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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.

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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.

Looking Forward in 2022

This month, End of Life Choices California (EOLCCA) celebrates the completion of three years of service to the people of California.

Dear Friends and Supporters,

I am proud to share with you our accomplishments in 2021 and our vision for 2022.

EOLCCA volunteers worked diligently throughout 2021 to provide Californians the information and support needed to successfully navigate their legal end-of-life options. At the same time, we have been busy developing plans to expand our programs and services in 2022.

Today I am asking for your help.

Belief in our mission

Many of you have already offered your support in word or deed, and we thank you with gratitude for that support.

Because of your belief in our mission, we have been able to keep our commitment to provide educational presentations as well as services to clients and others at no charge, ensuring accessibility to all.

California poppies

In 2021, our Client Volunteer Program:

      • Onboarded and mentored 26 volunteers throughout the state who provide extensive phone support and client counseling, as well as bedside attendance for aid-in-dying;
      • Responded to and counseled 676 individuals and their families who reached out to EOLCCA for support, information and guidance;
      • Were present bedside (and even Facetime) for 8 clients who died peacefully with the support of our experienced volunteers;
      • Provided 24 presentations to community-based hospices and retirement communities about end-of-life issues and medical aid in dying;
      • Educated 12 physicians/pharmacies new to medical aid in dying who reached out to EOLCCA for our expertise.  These medical professionals are now prepared and available to provide medical aid-in-dying services to the terminally ill.
      • Tying this together is our user-friendly website, packed with information, which garnered more than 17,000 visitors in 2021 and over 1,000 followers receive our communications across various social media channels.

Expanding Our Impact

We are proud of our volunteers and of our accomplishments.

In 2022, we are committed to expanding our impact throughout the state. The majority of terminally-ill Californians still do not know about the End of Life Option Act nor about what end-of-life options are available.

This year EOLCCA will work to reach out to historically underserved communities, specifically communities of color and in rural areas. To this end we are actively seeking and recruiting multicultural volunteers to help provide end-of-life information and services to ALL Californians. Our goal this year is to expand our volunteer base while also providing educational programs in more underserved communities.

We need your support to make our work possible!  Please click here to make a contribution now.  Your gift at any level will help us expand our reach into communities where the need is great. Thank you for your continued commitment to our shared vision of a dignified death for all.

With gratitude,

Judy Neall Epstein
President and Founding Director
End of Life Choices California

A Volunteer’s Story

Our client, and my friend, “Anne” died Friday, December 10. She was the mother of my best friend and the most fun-loving, bubbly, vivacious, down-to-earth woman I have ever known. I called her my “other mother.” At a cool 95, she was having a great time. She was my hero.

 

But then came the cancer and her life changed. Now everyday was a painful struggle. Her body just didn’t seem to work right anymore. After she returned home from a horrific trip to the ER, followed by a hospital stay and rehab, she said, “I’m not going back there,” and asked me about that “aid in dying thing”.

 

Even with hospice support, her daily life soon became a grind of pain and difficulty and loss of things that brought her pleasure. After going through the process with her medical providers to request aid in dying medication, and once she received the prescription, she seemed to relax and rally and had a pretty good week. But ultimately, the pain and misery became unbearable and, on that Friday, with her daughter, her boyfriend and me present, she drank her final medication and peacefully drifted off to a deep sleep with hugs all around. I’m grateful to EOLCCA for providing the training that made it possible for me to support my dying friend’s wishes.

 

— C.A.

Dear Friends and Supporters,

As the new year approaches, we thank you for your generous support, your insights, and your commitment to our work throughout 2021. You have helped EOLCCA grow in a sustainable and incremental way.  We are truly grateful to be able to meet the needs of Californians, such as Anne whose story is shared above, seeking answers or support with their end-of-life options.  We look forward to continuing this vital work in 2022.

The New Law

On January 1, 2022 — just a few days away — California Senate Bill 380 which became law this fall, will go into effect!

We welcome all of SB 380’s excellent improvements!  Through this blog and our website, we will keep you apprised as the law becomes operational and we learn more about how providers, healthcare systems and hospices address required changes in the new year.

Here’s a snapshot:

  • The new law reduces the waiting period between the two required oral requests from 15 days to 48 hours.
  • Healthcare systems and hospices will now have to post their aid-in-dying policies on their websites.
  • The Final Attestation form will be completely eliminated.
  • If a terminally ill patient requests medical aid in dying and his or her physician does not wish to participate, the physician will be required to tell the patient he or she will not participate. AND the physician must document the request in the patient’s medical record and transfer the patient’s medical records upon request.
  • The new law clarifies that medical aid in dying medication can be taken within a healthcare facility.

Grateful

We continue to be honored to help people in circumstances, such as Anne’s, to navigate the process through the end of their lives and hopefully find their way to a peaceful death.

We are grateful to be able to provide these services at no charge to our clients.  It is because of the big-heartedness of you, our supporters that we can continue to do so. Thank you. If you wish to make a year-end gift to further our work, please click here for our donation page and accept our sincere appreciation.

Happy New Year to you all!  And best wishes for a more peaceful, healthy 2022.

Sincerely,
The EOLCCA Team

Major Improvements to the End of Life Option Act

EOLCCA is thrilled to share the long-awaited news that yesterday, October 5, Governor Gavin Newsom signed Senate Bill 380.  This new law makes some badly needed adjustments to the existing End of Life Option Act in California, which was signed into law exactly 6 years ago on that very date by then Governor Jerry Brown.

These new provisions will become effective on January 1, 2022. Here is what will be different for anyone seeking Medical Aid in Dying in California in less than three months from now.

  • The new bill reduces the onerous 15-day waiting period between the required two oral requests, to 48 hours.  This is a big change and will help many people access the law who couldn’t previously.
  • Healthcare systems and hospices will now have to post their aid-in-dying policies on their websites. This will be extremely helpful in guiding people as to where they choose to receive their healthcare, especially if they are very sick or terminally ill and wish to request medical aid in dying.
  • The final attestation form will be completely eliminated.  This was a document that the patient was expected to fill out and sign within 48 hours prior to taking aid-in-dying medication.
  • If a terminally ill patient requests medical aid in dying and their physician does not wish to participate, the physician will be required to tell the patient they will not support them.  AND, the physician must document the request in the patient’s medical record and transfer the patient’s medical records upon request.
  • The amendment also clarifies that medical aid in dying medication can be taken within a healthcare facility.

We applaud Senator Susan Eggman for her dedicated leadership on this important issue and all California lawmakers who voted for this new measure, as well as Governor Newsom for signing this amendment into law.

Making a Good Law Better


We are happy to share the following op-ed submission written by Board member Fran Johns who recently sent it to the San Francisco Chronicle.  It has yet to be published, but it is well worth sharing with our readers now.  EOLCCA is very supportive of these changes in the current law and applaud our California lawmakers for spearheading this effort.

Senator Eggman’s Amendment

The California Legislature is facing a rare opportunity: making a very good law better. Senator Susan Eggman’s SB380 amendment to the California End of Life Option Act will do precisely that. Among other provisions, the amendment would reduce the 15-day waiting period to 48 hours.  This waiting period, along with the requirement for a second “attestation” document, has turned out to be one of the flaws of the End of Life Option Act. Because many people put off invoking the law until their final weeks, these provisions became a cruel reality – lives ended in agony before relief could be secured.

CA State Capitol

 

Those of us who have worked with terminally ill individuals, particularly those wanting to explore all options available to Californians, know the End of Life Option Act to have been a blessing ever since it became effective in June of 2016. This new amendment will remove its flaws, giving some flexibility to dying patients and their physicians, and making the act more effective. As an octogenarian who doesn’t handle pain and suffering well and who is grateful for the California law, I am particularly anxious for that law to be as effective as possible.     

Opt Out

The End of Life Option Act (EOLOA) rightly allows for physicians to opt out if they have personal or religious convictions that make them unwilling to participate in medical aid in dying (MAID.) What has become clear, however, is that much of the law is dangerously murky. Healthcare facilities often deliberately obscure the fact that they will not allow participation in EOLA, and patients often discover, too late, that their physicians will not help them. When one is near death, it is not a good time to have to start looking for a new physician or healthcare facility in order to have one’s wishes honored. This new amendment will correct these flaws by requiring healthcare facilities to post their MAID policies on their websites and prohibit them from withholding truthful and accurate information from their patients.

If recent years have taught us anything it is the critical importance of truth and transparency. Truth and transparency are even more important to a dying person, along with autonomy, personal choice and the relief of unnecessary suffering. SB380 covers them all.

Co-authored by Democratic Senators Jim Cooper and Jim Wood, SB380 has the sponsorship of Democrats Cecilia Aguiar-Curry, Rob Bonta, Jim Frazier, Cristina Garcia and Luz Rivas; and has been endorsed by Death with Dignity National Center, Compassion and Choices and End of Life Choices California. It should be swiftly passed.

For more information or to get involved in the work to support this bill, go to Death With Dignity National Center and Compassion & Choices.

 

Advance Directive: Part 2

For our fourth week in April honoring National Healthcare Decisions Day (April 16), we will complete this series by discussing two additional topics that can be added to an Advance Directive as addendums.  Both are important and worth discussing.  So, let’s get started.

POLST

POLST stands for Physician Orders for Life-Sustaining Treatment. In some states it is called a MOLST (Medical Orders….).  In California it is a POLST.  This is a document that is signed by you and your physician.  Most physicians will not be interested in signing this form with you until you are seriously ill enough that you might not be able to make medical decisions for yourself.  Once completed, this form should be kept near the patient and be readily accessible to emergency medical personnel, assisted living facility staff and other caregivers. The form should follow a patient from home to emergency services, and to a hospital or other facility. 

Dr. and patient signing paperwork

 

This document/form is unusual in that it is almost always bright pink (but it does not have to be).  Here is a link to California’s POLST form.  The purpose of this bright color is so that the form can be easily found in the home (generally on the refrigerator or on the back of the front door) by emergency personnel or others who need to know right away how to care for you in the event of an emergency. 

Dementia Directive

Dementia Directive is a communication tool. It provides a way to share your views with loved ones, to let them know what you would want in case they have to make medical decisions on your behalf.  Families often face making difficult decisions about their loved ones’ care. This directive can help them feel more sure that the decisions they are making are closer to what you, their loved one, would have wanted.

This directive is not yet considered a legal document.  It is purely an opportunity for you to outline what your preferences are should you become unable to make decisions for yourself due to dementia or other brain-related disease.

 

 

latino couple reviewing AD document

Many of us have clear ideas about the kind of medical care we would want if we developed advanced dementia. This directive can lessen the chances that you might get more medical care – or less medical care – than you would have wanted if you develop dementia.

 

We have more information on this topic here on our website.  There also are links to other organizations who have developed excellent Dementia Directive forms and are well worth perusing.

End of Life Choices California has trained, able and willing volunteers who are happy to walk through these forms with you, how they work, and how they might fit in your situation.  A simple phone call (760-636-8009) can put you in touch with one of these wonderful people.  

THANK YOU if you have taken the time to read our weekly blog posts about Advance Care Planning this month.  We did it because we think this is such an important part of planning ahead, and ultimately to have the end of our lives be exactly how we would want them to be.  For most people, the primary wish is for a peaceful, dignified ending.  These Advance Directive forms and addendums are a strong beginning to that process. 

Also, please know that we are completely volunteer-run and do not receive any funds from state or government agencies.  We rely on the kindness, compassion and generosity of our reading public and those families we can help when their terminally-ill loved one is trying to achieve a peaceful death.  Please open your hearts and send us a donation, no matter how small or large.  It all helps tremendously.  

Advance Directive: Part 1

Now that you have hopefully talked with your loved ones about getting an Advance Directive (AD) done, or are thinking about updating it, here is a little more information.  By the way, it is recommended that people review their Advance Directive every five years or so, or every time there is a change in health status, or if the assigned Medical Power of Attorney is no longer available.  

THE LIVING WILL

This part of the Advance Directive allows you to specify which kinds of treatment and care you desire if you are unable to speak for yourself.

A living will allows you to express your wishes about any aspect of your health care, including decisions regarding life-sustaining treatments.  Remember, it can include treatments and procedures you do or do not want.  Statements regarding organ and tissue donation may also be included. The instructions provided in this portion of the form serve as evidence of the patient’s wishes.

 

End of Life Choices California - Advance Directives

 

Our friends at Compassion & Choices have graciously provided us with links to two worksheets that might help clarify some of these items:

 

A Values Worksheet

My Particular Wishes

THE MEDICAL DURABLE POWER OF ATTORNEY

This document provides the designation of someone who will be able to make decisions regarding your health care if you are unable to speak for yourself due to illness or injury. This designated person may also be called a health care agent, proxy, surrogate or representative. This person should be informed and agree that you are naming him or her in the AD. It must be a person you know will truly go to bat for you and express exactly what your wishes are when you are not able.

two women discussing advance planning.

It is important to think about who this person will be; as an example, an adult child might not be the best person to appoint if they are going to be too emotionally involved to honor your wishes. They might instead ask for all life-saving procedures when that might not have been your wish.

Make sure the person you choose can stand up under the pressure of timely decision-making and still honor YOUR wishes.

If the time comes for a decision to be made, the agent can participate in relevant discussions, weighing the pros and cons of treatment decisions based on your previously expressed wishes.  The agent can participate even if decision-making capacity is only temporarily affected. The degree of authority (how much or how little) you want this agent to have can be defined in the document. Alternate agents can also be appointed in case the primary agent is unwilling or unable to act. Additionally, you may name individuals who specifically are NOT to participate in decision-making.

If an agent is not appointed, the law in most states provides for other decision-makers by default, usually beginning with the spouse and adult children and ending with the patient’s physician.  Physicians tend to err on the side of prolonging life so their decisions may not be consistent with the patient’s desires. In some cases, if the patient does not have an AD, a court may be required to appoint a guardian.

Lastly, here is the link for California’s Advance Directive form which can be completed online.

Next week, in Part 2, we will cover the POLST (Physician Orders for Life Sustaining Treatment) and The Dementia Directive.