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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.

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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.

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.

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.

Diane Rehm’s new book: When My Time Comes

Editor’s note: We know that focusing on helping our families and supporting our communities in the effort to prevent the spread of the coronavirus is of the utmost importance.  During this time, we will continue to share with you, dear readers, our blogs and other updates about Medical Aid in Dying in California and throughout the country.  We hope that calling your attention to Diane Rehm’s book, reflecting as always her balanced and deeply thoughtful discussion, would help keep you grounded during this unprecedented series of world events.   

Support for Medical Aid in Dying (MAID) is growing as more and more states pass laws to allow those who are dying to choose to end their pain and suffering.  The passage of these laws has sparked debates and conversations across our nation because this topic, like our ongoing arguments about abortion rights or the death penalty, is met with intense controversy and opposition.

Diane Rehm, acclaimed NPR radio host, tackles the conflicts and challenges arising from this law  in her most recent book When My Time Comes: Conversations About Whether Those Who Are Dying Should Have the Right to Determine When Life Should End. In her usual even-toned and well-balanced style, Rehm takes a deep dive into the personal stories and opinions that come together to make this law so controversial.

Rehm investigates this subject with knowledge based on personal experience. She understood the value of a person having the right to die way back in 1955, when her own 49-year-old mother endured unimaginable pain and suffering, combined with endless medical procedures, only to prolong the agony and trauma of a death that she knew was inevitable.  In 2016, she watched her husband, John Rehm, suffer and eventually die without being able to receive the medicine he wanted to take to end his life on his own terms. He was ready to die, so he chose to Voluntarily Stop Eating and Drinking (VSED) and died 10 days later, while Rehm sat by his side and watched him suffer.

For this book, and a complimentary upcoming documentary of the same name, Rehm spent two years interviewing patients with terminal illnesses, their doctors, nurses, ethicists, family members and loved ones left behind.  What she discovered is that the patients she interviewed were grateful, empowered, and emphatic in their resolve to die on their own terms, but professors, doctors and experts in the field are divided about the use of Medical Aid in Dying.

Some opponents believe that it is unethical and unnecessary to end a person’s life through MAID. They point to modern medicine and our increased ability to manage pain and ease uncomfortable symptoms through palliative care.  They argue that it is not our role to “play God” and that there is the possibility for error based on a patient suffering from spiritual or emotional distress rather than physical pain. Religious issues, historic racial issues and possible medical malfeasance are all addressed as reasons for opposition to MAID. For many doctors like Dr. Roger Kliger, “There are two ethical goods going against each other. You’ve got the ethic of autonomy going against the ethic of maintaining life.”

Supporters of Medical Aid in Dying cite that it is our right to make the decision for ourselves about when we are ready to die from a terminal illness. What’s clear throughout the book is that people seeking MAID do not want to die, they want to end their suffering and to exercise their rights to live and die on their own terms. With successful access to MAID, people gain a sense of control and report a greater sense of well-being and relaxation knowing that they have this option available if and when they want to use it. As Dr. David Grube, National Medical Director of Compassion & Choices, stated in a lecture to medical students at George Washington University, “Death is not the enemy-we’re all going to die. The enemy is terminal suffering at the very, very end of life… we can’t always manage intolerable suffering. And who defines suffering? It’s the patient who defines suffering, it’s not the doctor.”

 What is a good death?

Throughout her book, Rehm asks both the people who support and those who oppose MAID how they would define “a good death”, and this is an area where we see all of humanity coming together in agreement. We all want to be together with family, to tell people we love them, to be comfortable and pain-free, to ask for forgiveness and to share memories, and to say goodbye. In this regard, we are united.

The message of this book is really an invitation. We need to have these hard conversations. We need to ask our loved ones, “What do you want when you are at the end of your life?”

As these conversations about aid in dying take place in homes as well as in state legislatures, it is Diane Rehm’s hope that more and more people in decision-making roles in our country will see clearly that each and every person has an individual right to determine when it may be the right time for them to die. She also hopes that those individuals will be able to take advantage of such laws that can offer relief, an end to pain and suffering, and a sense of peace for them and their loved ones.

In addition to being a thoughtful contributor to our blogs, Diane Button serves as a Client Advocate Volunteer for End of Life Choices California in the Bay area. She and other volunteers are also available to speak to community groups interested in learning more about the California End of Life Option Act, writing an Advance Health Directive, or finding ways to begin such conversations with their health care providers and loved ones.  Please go to our website to find more information or to request a speaker.

End of Life Choices California offers information and non-judgemental personal support to anyone seeking help managing end-of-life care planning or decision-making in California.  Please visit our website www.endoflifechoicesca.org for more information. To speak with one of our volunteers, please call 760-636-8009.  All our services are free of charge.

Please contribute now to support our work. Thank you!