Advantage Health Hospice: End of Life Options

February 24, 2024 10 AM  This event is for hospice personnel and is not open to the public.

The presentation will highlight the California’s 2016 End of Life Option Act (EOLA), also known as Medical Aid in Dying (MAiD)—as well as subsequent changes to the law. The background, overview, and specifics of this law such as who is eligible, the process for obtaining the prescription from the patient’s physician, and ingestion guidelines will be outlined. Latest trends, ongoing barriers and issues, and opportunities for collaboration will also be discussed.

Presenter: Lynne Calkins, CRNP, member of the Advisory Council for End of Life Choices California (EOLCCA), will introduce our organization and the free services of personal support and education provided through a dedicated team of volunteers.

Questions: Contact, Speaker@endoflifechoicesca.org


End of Life Choices California

End of Life Choices California’s mission is to provide Californians the information and support to successfully navigate their legal end-of-life options.  Relevant topics include Advance Care Planning; the California End of Life Option Act (EOLA); eligibility requirements for Medical Aid in Dying (MAiD); and Voluntary Stopping Eating and Drinking (VSED)–a legal option in all 50 states. Our volunteers are very knowledgeable about both hospice and palliative care and can explain the differences between the two services.

Be sure to check our Resources page for Q/A; information on books, films, and organizations; sign up for our blog; see upcoming events; and so much more.  To request a speaker for your group or organization, click here.

If Only We Had Known

We’d like to share a story with you about a friend of EOLCCA who attended our Bereavement Group after her husband died using medical aid in dying (MAiD). She joined us recently to tell her story at a Palliative Care Physicians conference where we were on a panel, and it was so moving we decided to share it with you. Please meet Trudy, a lovely person from southern California. (Her last name is withheld to protect confidentiality.)

Trudy has a Western Swallowtail butterfly tattooed near her heart, a constant reassurance of the presence of her beloved husband, Gary. As he lay dying on their flower-filled patio, Trudy remembers “the wind chimes chimed, and I saw a Western Swallowtail butterfly – the way he always comes to me now . . .”

photo of a Western Swallowtail Butterfly

Gary’s final years had not been so filled with grace. First diagnosed with stage 4 lymphoma in 2019, he underwent months of chemotherapy and, later, a bone marrow transplant in another city. By late 2022, Gary was back home, but weakened. He and Trudy were briefly optimistic when a scan showed no cancer, but it turned out to be only a short reprieve.

Palliative Care vs Hospice

In January of 2023, Gary accepted palliative care – “which we had soundly rejected earlier,” Trudy explains, “because it felt like we were giving up on curing Gary of cancer.” Hospice care was not an option at this point because Gary could not go on without regular transfusions and trips to the hospital to drain fluids. Pain medications were inadequate, and Gary’s palliative care team seemed unable, or unwilling, to make necessary changes. It was at this point that hospice was called in.

Medical aid in dying

Late in this journey, the pair learned of the California End of Life Option Act, which empowers dying individuals to take control of their final days and weeks. It’s what they learned along their journey that Trudy hopes might help others avoid some of the pitfalls that consumed precious time and energy.

Unnecessary roadblocks

“I was a resource teacher,” Trudy says; “and know how to use technology.” But even with those skills, when Gary was diagnosed with a probable life-ending cancer, they were denied complete and detailed information about their options. “There ought to be a policy,” she says now, “that people dealing with terminal patients at least have a simple requirement  to hand them a brochure.” In fact, physicians uncomfortable discussing terminal diagnoses (as theirs was) or unsupportive/uneducated about the California End of Life Option Act, is sadly often an early roadblock to empowering patients with the information they need.

“If only we had known . . .”

Understanding what services are available, often mandated, is critical to those dealing with terminal diagnoses, Trudy emphasizes. In their case, determined to pursue every available possibility for a cure or remission, she cites best and worst case scenarios and many in-betweens. Their social worker was excellent (“Everyone should have a knowledgeable social worker!”) and provided both help and comfort. But a thorough understanding of two critical pieces of end-of-life care, early on, would have made a difference. For example, “we strongly rejected palliative care,” Trudy says, “because it felt like we’d be giving up. It was very unclear to us. Everyone should know the difference between palliative care and hospice and the important benefits of both.”

Trudy also urges better information and understanding about pain management. Gary’s pain medications proved inadequate as he neared the end of his life and the two of them argued for changes to alleviate his suffering.

Palliative care is focused on symptom relief, including pain relief, with a goal of improving the quality of life for both patient and family, while receiving treatment. It does not require a diagnosis of terminal illness or that all treatment be forgone.

Hospice care is for the terminally ill with an anticipated life expectancy of six months or less, when cure is no longer an option. The focus shifts from treatment to symptom management and quality of life for both the patient and their family/loved ones.

Trudy and Gary’s journey was the two of them throughout. A couple of introverts “who would never have gotten together if online dating hadn’t existed,” they met online in 2006 and married in December of 2014. Throughout their marriage, they enjoyed hiking and being in nature, even naming their company for a California sunflower. After Gary chose to use MAiD, when the time came she and friends filled the patio to overflowing with flowers and surrounded him with “a bubble of beauty and love.”

As part of his legacy, Trudy is helping spread awareness about end-of-life care and medical aid in dying, which provided Gary with the the calm and peaceful death he wished for.

++++++++++

A lifelong newspaper and magazine writer, EOLCCA Board Member Fran Moreland Johns has published fiction, nonfiction, and several books. Her focus on end-of-life issues includes many volunteer years, numerous articles and one book, Dying Unafraid. She holds a BA in Art from Randolph-Macon Woman’s College, and currently blogs at Medium.com and franjohns.net. Her short story collection, Marshallville Stories, was released in April 2022.

EOLCCA supports a strong team of experienced volunteers throughout the state, ready to help families – like Trudy and Gary – with information and support to navigate their end-of-life planning and choices. That includes obtaining aid in dying through the California End of Life Option Act, helping them obtain needed services or adequate pain control, and finding physicians and hospices willing to prescribe. We wish we had met Trudy and Gary sooner to provide that help when they really needed it.  EOLCCA is a 501(c)(3) nonprofit organization and we rely on donations from individuals and foundations to support our work. To make a contribution or request an educational presentation, please visit ways to help.  Thank you!

Jackie Robinson Family YMCA Health Fair – San Diego

Wednesday, November 1, 9 AM-2 PM, Jackie Robinson Family YMCA Health Fair

Be sure to visit the End of Life Choices California (EOLCCA) information booth at this health fair.  EOLCCA Founding Director Lynne Calkins and End of Life Doula Sharon Harris will be on-hand to answer any questions you might have regarding advance planning and end of life options. Admission is a $10 gift card or cash.


End of Life Choices CaliforniaEnd of Life Choices California’s mission is to provide Californians the information and support to successfully navigate their legal end-of-life options.  Relevant topics include Advance Care Planning; the California End of Life Option Act (EOLA); eligibility requirements for Medical Aid in Dying (MAiD); and Voluntary Stopping Eating and Drinking (VSED)–a legal option in all 50 states. Our volunteers are very knowledgeable about both hospice and palliative care and can explain the differences between the two services.

Be sure to check our Resources page for Q/A; information on books, films, and organizations; sign up for our blog; see upcoming events; and so much more.  To request a speaker for your group or organization, click here.

 

 

New Report on Medical Aid in Dying in California

We are pleased to share with you the California Department of Public Health’s (CDPH) newly published 2022 Data Report on the use of the state’s End of Life Option Act (ELOA).  The report reflects several key changes that went into effect on January 1, 2022 (via Senate Bill 380) that made the law more patient-friendly in allowing physicians to prescribe medical aid in dying (MAiD) for their terminally ill patients who are eligible under the law. 

One critical provision that went into effect shortened the waiting period from 15 to 2 days (48 hours) between the two oral requests required of the patient to their physician for a MAiD prescription. EOLCCA strongly supported this modification as many terminally-ill individuals who wished to use MAiD endured unnecessary suffering that the law (originally passed in 2016) was specifically intended to alleviate. In this new report, we are gratified to learn that:

“Out of the 1,204 individuals who started the end-of-life option process in 2022 and received a prescription during 2022, 947 individuals, or 78.7 percent, waited less than 15 days between the two verbal requests.”  

Almost 50 percent increase

Equally important to EOLCCA is the fact that the number of people who obtained a MAiD prescription increased by almost 50% compared to 2021. Universal knowledge that California has this law is a critical missing element that persists as a major roadblock for those who might request medical aid in dying. 

Too many people who might qualify remain woefully uninformed about the possibility of MAiD at key health care decision points in their end-stage terminal illnesses.

One of EOLCCA’s primary objectives is to continue to reverse that trend through comprehensive targeted education programs about the ELOA to hospices, medical practices, diverse local community organizations, houses of worship, and retirement communities. This year alone, our Speakers Bureau has already provided 42 educational presentations around the state. Please visit our Speakers Bureau webpage to learn more about this program.

volunteer at bedside
More good data

Several other data points of the report include: 

  • The vast majority (over 95%) of those who used MAiD in 2022 were receiving hospice and/or palliative care.
  • Those who utilized MAiD were numerically more white and had completed more education than the state’s diverse population. This is an area of extreme importance to EOLCCA as we work to expand our outreach and education efforts. 
  • About one-third of the people who receive a prescription never use it. 

To this last topic, anecdotal evidence we’ve accumulated through our counseling of scores of patients, indicates to us that having the prescription in hand has its own palliative effect, giving a measure of comfort and control to the patient. As a result, their anxiety goes down, their pain level goes down, and they are more able to relax into their dying process and never feel the need to take the medication. What a wonderful gift for people to have. 

I encourage you to read the report for yourself. It discusses in much more detail what peoples’ diagnoses were, their demographics and many other interesting factors. The report can be accessed here.

The report also showed that 84.5 percent of those who utilized MAiD in 2022 informed their family of their decision. In keeping with August designated as National Make A Will month, if you need assistance in preparing your own Advance Care plans, to better inform yourself or facilitate end-of-life discussions with your loved ones, please contact us.

In conclusion, while the results of this report show some encouraging advances, there is still much more work to be done. If you wish to inform, educate and help more terminally ill people access a peaceful death on their terms, please learn morevolunteer, or consider supporting our work by making a donation here

Alternative End of Life Workshop

Thursday, October 26, 9-11:30 AM: Alternative End of Life Options

Be sure to visit the End of Life California (EOLCCA) information booth at this workshop sponsored by St. Paul’s Program of All-Inclusive Care for the Elderly (PACE), a managed health care plan exclusively for seniors. ELOCCA Founding Director Lynne Calkins and client volunteer Judy Schnack will be on-hand to answer any questions you might have regarding advance planning and end of life options. This event will be hosted at St. Paul’s Plaza in Chula Vista.

Point of contact for this event is Erin Clements, Outreach Specialist, St. Paul’s PACE, 619-621-3369.


End of Life Choices CaliforniaEnd of Life Choices California’s mission is to provide Californians the information and support to successfully navigate their legal end-of-life options.  Relevant topics include Advance Care Planning; the California End of Life Option Act (EOLA); eligibility requirements for Medical Aid in Dying (MAiD); and Voluntary Stopping Eating and Drinking (VSED)–a legal option in all 50 states. Our volunteers are very knowledgeable about both hospice and palliative care and can explain the differences between the two services.

Be sure to check our Resources page for Q/A; information on books, films, and organizations; sign up for our blog; see upcoming events; and so much more.  To request a speaker for your group or organization, click here.