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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.

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

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.  

Honoring National Healthcare Decisions Day

Most of the work we do at End of Life Choices California involves talking with people about dying: addressing their fears, providing support with problem solving, helping them access the resources they need to plan for the kind of death they wish for.  Some people might find this kind of work challenging and even distasteful.  But we love it. 

We TALK about it!  So many people have said something to our volunteers along these lines:  “Thank you for your honest and frank conversations with me. No one has been willing to have them and I am so grateful and feel free from worry now.”

 

Talking to family about end of life choices

Another important aspect of our work is helping people do the necessary preparation in case of a medical emergency, or diagnosis of a serious or terminal illness.  This process is called Advance Care Planning.  We teach seminars on this and enjoy educating people on how to plan ahead.  

One thing people often don’t know or think about is this is important for EVERY PERSON OVER THE AGE OF 18.  All adults should have an Advance Directive and have shared it with their important people. 

A Gift to Family

Talking to family about end of life choices

Therefore, in honor of National Healthcare Decisions Day, on April 16, we are devoting the entire month of April to paying attention to these important matters.  Every week we will post a new blog on a different but related topic on Advance Care Planning.  If you read every one, at the end you will be an expert!  

Please join us in these important discussions.  

To find out more about Advance Care Planning on our website, go here.

To find out about volunteering with our organization, go here.

To make a donation to support our important work, go here.