Upcoming San Francisco Volunteer Training Aug. 18

Hello Northern Californians!

In case you haven’t already heard, we want you to know about an upcoming fabulous opportunity.  We have scheduled our first northern California volunteer training in San Francisco for Sunday, August 18 from 10 am – 4 pm (includes lunch).  We still have four seats left to fill and would love anyone interested to join us!

Information About our Volunteer Teams

Client Advocate Volunteers provide the following services:

  • Thoroughly explain all the different options for dying well and how to achieve them; including stopping life-preserving medical treatments, seeking palliative care, entering hospice, voluntary stopping eating and drinking with the support of hospice, palliative sedation, and medical aid in dying.
  • Help people navigate through their dying process, from beginning to end. Sometimes this takes days, sometimes weeks or months: sometimes 1-2 meetings, sometimes many more.
  • Advocacy and support for clients whose wishes are not being met or who are not getting adequate pain or symptom management.
  • Meet with families to help facilitate discussions about the client’s end-of-life wishes.
  • Provide information and support to family members regarding the process of their loved one’s dying, what to expect and how they can best provide compassionate and helpful support.
  • Provide support and reassurance to the client as he/she navigates their way through the process of accessing medical aid in dying and encouraging the client/family to advocate for themselves. We are willing also to advocate for them if necessary, such as helping the client find physicians willing to prescribe and facilitate a conversation with physicians or hospice to help clients get needed services or adequate pain control.
  • We are able to bring an experienced, calm, peaceful and reassuring presence on the day of planned death, to help review instructions and provide moral support and comfort to both the client and family.
  • Assist in completing or understanding advance directives.

Our EOLCCA volunteers also can be trained to provide educational presentations to hospices, community groups and others to help the public understand about ALL their end of life options.

Please complete a Client Advocate Volunteer application by August 10.  Once it is received, we will contact you with additional information including the location and address of the training session.  Please contact us if you have any questions or would like more information. We’d love to talk with you.

National Clinicians Conference On Medical Aid In Dying

We are pleased to announce that End of Life Choices California just became an official sponsor of the first-of-its-kind National Clinicians Conference on Medical Aid in Dying taking place at University of California, Berkeley on February 14-15, 2020.  

We are very excited and proud to be part of this national gathering of clinicians and others interested in sharing knowledge and experience with each other about medical aid in dying.  

For many years, clinicians have had to work hard to find reliable information for their patients who wished to participate in their state’s law allowing medical aid in dying. This groundbreaking conference will bring together informed and compassionate healthcare practitioners to share information, resources, experiences, and best practices in the expanding field of end of life care.  

End of Life Choices California is hoping to host a panel to discuss how we help individuals and families make difficult end of life choices through our client advocate volunteer program.

For more information about our program and services, how to become a volunteer, or to schedule a speaker for your group, visit our website.  Please also share our resources with your friends, family, health care providers, and colleagues.  Hopefully we’ll see you in Berkeley next February!

Please consider making a donation to support our work.  Thank you!

 

Client Advocate Volunteer Training Program Launched

EOLCCA inaugurated its first Client Advocate Volunteer Training program on June 2, 2019 in Tarzana, CA.  We spent a fact-filled day training four wonderful volunteers from the Los Angeles and San Diego areas, sharing information and reviewing best practices we expect from all EOLCCA Client Advocate Volunteers.   

Pictured above (r-l) are Stefanie Elkins, Judy Schnack, Karen Morin Green, Jill Schock, Lynne Zamarin, Judy Epstein, Lynne Calkins and Claudia Comins

We discussed the caring approach each volunteer will adopt in providing non-judgemental support to a terminally-ill client, and their loved ones, as they navigate the process of exploring all legal end of life options available to them in California, including medical aid in dying, allowed by the End of Life Option Act.  During that stage, the client and/or family may seek our experience and support as they interact with a new and unfamiliar array of healthcare providers, or to effectively communicate to family and their physicians the decisions they have made consistent with their personal values, beliefs, and desires.

We also reviewed the importance of Advance Care Planning (ACP), so that our volunteers can be of assistance to individuals who wish to learn more about preparing Advance Directives, well before they are facing a terminal or debilitating illness.  ACP is a vital resource that enables individuals to document now their future healthcare expectations, so that if the person becomes unable to communicate their healthcare wishes, their loved ones and healthcare providers are clearly informed.  ACP is, in fact, a useful tool for adults at all stages of life, young and not-so-young! Participation in advance care planning has been shown to reduce stress and anxiety for patients and their families, and lead to improvements in end of life care. 

Please browse our website for comprehensive information about all end of life options in California, Advance Care Planning, and to learn more about the resources, services and support EOLCCA provides at no charge.  

 

UCSF drops proposed partnership with Dignity Health!

We are delighted to let you know that patient choice has won again!  The University of California San Francisco has decided not to pursue a proposal to partner with Dignity Health in San Francisco.  Bravo UCSF!!

UCSF Chancellor Sam Hawgood and UCSF President & CEO Mark Laret sent out a letter this morning with their decision.  

 We heartily agree with the words of our Board member, Dr. Bob Brody, a physician at UCSF, “this is an amazing outcome”.  Yes it is!

 You can read more about UCSF’s decision here in their updated FAQs.

Judy Neall Epstein,

Founding Director, President

End of Life Choices California
info@endoflifechoicesca.org

How to Make Doctors Think About Death

An Opinion piece was recently was published in the New York Times by Theresa Brown entitled, How to Make Doctors Think About Death.  It was a great piece and right on target.  It discusses how often physicians are, out of habit, treating symptoms without seeing the big picture in a dying patient.  It can be difficult for the physician to admit s/he has run out of options and there’s nothing left to do.


Here is an excerpt from Ms. Brown’s Opinion:  

It made sense to switch him to “comfort measures”: to focus on alleviating his suffering rather than curing him.  It would also make sense to have general treatment guidelines for situations like this, guidelines to indicate when comfort, not cure, is most appropriate. But no such guidelines exist.”


The sad truth is that no such guidelines exist for physicians. However, guidelines do exist for patients!  The other sad truth is that most patients don’t know it. They follow suggestions and prescriptions and trials and more trials even in the face of their oncoming demise. Everyone wants to think the next great idea will be the one to pull the patient back from the brink of death into a life full of meaning and options again. This is rarely the case.

At End of Life Choices California, we believe in planning ahead for such a situation. In addition to the Advance Care Planning documents we have provided on our website,we also offer information and advice about how to specify exactly what you want and don’t want at end of life. We all need to be specific about our wishes, discuss them and write them down. EOLCCA is available to help individuals as well as provide information about advance care planning to community groups and other organizations.

We DO have options at the end of life. We do have choice. We just need to know about it.

Please take the time to educate yourself, talk with your physician, talk with your family.  It matters not whether you are young or old, sick or well. All adults should think about this and write down their preferences.  We will not live forever and none of us knows how the end will come. Every day is a gift, so be sure your loved ones know what your ending looks like, should it come as a surprise or as an expected outcome of disease.

Happy Launch Day, End of Life Choices California!

From Merriam-Webster:

LAUNCH: to throw forward : HURL; to release, catapult, or send off (a self-propelled object); to set (a boat or ship) afloat; to give (a person) a start;  to put into operation or set in motion : INITIATE, INTRODUCE; to get off to a good start.

All of these descriptors apply to today’s launching of the brand new End of Life Choices California’s website. We particularly like ”to get off to a good start” although catapult sounds interesting too. This is our hope and dream; to get EOLCCA off to a good start. The four of us; Karen, Claudia, Lynne and I all came together with this brave idea which has become a mission to do something to help the people of California gain access and knowledge about all their end-of-life options.  Our hope is that having this knowledge will help ensure they can have the death they envision; hopefully, a peaceful death when and where they would like to die. We formed EOLCCA in order to meet that mission.

Right at the beginning, we talked to Sue Porter, the Founding Director and Executive Director of the successful End of Life Choices Oregon and she basically told us to really think it through as it was a TON of work.  I think she used the word TON a few times in that initial conversation. We took her kind advice seriously but were undaunted by this. We all knew going in that it was going to be a lot of work and, yes, it has been a “ton” of work.  At this early stage of our organizational development, EOLCCA is an all-volunteer effort. But we are excited, enthusiastic, passionate and deeply committed to its mission.

We have all volunteered or worked in end-of-life care from one aspect or another for many decades, collectively. We have extensive experience from having observed both “good” deaths and “bad” deaths. Granted, these terms are subjective. However, most of you would agree, we hope, that there is a true difference if you have had close experience with dying.  

To us, a “good” death is a death that occurs where the dying person wishes it to occur, and for most of us, that is at home, in our own bed.  It is knowing and understanding that death is coming and preparing well for that final journey. It is having a chance to say goodbye to the important people in our lives; our partners, our parents, our children, our long-time friends, and other loved ones.  It is having a chance to finally say things that had been left unsaid. It is possibly taking a lethal dose of medication, prescribed by a caring physician under the End of Life Option Act, at the time and place of our choosing, and falling gently into a final, deep sleep surrounded by people who love us.  

A “bad” death, on the other hand, often happens unexpectedly, or following a terminal and painful decline.  A serious medical event leads to an ambulance, a hospital and intensive care. Often a ventilator, tracheotomy, or feeding tube is involved, often against our wishes.  Sometimes this kind of death comes after a devastating or long, lingering and debilitating illness that slowly robs us of our ability to perform daily tasks as we become more and more dependent on others for our care.  For some, this situation is an intolerable loss of dignity and control. Hospice and palliative care experts do an excellent job of caring for people at the end of their lives. They are trained specifically to manage pain and other uncomfortable experiences of dying. However, they too are not perfect, just like the rest of us. Sometimes, despite their training and protocols and caring, we may still have an unbearably painful and uncomfortable death with little dignity left intact at the end. This often also leaves a visual memory of our suffering observed by our families and remembered for the rest of their lives.    

We realize this is only our opinion.  Our hope is that we can reach as many people as possible in California to explain to them that they have a say in how they die.  That they have choice. To make sure they are offered the opportunity to learn about ALL of their end of life options, from hospice and palliative care, to voluntary stopping eating and drinking with excellent medical support, to the possibility of stopping unwanted medical treatment and allowing a natural death to occur, again with excellent medical support, or choosing to access medical aid-in-dying via California’s End of Life Option Act.  We want people to have this information so they can have conversations with their families and caregivers, hopefully providing the support they need and, as a result, have less anxiety and fear about dying.

The truth is that we all die.  There is no avoiding it, at least not that we know of.  Why not plan for an ending that can retain the dignity of a life lived well and offer some peace to the people you leave behind?  

So that’s why we’re here.  You can read more about what specific services we are offering on our brand new website.  Our volunteer teams provide information and personal support to Californians free of charge.  We are entirely supported by private donations. Our Mission Statement is below. YOU can help us get off to that good start by telling people about us and/or by making a donation, large or small. Everything helps. Feel free to send a check to the address below or on the website.  We would be very grateful for any help you can provide.

Lastly, feel free to sign up here to receive future blog posts which we plan to send out regularly.  We will discuss all kinds of interesting news and ideas in the world of death and dying.

Happy Launch Day, End of Life Choices California!!

MISSION STATEMENT

End of Life Choices California provides information and personal support regarding California’s End of Life Option Act and all other legal end-of-life options to the medical community and to the public.

www.endoflifechoicesca.org