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.  

Do You Have an Advance Directive?

Although conversations about Advance Care Planning may seem awkward at first, they often bring family members closer together. 

Talking about death/end of life is deeply personal. Sharing beliefs and desires with those closest to you produces a more intimate relationship.

It takes courage to have these conversations.

It demonstrates your love and deep caring for one another.

couple talking

Advance Care Planning is a process of conversations and directives for all adults that express your health care goals, values, and wishes in case a time arises when you are unable to speak for yourself due to injury or illness.

Here is one way to get The Conversation going:

Q:  Do you have an Advance Directive?

A:  Common responses to that question, with various levels of comfort: 

two men discussing advance planning
  1. A what?
  2. I should but…
  3. I think so?!
  4. Yes, but it needs to be updated.
  5. Yes, so glad!
  6. ……..Silence
    Which response is yours or that of your loved one?  If you would like to get busy creating your AD, get in touch with our volunteers at End of Life Choices California, and/or simply look on our information-rich website here. We will be glad to help you get going with this very important document.

Stefanie Elkins is a guest blogger and a Client Volunteer with End of Life Choices California.  She is also an Elder/End-of-Life Care Coach and Consultant.  Stefanie can be found at Be Present Care in the Los Angeles area.

Can We Talk?

courtesy of Bizarro Comics

They say there are only two things we absolutely have to do: Die and pay Taxes.  April 15 is traditionally Tax Day, and now the day after, April 16, has been designated National Healthcare Decisions Day, in an effort to get people to plan for their dying as well as they do for their taxes.

Elephant in the Room

Due to this pandemic year of hearing daily numbers of Covid deaths and constantly seeing scenes of people suffering and dying, we have a fresh awareness of death.  This heightened awareness is actually helping us talk about death and prompting many families to discuss what they want their dying to look like.  The “elephant in the room” (that thing that we are all thinking about, but not talking about), is actually being acknowledged much more now.  It remains to be seen if 2021 will turn out to be the year more Americans than ever will have embarked on advance care planning and completed their advance directives (ADs).

What is important to you?

If you are serious about telling your loved ones what you would want at the end of life, we at End of Life Choices California (EOLCCA) are here to help you get the conversation going (the most important part) or show you where to find the appropriate forms and what to do with them.  It’s what we do.

Ask yourself: What is most important to you?  What matters most to you?

We are here to help you share with your loved ones exactly what you would want if you were unable to speak for yourself.  Completing an AD is a “game changer” for you and your family; it is a gift, it is liberating.

Let’s bring that “elephant” out of the closet and shine a light on dying:  Let’s admit that someday we are going to die, hopefully not soon, but that we all eventually die.  Let’s get comfortable talking about how we would like to die; where we want to be, who we would like to be present.  Let’s have that conversation about death with our loved ones and write down what we would want in an AD.  The sooner we do this, the more likely it is that our wishes will be honored.

Our family and friends will be grateful to have had the opportunity to help us achieve our goals.

Having the conversation about end of life choices
Take these steps today!

Please go to our website where you will find an advance directive form to download and complete.

Sign it, have it witnessed, and give copies to your loved ones and your physician.

If you have any questions or would like help completing an AD, please email us at info@endoflifechoicesca.org and let us know how our volunteers can help you.

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.

 

What the World Needs Now

As End of Life Choices California completes its second year (first full year!) and we approach this coming new one, I am struck by what an immense undertaking beginning and developing EOLCCA has been. Claudia, Lynne and I have been running this non-profit organization as volunteers, and we continue to be successful in developing an amazing team of Client Advocate Volunteers who are trained and poised to help any Californian seeking information and/or support in their end of life wishes, at no charge.  It is surprising how many people continue to be unable to access the information they need within their own health care systems.  On the flip side, we are grateful for those systems that can and are willing to provide such information and support.

End of Life Choices California

It’s been a difficult year globally.  Everyone is feeling the effects of Covid-19 and the trickle down economic effect of the pandemic. Politics in the US, and elsewhere, has been tumultuous and painful to watch.  One could become overwhelmed and feel undermined by it all.  I think the feelings must be similar to someone who is facing a terminal illness.  A whole life can change in an instant with a terminal diagnosis and the ensuing challenges that come.

Volunteer powered organization

An Act of Love

I am full of gratitude and hope in the work that we do. I believe that being of service to others is what makes the difference in the world.  I googled “quotes about being in service” and there were so many good ones, I couldn’t pick a favorite.  But for me, being of service is an act of love. And I am full of gratitude for our clients who give us the opportunity to engage in these acts of love, to our volunteers who step up to meet the needs of our clients, and our amazing Board of Directors who are donating their time and energy to help us grow in a sustainable way.

 

What the World Needs Now

I awakened this morning with a song in my head and heart that I hadn’t heard in a long time.  I’m sharing it with you now as I think, even though it was recorded in 1966, it is still relevant today and portrays hope for the future. The song reflects my personal belief as to how we are going to overcome the woundedness and grief of this pandemic and of 2020 in general.  There are nuggets of truth and joy and peace and wisdom in the woundedness if we look deeply enough.

What the World Needs Now – Dionne Warwick

I envision a better year for us ahead in 2021. May you find those nuggets of wisdom and peace in your own life.  And, if you feel inspired to help an organization dedicated to being of service to the terminally ill and their families, we would be truly honored to accept your volunteer application or donation of any size.

With gratitude,

Judy

El Día de los Muertos

Dear Readers,

A few years ago, I happened to be visiting Mexico over October 31 – November 2.

As luck would have it, it was the annual event of el Día de los Muertos. I didn’t know much about it but it turned out to be one of the most interesting and amazing cultural, community events I have ever witnessed.

Dia de los Muertos Alter

I was in the small beach town of Sayulita, on the Pacific coast.  On the first day of the celebration, as dusk approached, everyone in the village came out to decorate their yards. Candles were lit, and altars set up with photographs, drawings, and piles of food or bottles of tequila to reflect remembrance and recognition of family members who had died.  We walked over to the community graveyard and it was beautiful with hundreds of candles everywhere and people dressed in colorful costumes and masks.  There was no mourning, only joy and laughter and deep cultural connection.

I think what I found so personally moving while observing this thousand-years-old tradition was how death (and therefore life) were being celebrated with such joy in honoring and remembering loved ones. Everyone was smiling and laughing and playing fun music and inviting us to celebrate with them.

The Day of the Dead originated several thousand years ago with the Aztec, Toltec, and other Nahua people, who considered mourning the dead disrespectful.

flowers and skull for Dia de los Muertos

I have never forgotten this experience and since then, every year on that day, I too participate.  I assemble in one place pictures of my loved ones who have died, including beloved pets, light a candle and remember them with love and gratitude.  I invite you to do the same if it so moves you.

In our work at EOLCCA, the Day of the Dead resonates so clearly with the dignity, family presence, and peace we wish for our own loved ones, as well as those reaching out to us here in California who are facing terminal illness.  We continue to help our clients and their families navigate the health system in their final months and obtain the end of life care they desire.  We gladly accept donations to help us continue this much needed service.

If (after some normalcy returns to our everyday lives) you ever have the chance to visit Mexico for this one-of-a-kind holiday, I strongly encourage you to go for it!  Here is a link to a National Geographic article that will tell you all about it.

Medical Aid in Living

People seeking MAID are vibrant, courageous, and thoughtful. They know who they are, define the rules of their life, and are clear on their values, including the meaning of living. My last visits with them are typically marked by a sense of clarity and peace.”

 

Benzi M. Kluger, MD, MS, Medical Aid in Living
JAMA Neurol. Published online August 24, 2020

Dear Readers,

We are sharing this excellent article from JAMA Neuro, recently published online, because it is a beautiful tribute from a physician to medical aid in dying (MAID).  For many people there is so much mystery about the process of medical aid in dying.  For some, as with any uncertainty, this can bring anxiety and fear to the table.  As someone who has worked with people facing their dying for nearly ten years, I never cease to be moved at witnessing the grace, courage and honesty that people show when facing end of life decisions. The author of this piece does a beautiful job of describing not only his patient’s journey in accessing medical aid in dying, but also those of others.

I had the honor of speaking to a young woman recently who reached out to End of Life Choices California.  At 35 years old, she is bravely facing a Stage IV breast cancer diagnosis for which she has been told there is no cure.  She is just realizing that she not only needs to plan her life, but needs to plan her death.  We discussed many things, but the one thing that I think brought her comfort was hearing about what it is like to actually die from taking a lethal dose of medication through MAID.  I shared with her that through the many experiences I have had over the years of attending MAID deaths, the overarching feeling I have always observed and experienced is one of peace.  When people who are already dying are given the chance to be in the driver’s seat of their experience, rather than allowing the disease to wreak havoc in their lives and the lives of their loved ones, there is a peacefulness that comes with that.  Family is present, love is shared, goodbyes are heartfelt.  The person dying is able to relax and be held in love as they die.

What more could any of us want, truly?

peaceful river scene

My experience with this is why I have stayed active in the field and why I helped spearhead the formation of End of Life Choices California.  In the article, the physician said the referring physician “had not developed a response to requests for MAID and did not know if she would participate”.  We see this all the time here.  Part of our mission is to provide education to physicians and hospices in order to help eliminate this major barrier to end of life care.  We can help a physician wishing to learn more about MAID by putting him/her in touch with other physicians who are experienced and willing to offer guidance and support.

 

We also encourage all individuals who are thinking about their end of life care and wishes to have a conversation with their primary or specialist physicians NOW.  These conversations take time.  Many physicians are still grappling with how to deal with a MAID request. It is important to identify a physician who will support your end of life choices, whatever they may be, prior to a time you are actually ready to act on those important decisions. Discussions about Advance Care Planning with family and physicians are helpful in this regard. You can find guidance on our website here.

California is making great progress.  The 2019 California Department of Public Health’s annual data report on the use of California’s End of Life Option Act showed that 37% more physicians prescribed MAID than in the previous year.  That gives us hope that we will one day be out of a job.  But for now, we continue to help those who contact EOLCCA looking for support and information about end of life choices.

If you would like to support End of Life Choices California’s work, please make a donation.  We are very grateful for gifts of all sizes.  Thank you.

 

California End of Life Option Act 2019

The recently released 2019 data report on the California End of Life Option Act highlights, among other things, the welcome progress made in the increasing number of physicians prescribing medical aid in dying.

Dear Readers,

In 2019, 246 unique physicians wrote MAID prescriptions, up from 180 in 2018, an increase of 37% from the year before.  This matches the 37% increase in the number of prescriptions (618) written in 2019, up from 452 written in 2018.

This is trending in the right direction.

stethescope

More needs to be done

From our experience over the past 12 months, fully one third of all calls we receive pertain to seeking help finding a physician who participates in the California law.  While the 2019 year data is encouraging, the report also indicates that there is more work to be done to ensure that all individuals facing a terminal illness are both informed about and have access to medical aid in dying.  The report reflects a disappointing lack of diversity among the people who received prescriptions for medical aid in dying and used MAID last year in this culturally rich and very diverse state.

Specifically, according to the report, 353 White Californians (87%) utilized the law in 2019, while comprising just over a third (36.5 %) of the total population of California. Alternatively, 5 Black (1.2%), 26 Asian (6.4%), and 16 (4.0%) Hispanic Californians accessed the law in 2019, not even closely matching their demographic representation of the state’s population (Black: 6.5%; Asian: 15.5%; Hispanic: 39.4%).

CA DPH logo

As attention throughout the country has become laser-focused on racial justice, it is past time to remedy this specific disparity in access to medical aid in dying under the California End of Life Option Act.

Out in the Community

While we have continued to provide in-service training sessions for hospice personnel through video conferencing during the stay-at-home restrictions and continue to work with clients extensively by phone, once the threat of COVID-19 is finally mitigated, our EOLCCA volunteers look forward to getting back out in the community.  We will direct our outreach efforts to broaden end-of-life planning education to reach a more diverse community of terminally-ill Californians.

We want to ensure that every person is aware, early enough in their terminal diagnosis, that in addition to accessing hospice care, he/she may qualify for California’s End of Life Option Act and if so, has the right to request a physician’s prescription for medical aid in dying.  If they would like an EOLCCA volunteer to help them navigate the often cumbersome and lengthy process involved in accessing MAID, including finding physicians who participate, as always, we will be there to support each person and their family members for as long as they would like our help.