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.

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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!

San Diego’s Sixth Annual Palliative Care Professional Conference

December 1, 2023, 8:30-4:30; CSU San Marcos Campus

Charting the Course: Supporting Patients and Families Through Serious Illness and Beyond

End of Life Choices California (EOLCCA) Board of Directors members Stephen Poses, MD, and Lynne Calkins will be among the panel members.

Click here to register for the conference

Click here to view the conference program: 

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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.

Petaluma Senior Center

Quality of Life at the End of Life: What Does It Take to Get There?

This is an in-person presentation at the Petaluma Senior Center, and is open to the public. Monday, July 10th, 1 PM

Presenters Sharon Ziff, Volunteer End of Life Choices California and Retired Hospice Nurse, with Dr Andrew Wagner, Palliative Care/Hospice Specialist will discuss the importance of advance planning and communication with loved ones for a good “final chapter.”  The value of palliative care, hospice, and other options available to those at the end of life, including Medical Aid in Dying (MAiD) will also be covered. 
RSVP at the Petaluma Senior Center or call 707-778-4399
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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. We are strong advocates for both hospice and palliative care.

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.

 

Medicare wants you to talk to your doctor

You may not be thrilled to have “aged into” Medicare, but there’s a silver lining! Medicare offers significant support for communicating about your healthcare wishes and managing your end-of-life options. 

Talking to your doctor

Medicare also covers the cost of health services meant to improve quality of life when a cure is no longer possible: hospice care during the last six months of a terminal illness, and palliative care, to help manage a serious or terminal illness with a longer term prognosis.  As important – but not well used – is the fact that Medicare covers advance care planning discussions with your physician as part of your annual wellness check.

Advance directives

Advance care planning is something every adult is encouraged to do and complete while in good health, ideally well before a health crisis or terminal diagnosis. Often advance directives are prepared and health proxies determined at the same time as your estate planning documents and power of attorney and executors are finalized. Preparing your advance directives offers the chance for you to have invaluable conversations about your care management and end-of-life wishes with your loved ones as well as your physician, thanks to Medicare.
Medicare also requires hospitals and skilled nursing facilities to ask at the time of admission whether you have an advance directive and to note its existence in your medical record.

Without your documentation, providers who do not know you will be making health care decisions for you.

Palliative care

Palliative care is a notoriously underutilized health service that focuses on managing  pain and symptoms caused by chronic and debilitating illnesses. Under Medicare, palliative care is available to you whether or not you have a terminal disease, although it is most commonly used when you have decided to stop treating a terminal disease. Palliative care can increase your quality of life enormously. Because you’re no longer in such distress, palliative care also helps relieve the distress felt by your family and friends.  Medicare covers the costs of palliative care, so you should ask your doctor about it in order to take advantage of the relief it can offer you as soon as possible. 

 

Hospice care

Hospice is a combination of comfort care services including nursing care, palliative medicines, counseling for you and your family, and a supportive and knowledgeable resource for your immediate caregivers. The key benefit of hospice is being enabled to spend your last days in the surroundings of your choice – usually your home. If, like most of us, you want your death to be as peaceful and calm an event as possible, I encourage you to consider entering hospice as soon as your death becomes reasonably foreseeable rather than in a rush in the last few days.  

Because Medicare covers almost all the costs of hospice, there is no reason to delay once your doctor certifies that you’re eligible. This typically happens once you’re within six months of death, an interval that can be extended if death does not occur within that period.  

Where medical aid in dying (MAiD) fits in

If you live in California and are suffering from a terminal illness with a six months or less prognosis, the state’s End of Life Option Act enables you to request medical aid in dying from your physician. If you’re receiving hospice care, but the path towards death involves prolonged pain and suffering, you can choose to step off that path as long as you meet the legal requirements. To obtain medical aid in dying, you’re required to make two oral and one written request to your doctor; he or she confirms you’re within 6 months of dying; and a second physician must also confirm the attending physician’s opinion. After a 48-hour waiting period, your doctor is allowed to write your prescription for life-ending drugs. 

Even if you’re eligible for and obtain a MAiD prescription, you’re free to make whatever end-of-life plans you wish, including when, or if, you ingest the medication. For some, knowing the medication is there if needed, offers enough relief to let death take its natural course. It’s important to note that aid in dying medication is not covered by Medicare.

Since 2016, Medicare has greatly expanded the range of end-of-life services it covers. These end-of-life services enable you to learn about and choose the care options you want, and to spend the last months of your life with your family and loved ones as comfortably as possible.    

Note: Costs covered by Medicare may require a co-pay or deductible depending on the particular Medicare, Medicare Advantage, or Medicare Supplement plan you have. It’s well worth the time now to investigate what services are available and how you would want your care managed before facing a debilitating or terminal illness.

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Adrian Byam, a member of EOLCCA’s Board of Directors, has been thinking about and researching end-of-life decision-making for the last decade.  After retiring from a 40 year career as an entrepreneur and senior executive in the IT industry in 2012, he began a PhD program in neuroethics – a new field combining neuroscience and medical ethics – at the University of British Columbia (UBC).  His thesis showed that the choices made by surrogate decision-makers for ICU patients often failed to meet patients’ values, and suggested new ways to ensure patients’ autonomy is truly respected. Our social and medical systems today rarely inform us about the choices available to us in the last stages of our lives. By working with EOLCCA, Adrian hopes to help his fellow Californians learn about the choices that are legitimately theirs, and empower them to exercise control over the last days, weeks, and months of their lives.   

 

EOLCCA supports a strong team of experienced volunteers throughout the state, ready to help anyone, anywhere in California free of charge with information and support regarding all end-of-life planning and choices, including aid in dying through the California End of Life Option Act. You can find comprehensive information on our user-friendly website. To support our work, or request an educational presentation, please visit ways to help.  Thank you for your support!