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 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.

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.