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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.

Barriers to Medical Aid in Dying even when it is legal

A recent story about the firing of Dr. Barbara Morris, a courageous geriatric physician in Colorado who went to court to fight for the right of her patient to use the state’s medical aid-in-dying law, is yet another warning for those of us in California and other states who are working hard to lift the barriers to compassionate and timely access to medical aid in dying (MAID) for the terminally ill.

This latest incident, involving a physician who independently chose to prescribe medical aid-in-dying for her patient and as a result was fired from her job with a jointly run Catholic/Seventh-day Adventist hospital system opposed to MAID, is as unfortunate as what recently occurred in New Jersey where a single Orthodox Jewish physician had the power to temporarily stop the law from going into effect because of his personal faith-based beliefs.  

We have no wish to comment on religious preferences or practices, however, we believe that such barriers to health care do not belong in a democratic and compassionate society such as ours.  New Jersey Assemblyman John Burzichelli, one of the law’s sponsors, speaks directly to our concern when he says: “I have my beliefs, you have your beliefs, but don’t use the machinery of government to impose them on others.”    

Enough barriers are already built into the system.

The physical and emotional barriers most terminally ill individuals face in accessing medical-aid in-dying in California and other states that have adopted a law are already burdensome enough: family members opposed due to their own beliefs; physicians who have often been treating the patient for years and refuse to prescribe based on their own beliefs; hospices, social workers and health care providers opposed to MAID that won’t even inform a patient of their right to request the medication nor give the patient a referral to a health care provider who is willing to prescribe as stipulated in the law.  Moreover, the process to request MAID in California is lengthy and daunting, including a wait time of a minimum 15 days, which every individual, sick and debilitated as he/she is, must go through who wishes to ease their end-stage suffering with medical aid-in-dying. Oregon just wisely corrected this stipulation and those who are very near death can now access the law in a shorter period of time.

Are you a compassionate physician?

End of Life Choices California was founded on a belief system and mission: to enable those who face end of life situations to have access to ALL the information available and a support-system to make informed decisions about how they wish to die, including the option of medical aid-in-dying.  

We continue to search for more physicians throughout California to whom terminally-ill individuals can turn for compassionate care, understanding, and support of whatever end of life option they choose, including medical aid-in-dying if they qualify under the law.

If you are one of those compassionate physicians or a medical provider of any kind, we would love to know about you so that as we get calls and emails from people who need help accessing the California End of Life Option Act we can reach out to you and see if our client would be an appropriate referral.  In addition, if any of you, our readers, have had a positive experience with a doctor or hospice about end-of-life choice, and would like to share your story with us, we would be very grateful to hear from you. Ways to contact EOLCCA.  Thank you!

In the Middle of a Revolution on Death

The Revolution is upon us

The recent Washington Post article, “We’re in the middle of a revolution on death” is gently thought-provoking and describes a trend that we hope will become the reality for more Californians.  Specifically, those who are facing terminal illness and wish to spend their last days not in an induced coma, in agony tethered to life support in a hospital, or suffering excessive medical intervention and expecting a miracle. Instead, these patients are offered the option to die in their own home with access to medical aid-in-dying and surrounded by loved ones.  In California, the good news is that medical aid-in-dying became available to the terminally ill via the End of Life Option Act in June of 2016. However, the reality is that many of those who might choose to access this law have neither the information nor the support they would need to obtain the prescription when it could make the most difference.

“Don’t tell me what I have to do.”

As Dick Shannon, the subject of the new HBO documentary “Alternate Endings”, released by HBO August 14, 2019, plainly states:

“My observation about the way people die, at least in America, is they are not allowed the opportunity to be part of the process.  For my way of thinking, the part that bothers me immensely is not being allowed to be part of that process. It’s my death. Go with what you believe, but don’t tell me what I have to do.” 

Our Mission

That, in a nutshell, is the mission of End of Life Choices California: to bring more attention to these issues in our populous state. We aim to make sure that BOTH those seeking medical services and those providing medical services are working with the same information and understanding when it comes to these critical discussions about end of life decision-making.  Our goal is simply to help more Californians, in clear, honest and informed communication with their physician and family, decide for themselves how they will die with their dignity intact and leave a peaceful legacy for their loved ones.

I am looking forward to seeing this new documentary.  It looks like it will be just the kind of film we will want to include in our resource-rich website, endoflifechoicesca.org,  which is designed to assist anyone (patients, hospices, nurses, physicians, journalists) seeking information about California’s End of Life Option Act.  The site, also offers other end-of-life planning tools to help individuals take control over how they die, in the same way they have engaged in their life.

End of Life Choices California offers information and personal support to anyone seeking help facing end-of-life decisions through our state-wide volunteer program. You can read about our services here.