8009 or visit our website.

Click here for current showings in LA, San Francisco, Berkeley, Mill Valley, and a few additional cities before its Paramount Plus release in late November 2022.

++++++++

A lifelong newspaper and magazine writer, EOLCCA Board Member Fran Moreland Johns has published fiction, nonfiction, and several books. Her focus on end-of-life issues includes many volunteer years, numerous articles and one book, Dying Unafraid. She holds a BA in Art from Randolph-Macon Woman’s College, and currently blogs at Medium.com and franjohns.net. Her short story collection, Marshallville Stories, was released in April 2022.

How We Help Our Clients

When I first joined EOLCCA’s Board of Directors, I decided to go through the volunteer training so I could get a handle on our core work: to help Californians learn about their legal end-of-life options, and to help facilitate their choices. The training was excellent. Afterwards, I spent several blocks of time  being “on call” – to answer initial questions and give people the resources and guidance they requested. I told my colleagues I would probably never “attend” a death because I had not done it before, and I wasn’t sure I was emotionally prepared. I did leave one small loophole: I would do so if other volunteers were not available and our client was ready to take the medication.

Severe pain

Well, that day came! We got a call from Kaiser Permanente’s End of Life Options Program with information about a patient who qualified for medical aid in dying and he wanted to take the medication as soon as it was delivered. Billy (the name I will give him) had cancer with metastases to his bones and brain. He was in severe pain. The medication was on order. He  lived alone and his only brother lives on the east coast. The Kaiser EOL coordinator asked if  EOLCCA volunteers were available to help him through the process.

Since most of our local volunteers were busy with other clients, I agreed to do it, with the understanding that a more experienced volunteer would be available to help me on the day Billy planned to take his medication. I was assured that would happen, since EOLCCA’s practice is to always have two volunteers attend a death together. 

Relieved and… grateful

I visited Billy a few days before he planned to take the medication. As someone who would be at his bedside on the day he takes the medication, I wanted to get to know him a bit, and I wanted him to feel comfortable with me. He gave me a short synopsis of his life. Since we were both avid readers, we exchanged information about our favorite authors. I also reminded him that at any point in time, he could simply decide not to take the medication. He told me that if he had had the medication at that moment, he would take it. He had thought a lot about it, and he was ready. He was relieved and grateful that he lived in a state where medical aid in dying is legal.

Still sure

On the day of the planned death, an experienced volunteer became available and we arrived in Billy’s room shortly after the Kaiser pharmacist hand-delivered the prescription. He had already explained the medication process to Billy. Billy took the anti-nausea medication, the first step in the medication protocol. We again reminded Billy that it was his choice to take the subsequent life-ending medication or not, but once he did, there was no turning back. He told us he was still sure of his decision.

volunteer at bedside
Having time for last goodbyes

Billy’s brother requested a final FaceTime visit with him to say good-bye, and Billy agreed. During that last conversation, Billy gave him some direction about his financial affairs, and asked about his nephew. His brother, somewhat stunned, told him how his nephew was doing and to just make sure he was as comfortable as possible. It was a tearful call, but an important one, and deeply appreciated by Billy’s brother.

After Billy took the final medication, he chatted with us, mostly about his love of books. After ten minutes, he fell into a deep sleep, and passed away peacefully in about an hour with the two of us by his side.

At the end of the day, I felt honored to have had the privilege to support Billy in his choice to use medical aid in dying, and to witness his passing. From the first phone call through the day of Billy’s death, we spent many hours on his case–and this is not unusual. I was also fortunate to participate in the very core of the work we do at EOLCCA: to help our terminally-ill clients find relief from their suffering, and achieve the peaceful, dignified death they want.

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

Stewart Florsheim serves on the Board of Directors of End of Life Choices California and chairs its Outreach and Education Committee. He has been an activist and leader in the end-of-life choice movement in California since 2003. During that time he was deeply involved in the effort to successfully pass the California End of Life Option Act in 2015. Stewart has given many presentations on end-of-life choice, including on radio and TV. 

EOLCCA supports a strong team of experienced volunteers throughout the state, ready to help anyone, anywhere in California free of 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. To support our work, or request an educational presentation, please visit ways to help.  Thank you.

Talking to your Doctor about MAID

When your plans include California’s End of Life Option Act

 

Medical aid in dying is a legal end-of-life option in 11 US states and jurisdictions, including California. Aid in dying has been available to Californians since 2016 via the California End of Life Option Act (ELOA).

Talking to your doctor

Medical aid in dying is a sensitive and personal topic. While I am not currently facing a terminal condition, I take comfort in knowing medical aid in dying would be available if I needed it in the future. Some of you may be in a similar situation. However, others of you may be nearing the end of life with a life expectancy of less than six months.  

If you qualify for the ELOA, these are crucial first steps:

Be specific when talking with your doctor.  

While prescribing aid in dying is legal in California, not all doctors choose to participate. So it’s necessary to confirm whether your doctor supports medical aid in dying. A direct and concise question like: “Will you prescribe medical aid in dying for me using California’s End of Life Option Act?” makes your request unambiguous. You may also choose to first acknowledge all that your doctor has done to extend your life, using a statement like: “I appreciate all the support you’ve given me; yet I’ve made peace with understanding my death is nearing and need to ask one more thing of you . . .” 

Ensure your request is documented in your medical record.

Communicating your request to receive aid in dying is a key requirement of the ELOA. So even if your doctor declines to prescribe such aid, following up with an ask that your request be written down and noted is recommended. (A recent court challenge to the ELOA removed the requirement for doctors to document the request.) If your doctor declines and does not offer a referral, you may reach out to End of Life Choices California and a volunteer can direct you to nearby providers known to support aid in dying. When your doctor accepts your request, and documents it, there’s often an opportunity for a heartfelt conversation about what this means for you. 

For those of you who would want access to medical aid in dying if needed in the future, firstly, ensure you have completed an Advance Directive. In addition, talking with your doctor to express your wishes remains key. 

These are important first steps: 

* Schedule a doctor’s appointment specifically for an end-of-life planning discussion.

Physicians often get behind schedule and can seem rushed. Thus getting an appointment just for an end-of-life planning discussion is a good strategy. When scheduling, you can specify your planned topic, or simply make it a general check-in. (If you use Medicare, your doctor will be reimbursed specifically for an end-of-life planning discussion.) 

* Avoid generalities and use specific language.

Relaying your awareness and understanding of California’s ELOA is a great way to start the conversation. Then staying focused with a direct question like: “If I ever had a terminal diagnosis and was eligible for medical aid in dying, and I asked you to prescribe the medication for me, would you do so?” will bring clarity. 

Being direct about a sensitive and personal topic like aid in dying can be intimidating. But the more clearly you express yourself, the more likely your doctor is to really “hear you” and understand not only your request, but also your priorities and values. 

Refer to this material on our website for additional information about the ELOA and medical aid in dying or call and ask for a volunteer to assist you.       

+++++++++++++++++++++++++++++++++++++++++++

Becky Oliver is a volunteer with EOLCCA.  Her professional life has been spent as part of Silicon Valley’s tech industry.  Outside of work, her personal passions include contributing to end-of-life causes, with a specific interest in the nature of care for the aging and those nearing 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.  Please find comprehensive information on our user-friendly website at www.endoflifechoicesca.org. To support our work, please visit www.endoflifechoicesca.org/ways-to-help/.  Thank you.

 

The Day I Die: The untold story of assisted dying in America

Anita Hannig’s The Day I Die: The untold story of assisted dying in America has taken a well-deserved place as the definitive book on medical aid in dying. Want information on how it works? On the history of the assisted dying movement? On the future of legal death with dignity laws? Hannig covers it all, in a book that reads like a personal, informal conversation with the author.

In a recent conversation…

Hannig spoke recently with this reporter about The Day I Die – which is filled with stories of her own experience as a hospice volunteer, and accompanying other volunteers and professionals – and about the work we do at End of Life Choices California (EOLCCA).

“Volunteers are the lifeblood of assisted dying,” Hannig says. “They provide firstline support for families and patients, and it’s hard to overestimate the role they play. In my research, I witnessed how much families and their loved ones leaned on volunteers for their technical expertise but also – and equally importantly – for their human touch and care. In a time of great vulnerability and uncertainty, volunteers help patients navigate the ins and outs of qualifying for the law and accompanying them each step of the way afterward. The emotional labor volunteers put into their work is nothing short of admirable. I have profound respect for their work.”

Hannig, an associate professor of anthropology at Brandeis University, invested five years of study and hands-on involvement in writing The Day I Die. Along the way she accumulated a wealth of stories – poignant, humorous, heart-tugging, enlightening – that she shares in the book.

The Day I Die ,by Anita Hannig

A book to give to those you love

Looking ahead, Hannig says she wants to be optimistic about the future of the law, “but in the current political (or perhaps judicial) climate I am not sure such optimism is warranted. In the long term, however, I do think that we as a society will gradually move into a direction of granting more rights and freedoms to the dying. My hope is that assisted dying will eventually become legal in all fifty states.”

For now, Hannig says “there are still some misunderstandings about all the different steps someone needs to complete to qualify for assisted dying. Most people think it’s more straightforward than it actually is. Or they wait too long to start the process. Many are still under the impression that there’s a “magic pill,” when in reality the protocol of the medications is quite nuanced and complex. My book talks about the fascinating pharmacology of dying in more detail.”

The Day I Die, in fact, talks about the fascinating work of assisted dying in all its important, often difficult, always rewarding details. It’s a book to read, to keep and to give to those you love. 

++++++++

A lifelong newspaper and magazine writer, EOLCCA Board Member Fran Moreland Johns has published fiction, nonfiction, and several books. Her focus on end-of-life issues includes many volunteer years, numerous articles and one book, Dying Unafraid. She holds a BA in Art from Randolph-Macon Woman’s College, and currently blogs at Medium.com and franjohns.net. Her short story collection, Marshallville Stories, was released in April 2022.

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.
Please find comprehensive information on our user-friendly website at www.endoflifechoicesca.org.
To support our work, please visit www.endoflifechoicesca.org/ways-to-help/.  Thank you.

Talking with Your Doctor about Your End-of-Life Wishes

When we plan the least

When expectant parents are planning for their newborns, it’s commonplace to seek out trusted medical offices that are aligned with their needs and values. Similarly, it’s a common practice to seek out multiple doctors’ advice when we get injured, or receive a serious medical prognosis. We reach out to family members and friends for their input. Our goal is to feel like we’re in good hands – trusting our doctors with our well-being. This is an understood and common practice that is repeated throughout our lives. However, there is one time when this practice is too often abandoned.  

doctor consult

It’s the time when we approach the end of our lives.

Planning for the end of life is unique to any other human life experience. Raising the topic with family members or friends is not easy.  Talking with our doctors about our end of life is also difficult and not commonplace. Even when confronted with a terminal condition, the sensitivity around death causes many doctors to be reluctant about initiating such discussions and to instead rely on their patients to raise the topic.

So we need to raise the topic of our end-of-life wishes and start the discussions early. Like other times in life, it’s not only our prerogative to prioritize having healthcare providers who are aligned with our needs and values, but it’s also in our utmost interest to do so.  

There are many paths

You have a range of paths to consider when approaching the end of life. We describe several end-of-life options on our website. The available paths we discuss include stopping unwanted medical treatment, receiving care and treatment specific to the dying process (such as with hospice and palliative care), voluntarily stopping eating and drinking, and other options for those who qualify, including the California End of Life Option Act. Guidance for how to discuss these options with your doctor is included on our website here

Another great resource for how to talk about end-of-life options is provided by the organization called The Conversation Project (part of the Institute for Healthcare Improvement). They provide step-by-step guides for how to have end-of-life conversations. One of their guides is focused on talking with healthcare providers; you can find it here

The guide provides practical suggestions for raising the conversation with your doctor.  One suggested statement is: “I want to talk about my goals for care and living with my serious illness.”  Another suggestion shows how a conversation might begin along these lines: ”My nephew recently died in the hospital after weeks of aggressive care. That’s what he wanted, but I don’t want that. I think I might prefer to die at home. How can we make a plan for that when the time comes?”

Every one of us will have our own unique end-of-life experience. Initiating discussions to influence our dying process will lead to conversations resulting in greater clarity and enabling a death with a sense of peace. 

+++++++++++++++++++++++++++++++++++++++++++

Becky Oliver is a volunteer with EOLCCA.  Her professional life has been spent as part of Silicon Valley’s tech industry.  Outside of work, her personal passions include contributing to end-of-life causes, with a specific interest in the nature of care for the aging and those nearing end of life.  

Comfort at Life’s End

When is being comfortable and pain-free not a good idea? Most of us would say never. As we humans approach life’s end, though, that question can get trickier. Or at least more complex.

 

A recent court case stirred renewed discussion of end-of-life care, specifically comfort care and pain control.

Not Guilty

Dr. William Husel, a physician with Columbus, Ohio-based Mount Carmel Health System, was accused of killing 14 patients between 2014 and 2018 by administering excessive doses of fentanyl, a powerful opioid which has become a common, and very dangerous, street drug. Prosecutors argued that he had committed murder; the defense argued that he was providing comfort and the patients – all were in intensive care units – died of their underlying disease. Dr. Husel was found not guilty on all counts in April, 2022. 

 

Nurses defend Dr. William Husel (center) during his trial.

Nurses defend Dr. William Husel (center) during his trial.

Controversy

The controversy spread throughout the Mount Carmel Health System, eventually leading to the resignation of the chief executive and the firing of more than 20 employees. Dr. Husel, though acquitted of all charges, later voluntarily surrendered his medical license. But renewed discussion of end-of-life care can only be seen as a plus. All of us will face life’s end; not all of us will have given thought to what we want that end to look like. Or what choices, including pain management, we might make.

Comfort Care

“It sometimes happens that families and even caregivers are not familiar with comfort care,” says EOLCCA Board Vice President Robert V. Brody MD. This can include end-of-life care, “where the direction switches from curing disease to keeping the patient comfortable (and) can be misinterpreted as hastening death when in fact the medical literature says that keeping people at peace actually prolongs their life.” A primary care, hospice and palliative care, and pain management physician, Dr. Brody is Clinical Professor of Medicine and Family & Community Medicine at the University of CA San Francisco. He is also a leading spokesman on matters of medical ethics in the U.S. and abroad. “Dying people often need high doses of opioids to manage pain,” he observes. “This is done in an entirely beneficent way, and in no way is it meant to cause harm. Those not directly involved may misinterpret these efforts.”

It’s Complicated

As the currently popular meme goes, “It’s complicated.” This was shown in the Husel/Mount Carmel case, and countless other instances since the meme appeared years ago. While opioids are highly addictive, and one of the leading causes of death among Americans under 55, they are widely used in treating dying patients. Most of us would welcome them, if appropriate, as we are dying.

Comfort is a happy state at any age.

++++++++++++++++++++++++++++++++++++++++++++++++++++

A lifelong newspaper and magazine writer, EOLCCA Board Member Fran Moreland Johns has published fiction, nonfiction, and several books. Her focus on end-of-life issues includes many volunteer years, numerous articles and one book, Dying Unafraid. She holds a BA in Art from Randolph-Macon Woman’s College, and currently blogs at Medium.com and franjohns.net. Her short story collection, Marshallville Storieswas released in April 2022.

Apoyo y Ayuda al Final / Support and Help at the End

abuelita

Esta nota bilingüe fue publicada previamente en La Voz y en Impulso News. Si usted desea apoyar nuestro alcance a la comunidad Latinx, escriba a la Doctora Marisol a doctoramarisolmunoz@gmail.com.

This bilingual piece first appeared in La Voz and Impulso News. If you would like to support our outreach to the Latinx community, please contact Doctora Marisol at doctoramarisolmunoz@gmail.com.

Apoyo y Ayuda al Final

By Marisol Muñoz-Kiehne PhD

Por el pasillo
hacia el gran misterio
desfilaremos.

Del desfile hacia la muerte nadie se escapa, hayamos o no participado en vida en desfiles de festival, boda o graduación. Si bien para éste no hay ensayos, estudios, ni celebración, a todos nos sirve la preparación.

Al Final de la Vida

Lentamente o de repente,
tarde o temprano se detiene el corazón.
Preparémonos con conocimiento, compañía,
comprensión y compasión.

Primero, las malas noticias. En muchas culturas hay mitos y tabús sobre la muerte, complicando el camino hacia el inevitable destino, resultando en que evitemos esta conversación. Lamentablemente, al final muchos sufren dolorosamente por falta de conocimiento y de comunicación.

Ahora, las buenas noticias. Profesionales de la salud, líderes religiosos, personalidades públicas y seres queridos se han dado a la tarea de romper con los mitos y tabús, ofreciendo fiable información y orientación. Y este asunto está llamando la atención de los medios de difusión. ¿Vio los programas Aquí y Ahora y Al Punto presentados en marzo por Univisión? ¿Escuchó la entrevista con la admirada activista Dolores Huerta cuando habló en La Bomba Mañanera?

Existen organizaciones abogando en las legislaturas, tribunales y sistemas de salud para mejorar la atención médica y empoderar a todos para trazar el viaje al final de la vida. En el camino hacia la muerte tenemos aliados y abogados. ¡Y tenemos más de una opción!

Opciones

Quizás hay tantas maneras
de encarar la muerte y el morir
como hay maneras
de encarar la vida y el vivir.

Sabemos que hay versiones diversas de cómo vivir una vida buena y plena. ¿Sabía usted que contamos con varias opciones para morir una muerte digna y serena? Entre ellas se encuentran la muerte natural, el cese de tratamientos médicos, el hospicio, los cuidados paliativos, la sedación paliativa, la suspensión voluntaria de la comida y la bebida, y la ayuda médica para morir.  

En California

Todos quienes vivimos en California tenemos derecho a guías gratuitas a lo largo del camino, gracias a la organización Opciones para el Final de la Vida en California (EOLCCA, por sus siglas en inglés).  Su misión es “brindar información y apoyo para navegar con éxito las opciones legales para el final de la vida”. EOLCCA proporciona servicios confidenciales, disponibles en español, sin importar los ingresos o el estatus migratorio. Tienen voluntarios que ofrecen apoyo e información general y específica a quienes planifican y toman decisiones al final de la vida, y a sus seres queridos. Educan sobre las opciones disponibles, de manera que las decisiones reflejen los deseos, valores, preferencias y prioridades de cada cual. La página web de EOLCCA, https://endoflifechoicesca.org/, tiene traducción al español y contiene innumerables recursos útiles, incluyendo formularios y documentos para ser descargados y personalizados en cualquier momento.

Estoy tan bien impresionada con esta organización y sus voluntarios que acepté formar parte de su comité de consultores. Todos ocupamos sus ofrecimientos, para nosotros mismos y para nuestros familiares y amigos. ¡Qué alivio saber que contamos con guías de confianza al final del camino!

Sobre la Autora

Marisol Muñoz-Kiehne PhD (‘Doctora Marisol’) es integrante del Comité Asesor de EOLCCA.  Ella es una psicóloga clínica comunitaria quien aporta al bienestar humano mediante la enseñanza, la escritura, y los medios de difusión. Trabajó en salud mental comunitaria por más de 30 años. Ha brindado información e inspiración a través de la radio/podcasts (‘Nuestros Niños’, ‘Cuerpo Corazón Comunidad’) y programas de TV/videos por más de 15 años. Ha enseñado en varias universidades, habla en conferencias y eventos comunitarios, y escribe para publicaciones impresas y digitales.

Support and Help at the End

By Marisol Muñoz-Kiehne PhD

Down the long hallway
towards the great mystery
we will all parade.

No one escapes proceeding toward death, whether or not we participated in graduation, wedding, or festival processions. While there may not be rehearsals, dry runs, or celebrations for our death procession, we will all benefit from preparation.

At the End of Life

Slowly or suddenly,
sooner or later everyone dies.
May we seek knowledgeable guidance
and kind guides.

First, the bad news. In many cultures, there are myths and taboos about death, which complicate the path to the inevitable destination, and cause us to avoid this conversation. Unfortunately, at the end, many suffer painfully due to a lack of knowledge and clear communication.

Now, the good news. Health professionals, religious leaders, public figures, and loved ones have taken on the task of busting myths and taboos, offering guidance and reliable information. And this subject is attracting media attention. Did you watch the Aquí y Ahora and Al Punto programs presented in March on Univision TV? Did you listen to the interview with admired activist Dolores Huerta when she spoke from the heart on La Bomba Mañanera?

Some organizations advocate in legislatures, courts, and health systems to improve health care and empower everyone to chart their end-of-life journeys. We have allies and advocates on the road to death. And we have more than one option!

Options

Perhaps there are as many ways
of facing death and dying
as there are ways
of facing life and living.

We know that there are various versions of how to live a good and full life. Did you know that we have several options for dying with dignity and serenity? These include natural death, stopping unwanted medical treatment, hospice, palliative care, palliative sedation, voluntarily stopping eating and drinking, and medical aid in dying.

In California

Everyone who lives in California has the right to free guidance along the way, thanks to an organization called End of Life Choices California (EOLCCA). Its mission is to “provide Californians the information and support to successfully navigate their legal end-of-life options.” EOLCCA delivers confidential services, available in Spanish, regardless of income or immigration status. Their volunteers offer individuals and their loved ones support and general and specific information for end- of-life planning and decision-making. They educate about the available options, so that decisions reflect each person’s wishes, values, preferences, and priorities. EOLCCA’s website, has a Spanish translation and contains countless resources, including useful forms and documents that can be downloaded and personalized at any time.

I am so impressed with this organization and its volunteers that I agreed to be part of their Advisory Committee. We all need these offerings, for ourselves and for our family and friends. What a relief to know that we have trustworthy guides for the end!

About the Author

Marisol Muñoz-Kiehne PhD (‘Doctora Marisol’) is a member of the EOLCCA Advisory Committee. She is a clinical community psychologist and contributes to human well-being through teaching, writing, and media. She worked in community mental health for over 30 years and has provided information and inspiration through radio/podcasts (‘Nuestros Niños’, ‘Cuerpo Corazón Comunidad’) and TV/video programs for  over 15 years. She has taught at various universities, speaks at conferences and community events, and writes for print and digital outlets.

 

 

Para más información o apoyo de los voluntarios de EOLCCA, llame al (760) 636-8009. Se habla español.

Your Voice – Lessening the impact of dementia

The joy of growing up for me was to be on my own, make my own way, and be myself. Of course, accomplishing these goals is more than the compilation of many birthdays, and is often not easy. Yet multiple decades later, I now hold dear many values and viewpoints which make me–me! And the same is true for many of us, across all walks of human life. The opportunity to represent and guide your own life is an innate part of being yourself. 

When Dementia Takes Hold

This treasured aspect of humanity is impacted when dementia develops and takes hold.  Medical professionals often talk about Alzheimer’s disease (the most common form of dementia) being one of the most feared diseases because of this impact to “self”–self-representation and self-determination.  

I witnessed this first-hand, watching my grandmother deteriorate from Alzheimer’s disease. Like too many others, the disease slowly but surely removed the ability for my grandmother to represent herself. She could no longer talk and had no capacity to express herself–her wishes, views, or needs. My grandmother passed away after years of 24×7 care in different nursing homes which kept her alive, but sadly were not informed to customize their care to her wishes and needs.

Mother with dementia and daughter
Representing Ourselves Now

While we do not yet have a way to fully avoid the future possibility of debilitating dementia, we do have the opportunity to communicate our own wishes, views, and needs. We can represent ourselves now. The following resources are ways to communicate to both loved ones and health care providers: 

A health care directive for dementia

Developed by Dr. Barak Gaster via the dementia-directive.org and available for download from our site, this directive describes three levels or stages of dementia impact. For each stage, you may select from a set of three goals to communicate the type of care you would want to receive.    

A letter added as an amendment to a general health care directive

Created by author Katy Butler, and shared via the Conversation Project organization, this letter can be used as-is, or as a template and modified per your wishes. It provides a thorough listing of specific guidance for various care and treatment options when one can no longer represent oneself.

A dementia directive or amendment serves to clearly inform loved ones and health care teams.  And though currently neither is legally binding, those who are in a position to care for you will be enabled and encouraged to honor you by aligning future care to your views and wishes. Your own voice will be communicated and clear. 

To read more about this topic, please visit our website.

++++++++++++++++++++++++++++++++++++++++++++++++++++

Becky Oliver is a volunteer with EOLCCA.  Her professional life has been spent as part of Silicon Valley’s tech industry.  Outside of work, her personal passions include contributing to end-of-life causes, with a specific interest in the nature of care for the aging and those nearing end of life.  

 

In Love, A Memoir of Love and Loss

I often receive requests to read and review books. As a result, I have quite a pile of books on my nightstand. And as an avid reader, this is a lovely problem to have. Amy Bloom’s book, In Love, came to me through a different channel. One of our esteemed board members, Fran Johns, recently wrote a commentary of the book that was published in March 2022. I read it, it piqued my interest, and I got the book.

Interestingly, I had just finished reading Still Alice, by Lisa Genova, and then watched the movie again. It had been a few years since I’d seen it and wanted to watch it after reading the book. An excellent story. So my brain was primed for Alzheimer’s disease (not literally!) when In Love landed on my nightstand.

 

Few Available Choices

I have been interested in, concerned about, and curious about Alzheimer’s disease for decades.  When I was in private family practice many years ago, I walked that path with quite a few patients and no matter what anyone tried, we really could only provide comfort care. Still Alice and In Love both depict the almost unbelievable devastation of Alzheimer’s disease. Not only to the patient, but to the family as well.

I thought Amy Bloom did a heart-wrenching job of sharing the experience of watching her beloved start to show early signs of the disease, becoming aware of the probability of the disease even before diagnosis, and finally accepting a clear understanding of what was happening and had been happening for years. She and her husband, Brian, were very brave as they confronted the issues and choices available to them based on their preferences and values.

Threading the Needle

I loved how personal the book is. I ached for them as they made plans, and then more plans, for Brian to find his peaceful death. I felt sad that they were unable to find that peaceful death in their own home and had to go to Switzerland to find medical aid in dying for early Alzheimer’s disease. As someone who has worked in the field of end-of-life care for over ten years now, it was still shocking to me to read her words about how poorly the US has constructed any kind of system for compassionate end-of-life choice. Yes, some states have medical aid in dying laws that allow physicians to legally prescribe medication to end a life. And people in those states are grateful for the choice.

But, as Amy Bloom said, accessing those laws is like ‘threading the needle”. Only a very specific cohort of patients are able to meet the requirements to access the law. A person must a) be mentally capable and understand the ramifications of the choice, b) be an adult and have a terminal diagnosis (life expectancy of less than six months) made by two physicians, and c) be able to self-administer the drugs.

 

In Love, A Memoir of Love and Loss, book cover
Walking Through This Process

Of course, many people, particularly those with terminal cancer, are able to access the law under these parameters with relative ease. They still, however, need to find a doctor who will prescribe the medication. Many people don’t, or can’t, find a physician to prescribe because they live in a rural area, or their own doctor either doesn’t know how to prescribe or doesn’t want to. The law allows for that. I am grateful to be part of EOLCCA as we continue to help people, at no charge, to walk through this process and overcome barriers they might run into. You can read about our services here.

For those who are not eligible for medical aid-in-dying and don’t wish to go to Switzerland, there are other end-of-life choices. We outline them here on our website and discuss these with clients all the time. One of those choices that people find most interesting is Voluntary Stopping Eating & Drinking (VSED), though it  is not everyone’s cup of tea, as Amy Bloom discussed. This is totally understandable. However, we have supported many people through VSED and with adequate support and understanding, it is often a very approachable way of embracing nature’s authentic way of dying. It is seen in many cultures and in the animal kingdom as well. For some comprehensive resources on VSED, click here.

I applaud Amy Bloom’s courage in supporting her husband’s wishes to leave this world in his own way, in his own time. What a beautiful gift she gave him with that support. And what a beautiful gift to us all with this lovely book. Thank you.

End of Life Choices California is a 501(c)(3) nonprofit organization that provides its services of support and information at no charge to our clients. If you would like to support our work, you can do so easily by clicking here. We are grateful for all gifts, large and small.

Please keep an eye out for next month’s blog post by one of our volunteers about dementia and the Dementia Directive.

Why I Do This Work

I’ll call her Hazel – because she didn’t give me permission to tell her story. If I had asked, though, I’m satisfied that she would have happily agreed.

Hazel was 78, and dying of lung cancer. Though hospice had been able to keep her largely pain-free, she was terrified of the possible end-stage symptoms of her disease and had chosen to use the California End of Life Option Act to control her dying. It was early afternoon on the day she had chosen to die. Hazel had said her goodbyes to family – mostly nieces and nephews in other states – and her two best friends had come to be with her at the retirement condo where she had lived for more than a decade.

 

Everything Will Be All Right

In the morning I had come by to help arrange things as she wanted. We put a CD player in a nearby corner, with a selection of her favorite classical music. We opened the window to a cool San Francisco breeze, and propped her up on big pillows. She wanted to go over some documents with the two friends one more time, so I left the anti-nausea and other medications with them and went to get some lunch. 

Around 3:00 I returned, as planned. I asked Joan, another volunteer who is a retired nurse, to go with me because she’d met Hazel and the two had become friends. Hazel wanted to die in the late afternoon. 


This Is Why

When Joan and I walked in, the two friends were seated at the kitchen table, patiently preparing the medication. “She’s already pretty groggy,” they said, “but she wants to see you!” So we went on down the hallway to Hazel’s bedroom.

She was still propped up – leaning a little but comfortably upright. Music was playing, the breeze was ruffling the curtains and drifting over her bed. Hazel looked up and flashed a beatific smile at Joan and me as we entered the room.

“Oh, wonderful!” she said. “You’re here. Now everything will be all right.”

And this is why I serve, with joy and gratitude, as an EOLCCA volunteer. 

A lifelong newspaper and magazine writer, EOLCCA Board Member Fran Moreland Johns has published fiction, nonfiction, and several books. Her focus on end-of-life issues includes many volunteer years, numerous articles and one book, Dying Unafraid. She holds a BA in Art from Randolph-Macon Woman’s College, and currently blogs at Medium.com and franjohns.net. Her short story collection, Marshallville Stories, was released in April.