Cycles of Living and Dying…

Originally published March 4, 2020 and reprinted with permission

Sebastian entered the world eight weeks ahead of schedule, weighing all of two pounds. His lineage is Korean/African American/German, which may offer an insight into how determined, individualistic and utterly beautiful he is. He had emerged from NICU (the neonatal unit at Kaiser) and gotten his fighting weight up to nearly six pounds when he first came to visit my husband Bud.

Bud w Sebastian 1.3.19 

 

 

 

Sebastian (unimpressed) meets his honorary grandfather

That was about mid-January. In early February, about the 11th, Bud’s congestive heart failure of many decades took a sudden downward turn, and by Valentine’s Day he was in his last hours of life on this planet. Sebastian came to visit – well, he brought his parents too, but they are not central to this story.

His mom plunked Sebastian onto Bud’s chest, as he lay breathing heavily on his hospital bed, red balloons snagged from the downstairs dining room floating around. The last deliberate movement I can associate with my husband as he died was his left arm making a sort-of patting gesture toward the tiny pajama-clad bundle of new life on his chest.

We should all sign up for this: old life ending as new life begins. Seeing life as a natural continuum might not make much difference as we enter, but it could help us take more control of our exit – simply by confronting the fact that we will indeed exit. I like to think that my husband’s last moments were somehow heartened by the certainty that life does, and will, go on.

Bud was fortunate in other ways. Having reached his 90th year, he had been vocal about his readiness to die and had expressed his wishes clearly in writing. There are many good options now: hospice or palliative care, enforceable documents like DNRs and POLST forms (Do Not Resuscitate, Physicians Order for Life Sustaining Treatment,) etc. POLST formAnd in a growing number of states there is a right to confront mortality by hastening one’s dying. In California where I live there is the End of Life Option Act which gives terminally ill, mentally competent adults the right to ask their physician for life-ending medication. For many, that is a way to meet life’s end with extraordinary peace.

A relatively new organization, End of Life Choices California, is part of this continuum, this big picture of Birth/Life/Death/Peace. EOLCCA provides information and personal support re California’s End of Life Option Act and all other legal end of life options. It is among several nonprofits dealing with critical aspects of end-of-life care – and helping us all see more clearly that death, like birth, is a universal experience.

When training, recently, to be an EOLCCA volunteer I met a remarkable fellow volunteer named Lori Goldwyn, who may understand both ends of this continuum as well as anyone around. After earning an M.S. degree in Education and working in women’s health for several years, Lori had a homebirth 30 years ago that led her to become a childbirth educator and labor doula. “I came to believe in the value of supporting the natural process as much as possible,” she says, “for both the mother’s and her baby’s sake. A woman in labor contends not only with the pain of labor,” Lori adds, “but with the intensity of realizing that there’s no way out. She can’t escape, quit or divorce this one. The only way out – as is true with the rest of life – is through.”

Eventually the link between natural birth and natural death became clear. “While being with my mother in an inpatient hospice in 2010,” Lori says, “I was struck by the similarities between the birthing and dying experiences.” That epiphany led to her working in hospice and palliative care, as an End of Life Doula, and now also as a volunteer with EOLCCA. Her website, Comings and Goings, reasserts the validity of this continuum with this subtitle about Doulas: Caregivers to those on the threshold points of our Earthly existence.Moon & clouds

“When we get that terminal prognosis, or as we lie dying,” Lori says, “there’s no escaping this reality, this ultimate inevitability.” She quotes the Italian director Federico Fellini: “All we can do is try to become aware that we are part of this unfathomable mystery. We are a mystery among mysteries.”

As he grows, I think Sebastian will also understand this mystery, this continuum, as well as anyone. Sebastian started off in a softly-lit incubator watched over by his mother, a nurse. Weeks later, his honorary grandfather was leaving the planet. And they were able to trade greetings on their journeys.

 ~~~

Fran Moreland Johns is the author of Dying Unafraid (Synergistic Press), a nonfiction book telling of people who did just that.  Inspired by her personal experiences, Dying Unafraid led to other published work on end-of-life issues. Continuing her leadership and long-time activism in this field, she has recently joined the End of Life Choices California Board of Directors and serves as a client advocate volunteer with EOLCCA in Northern California. 

End of Life Choices California offers information and non-judgemental personal support to anyone seeking help managing end-of-life care planning or decision-making in California.  Please visit our website www.endoflifechoicesca.org for more information. To speak with one of our volunteers, please call 760-636-8009.  All our services are free of charge.

Please contribute now to support our work. Thank you!

The Beauty of Choice

Introduction:  This beautiful piece was written by one of our Client Advocate Volunteers, Jill Lloyd, in southern California. We are honored to be able to share it with you. We continue to expand our volunteer base and if you are interested in becoming a volunteer, please let us know. And, if you or someone you know are suffering from a serious or terminal disease and wish to discuss all the end of life options, without judgement and with great compassion, please give us a call. We can help. – Judy

Choice is the most powerful tool we have.  It defines how we live but it can also define how we die if we are ever in the situation of facing a terminal illness.

Both of my parents chose to die on their own terms.  But this was many years before California’s End of Life Option Act became law (EOLOA).

And it was not so much about bypassing the suffering of a terminal illness, far from it actually, but about their personal faith.  They were both devout believers in Christian Science, a religion set on beliefs and practices belonging to the metaphysical family in which sickness is considered an illusion that can be corrected by prayer alone.

So even though neither of them was diagnosed since they did not go to the doctor, they faced their illness relying on prayer.

My mother died at age 35 of breast cancer.  I was 5 years old. I had little understanding of the circumstances other than my child’s perspective: religion was responsible for my mother’s early death.  But I also had anger toward her for choosing such a path.   

Years later my father became ill.  He was 67 and started to have symptoms of what appeared to be congestive heart failure.  I had become a hospice volunteer by then and having seen many people at the end of their life, though not a doctor, I was able to recognize the signs of someone nearing death. I fought with him to get treatment at least to alleviate some of his symptoms of pain and breathing difficulties, but he refused and basically said to me “This is my choice.”  I still had old anger regarding my mother’s death, and now it was compounded by my father’s choice to do nothing.  He recognized my concern and fear of him dying but wanted me to know “This is my choice. It doesn’t mean you should do the same if you were faced with a comparable situation, just that we all have to honor each other’s choices whether we agree with them or not.”  That can be tough to accept when witnessing the suffering of a loved one.

Prior to my father’s death my sister died at age 27 from malignant melanoma.   She chose the medical route and opted for any and all treatments available until the end, and even when there was no hope, doctors continued to “experiment “ with her.  She suffered quite a bit and died in a hospital.

I experienced several other deaths of loved ones, all of which had made different choices in their end of life care.  It was the unnecessary suffering that bothered me with several of the choices.  

My best friend Gayle of 50 years, who was the sounding board for me through all of my losses, knew my anger and disappointment at my mother’s choice, my father’s choice and my sister’s choice even though she kept fighting for her life.  My sister didn’t want to have the same experience as our mom, so she opted for medical treatment until the very end. Gayle and I talked about what we would do if we were faced with the same situations and followed the progress of the EOLOA as it went through the many stages and wondered if it would become law.  

Then Gayle was diagnosed with pancreatic cancer, the same week the EOLOA did become law in June 2016.  She saw that as a gift in some way as she realized quickly that there was no hope for her survival and felt the only bit of control over her life she had left was to choose how she wanted to die.   She expressed gratitude that the choice for Medical Aid in Dying was available to her as she felt it gave her the option to live fully until she was no longer able to, and then choose a peaceful transition.

She asked me to assist her in the process to complete the required steps to access the law.  She was with Kaiser already, and that made things go smoothly as they already had a patient advocate in place, doctors that would prescribe as well as serve as consulting physicians.  She also chose not to go on hospice care. Rather, she wanted to monitor her illness and select the best day to die based on the progress of her illness. She wanted to enjoy life as much as possible until her symptoms would start to impact her ability to do so as well as care for herself.

While I was supportive of whatever she wanted to do, I was heartbroken and would ask her to rethink it.  She never hesitated in her decision making and stuck to the desire to end her life on her terms. She found great comfort in that.

It was three months after her diagnosis that she started to feel many painful symptoms of the cancer’s progression and set the date within the week.

The morning of her death, which she asked me and another friend to attend, she got up and fed her animals, had a light breakfast and had a heartfelt conversation with us.  She expressed her gratitude for the friendship and for honoring her choice without judgment. She died peacefully and quickly, which preempted any long-term suffering.

I have reflected on my parents’ and sister’s deaths and how they wanted to live their final days.  All of them made different choices. All of them were living and dying on their terms, regardless if I agreed with their choices or understood them. And who knows if they would have chosen the same route as Gayle, had the law been in place back then.

But having been through this experience with Gayle, I came to have a better understanding and acceptance of these choices.

When I left Gayle’s house the day she died, I spoke with a friend of mine about what I had just experienced.  I was sad but also felt honored to have been in that sacred space and time with Gayle. And my friend said, “what you did was an act of love… pure and simple”.

When we love without condition, we honor people for who they are and the choices they make whether we agree with them or not.  It’s tough to watch our loved ones suffer. Only they can decide what is truly right for them, just as we want the freedom to choose what feels right for ourselves.

But that’s the beauty of it all.   We aren’t here to agree or understand other people’s choices; just to honor them as part of our unconditional love for them.

End of Life Choices California offers information and non-judgemental personal support to anyone seeking help managing end-of-life care planning or decision-making in California.  Please visit www.endoflifechoicesca.org for more information or to speak with one of our volunteers, please call 760-636-8009.  All our services are free of charge.

Please contribute now to support our work. Thank you!

Thank you Dr. Israel!

We applaud and need more doctors like New Jersey physician, Jessica Israel, MD to share the thoughtful journey that led them to participate in medical aid in dying (MAID) for their patients. In California and all the other states that have MAID, as well as in states that don’t yet have this legal option available but are working diligently to get similar laws passed, we need more Dr. Israels to be open about fully supporting the wishes of their dying patients.

It is our hope that the first ever National Clinicians Conference on Medical Aid in Dying, taking place on February 14-15 in Berkeley, CA, will provide guidance and support to those medical practitioners wishing to learn more about how to help their dying patients achieve a ”good death”. 

EOLCCA has made great progress in learning about and communicating with physicians in private practice  – and with hospices – in California who support MAID. These medical providers have been prescribing medical aid in dying and are accepting our client referrals for help finding a physician who will prescribe MAID.  We hope that following the conference, many more physicians and hospices will partner with us and our clients to adequately explore all their end-of-life options.  

Click below to read Dr. Israel’s story.

 A day like no other: The first time I helped one of my patients die  

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End of Life Choices California offers information and personal support to anyone seeking help facing end-of-life decisions through our statewide volunteer and education programs. You can read about all our services here on our website.

Barriers Persist in California and Elsewhere

The barriers to using medical aid in dying remain so high that in one state, pharmacists are fighting back and helping terminally-ill individuals find physicians willing to help. 

We know this because of a recent Kaiser Health News story by JoNel Aleccia. Aleccia is the same reporter who covered the first article about the Colorado physician, Dr. Barbara Morris, who was fired last August 2019 by her employer, Centura Health Corp.  Centura, a Catholic and Seventh-Day Adventist-run health care system, fired Dr. Morris for agreeing to prescribe life-ending medication to her terminally-ill, End of Life Option Act eligible patient, Neil Mahoney. We highlighted that story in our September 3 blog Barriers to Medical Aid in Dying Even When it is Legal.  Not only did Dr. Morris lose her job, she lost care of her patient, her office, and her malpractice insurance.

Aleccia wanted to know what happened to the patient, Neil Mahoney?  What happened to Dr. Morris? She takes us to Golden, Colorado where Mahoney and Dr. Morris filed a lawsuit; the case is pending.  Due to his declining health, Mahoney had to leave the suit, but was able to gain access to his state’s medical aid-in-dying law thanks to a pharmacist who reached out to him as part of “a network that quietly connects terminally-ill patients in Colorado with doctors willing to follow the law”.  

This compassionate group is called Dying with Dignity of the Rockies, Aleccia informs us.  We know of at least two pharmacists in California who fill aid-in-dying prescriptions who have indicated they are only too happy to match patients with physicians they know are willing to help.  

As Colorado pharmacist Rodney Diffendaffer points out, there are many doctors willing to help, but they don’t want their names on a public list.  California physicians feel the same, and we understand and respect that. He also points out that it is the patient’s choice to have the aid-in-dying drugs; no one else should have a say. 

The lack of physicians willing to prescribe medical aid in dying due to pressure from employers is just one of the many barriers that persist in California as in Colorado and the other states.  This reluctance may be based on religious or moral reasons, or fear of being fired or of censure by their employers or colleagues. Whatever the reason, as Dr. Morris said, “medical-aid-in-dying should be part of a continuum of care for dying patients”.  We agree with her wholeheartedly.

By late September, and thanks to a Colorado physician who had prescribed MAID only once before, Neil Mahoney had his medication in hand. Neil expressed great relief.  Now he was back in control of his living while dying, and had many plans to make: who will care for his dog, his cat, and what about his other belongings, while planning how to say goodbye to friends and loved ones. Neil took his life-ending medication after he became more frail, but while still able to swallow, a requirement under the law.  He took his medication on the evening of November 5, surrounded by his large and supportive Catholic family. He fell into a deep sleep and died an hour later, peacefully, as was his wish. 

What about Dr. Morris?  Her suit is pending in the courts, and she has found another place to practice medicine. When notified of Neil’s peaceful death, she was grateful he had found a way to access the law while also regretful that the religious bias of her former employer had prevented her from helping him. She went on to say that as a memorial to Neil she, and physicians and pharmacists like her “will continue to advocate for care focused on patient values and wishes.”

The Colorado physician who prescribed medical aid in dying for Neil stated that it is her job to relieve pain and suffering and to inform her patients of all the choices in dying available to them. 

This continues to be the mission and work of End of Life Choices California: informing Californians of all their end of life choices.  If you would like to help us carry on this mission, please make a donation here or complete a volunteer application here – or do both!  We need volunteers well placed throughout this massive state of nearly 40,000,000 people. 

A special thank you to JoNel Aleccia for her factually correct, excellent reporting on this important issue!

 

If you would like to support the mission of End of Life Choices California,
please click below and learn more about our funding needs.
Thank you!

The Path to a Good Death

This weekend, EOLCCA hosted our third Client Advocate Volunteer training in California.  It was a great day and we have some amazing new volunteers in our EOLCCA family.  Part of the training included sharing (anonymously) client stories with the trainees, and what attending a death looked like and felt like. It is always awe-inspiring for me to revisit those experiences.  

Over the ten years that I have been working with the dying, I have attended many planned deaths and each one is different.  Each person’s path to that good death is unique. Factors such as how family members feel, how the client feels about dying, cultural and religious norms, support by their medical team all come into play that day; one very important day for the client. 

It’s interesting to me that the path to a good death is a path we can plan for with our loved ones, choose for, hope for or be fearful of, though when we get to that final last step of dying, we do it alone.  All of us will die some day as it is part of the human condition. All of us will take that last step into death, and very few people have been able to take it and return, to tell us what it is like. It is an emotional, spiritual and physical journey.

We, at EOLCCA, have been honored to be present at many of these planned deaths.  

Just to mention a few: one woman died gazing out her floor-to-ceiling  windows at the forest, with her young granddaughter lying next to her holding her hand; one woman who spent her childhood in Hawaii died in a temporary living situation with her sister and me by her side, holding her hands, playing Hawaiian music and singing to her; one gentleman chose to die in a hotel room overlooking the ocean with his wife and friends there, after having a last drink of his favorite bourbon and having the opportunity to say goodbye; one woman died surrounded by her three adult children telling funny stories of their childhood, rubbing her feet and reassuring her that all would be well.  And then there was the family who lived far away from any of us or our volunteers, and we were only able to support them by phone. They were frightened of being the ones to prepare the medication for their father, who was very sure he was ready to die and whose physician had agreed and provided the lethal prescription for him. We were able to provide information and personal support to those grown children who found the courage to do this loving thing for their dad by providing him with his final wish for a peaceful death. They were so grateful for our support.

These are but a few of the amazing people and families who have crossed our path.  It is such an honor when their path of choosing a planned death with medical aid in dying crosses our path of being able to provide information and personal support, free of charge and with no agenda, to anyone who needs our help. I am continually struck by what a gift this is for them, and for us.  

As we continue to grow and train volunteers and meet the needs of more clients, we realize as an organization that we need help and cannot do it alone.  We know there is great need in the world for help for all kinds of situations and organizations, and we also know there is an important election happening this year.  However, if you have a few dollars to spare, and wish to support us in our work, we would be grateful to receive them so we can continue. And so that we can be there for you and your family when it is your time to walk that path and take that final step.

 

End of Life Choices California offers information and non-judgemental personal support to anyone seeking help managing end-of-life care planning or decision-making in California.  Please visit www.endoflifechoicesca.org to answer a variety of questions.  To speak with one of our volunteers, please call 760-636-8009.  All our services are free of charge.

If you would like to support the mission of End of Life Choices California,
please click below and learn more about our funding needs.
Thank you!

EOLCCA 2020 Hope and Vision

We have been thinking about how we want to grow in 2020 and are working to clarify our vision for the coming year. But, sometimes it helps to look back to where we have been and where we are now in order to look ahead. In doing so, we surprised even ourselves by how much EOLCCA has accomplished since its inception in February 2019. We wanted to share that with you: our friends, clients, and supporters. It has been a whirlwind year.

In ten short months, we have accomplished a LOT.  As an all-volunteer organization run pro-bono by the founders, we have already achieved several exciting milestones.  We started on a shoestring budget and to date have successfully raised $45,000 with the help of a major gift of $10,000, as well as donations from other kind and generous people who believe in our mission.

Those initial dollars enabled us to begin building critical infrastructure.  We,

  • obtained our official IRS 501(c)(3) nonprofit designation
  • created and are maintaining a welcoming, resource-rich website 
  • purchased essential data management software, insurance, and phone line
  • marketed our services and created a social media presence with Facebook postings, modest promotions and regular blog posts on the website 
  • developed curriculum for and hosted two volunteer training sessions (Los Angeles and San Francisco) to start building a strong and committed core of Client Advocate Volunteers.

Since we launched our website in May, we have become a virtual clearinghouse on Medical Aid in Dying (MAID) in California.  The initial ramp-up phase has manifested a steadily growing stream of phone calls and email requests for information from the general public as well as health care professionals.

To date, 38 individuals and their families throughout the state became our clients seeking MAID, 12 have died at the time and place of their choosing using a MAID prescription, and several other clients are in the process of concluding the 15-day waiting period and planning to ingest.  We have been honored to be a supportive presence at the majority of these planned deaths.  

Our volunteers have also given 28 community-based presentations, participated in a groundbreaking End of Life Symposium organized by LA’s City of Hope Cancer Center in Duarte CA, and provided seven in-services for hospices and their physicians in the San Diego, Los Angeles and San Francisco Bay areas.  We have discovered ten more physicians who are willing and have prescribed MAID whom we can now connect to clients who are having trouble finding a participating physician. We have also published 27 blogs and thought pieces and garnered more than 250 followers. And, the list continues to grow.   

Whew!  All that said, our vision for 2020 remains steadfastly the same. It is our intention to continue providing all programs and services on a volunteer basis and at no charge so they are accessible to anyone who wants or needs them. Our hope is that this year we will gain the ability to hire a Program Coordinator to support to our Client Advocate Volunteer program and our Management Team. This will ensure we can keep things running smoothly as we continue to grow.    

We hope you can continue to support us with good thoughts, cheering from the sidelines, and financial support if you are able.  This will enable us to launch our next phase of growth so that EOLCCA can reach out to and educate more Californians about all legal end of life options including the California End of Life Option Act.

All the best to you and yours for a peaceful and deeply satisfying 2020.

End of Life Choices California offers information and non-judgemental personal support to anyone seeking help managing end-of-life care planning or decision-making in California.  Please visit www.endoflifechoicesca.org to answer a variety of questions.  To speak with one of our volunteers, please call 760-636-8009.  All our services are free of charge.

If you would like to support the mission of End of Life Choices California,
please click below and learn more about our funding needs.
Thank you!

Giving Thanks

The dictionary describes the word ‘thanksgiving’ as follows:

“the act of giving thanks; grateful acknowledgment of  

benefits or favors…..an expression of thanks….”

Each of us always looks forward to Thanksgiving, and loves spending hours with family gathered around the dinner table.  We also try to find time to sit quietly and think about all the things important to us for which we are grateful.  We try to do this on a regular basis anyway, but find Thanksgiving to be an especially poignant time to do this again.

We want to share with you a story that makes us especially grateful for the End of Life Option Act and for all those who played a role in making medical aid in dying a reality here in California.

Recently, as a Client Advocate Volunteer for End of Life Choices California (EOLCCA), Judy was invited to be present at the death of one of our clients. She was a woman in her early 50’s with end-stage ovarian cancer – whom we will call Sharon to protect her identity. Sharon lived with her illness for almost five years. But it took a turn for the worse this summer, metastasized rapidly and could no longer be remediated.  She knew she was dying and her pain had become unbearable.  She chose to access life-ending medication through the End of Life Option Act in California so that she could control the time and place of her death, and die peacefully with her loved ones around her.

Here, at End of Life Choices California,

We are thankful for the thousands of donors and activists who lobbied so passionately, the compassionate California legislators who proposed and ultimately passed, and Governor Jerry Brown who signed the California End of Life Option Act into law.

We are thankful that Sharon’s compassionate oncologist and physicians understood her situation and were willing to prescribe life-ending medication that she could have available should her suffering become unbearable.

We are thankfulthat Sharon’s family was able to contact EOLCCA and ask us to help them navigate the process and be present if she ultimately decided to ingest the medication.

We are thankful to our donors that EOLCCA could provide a knowledgeable volunteer to be there to support Sharon and her family.

The day she chose to ingest the medication, Sharon was in her own bed, surrounded by her three grown children, her sister, and her sweetheart. They sang to her, prayed with her, told her they loved her.  After she had taken the medication and fell into a deep sleep with her service dog faithfully by her side, she died peacefully as her family continued to sing to her and tell her how much they loved her.

We are thankful that Sharon and her family were afforded this serene and humane opportunity to say their goodbyes. What a gift for her and for them.

We are thankful every day for the financial support from EOLCCA’s donors that enables us to provide support and reassurance to people like Sharon and her family during such a vulnerable time.

To continue our vital work, and help others like Sharon and her family,
we are counting on your generous support.

GivingTuesday is taking place just after Thanksgiving on December 3.  We hope you will ensure that EOLCCA volunteers can help others like Sharon by making a donation to support our work here on that special day.  Thank you!

Best wishes for a Thanksgiving holiday filled with all the people and things for which you give thanks.

With gratitude,

Judy, Karen, Claudia & Lynne

End of Life Choices California offers information and non-judgmental personal support to anyone seeking help managing end-of-life care planning or decision-making in California.  Please visit www.endoflifechoicesca.org.  To speak with one of our volunteers, please call 760-636-8009 or email us at info@endoflifechoicesca.org.  All our services are free of charge.

If you would like to support the mission of
End of Life Choices California,
please click below and learn more about
our funding needs.   
Thank you!

Physician-Assisted Suicide…. Not!

  1. Every day my Google Alerts send me interesting articles about death and dying.  Some I read, some I pass by, but this one caught my eye. A medical student wrote a piece about the medical practice of “physician-assisted suicide” as a collaborative process.  While he said some interesting and powerful things, I was deeply compelled to provide information to him, and to his readers on kevinmd.com that the term “physician-assisted suicide” is incorrect. 

The following is my response to his article:

“I applaud Mr. La, an aspiring medical professional, for shining a light on medical aid in dying (MAID) in his recent article “Physician Assisted Suicide is a Collaborative Process”.  As he points out, MAID is becoming more available as states are increasingly legalizing the process. It is, in fact, a growing movement in our country that offers a humane and dignified death to those people in permissive states who are terminally ill, suffering, and wish to have a say in how they die. However, having attended many deaths as a volunteer with End of Life Choices California, and as a retired physician, I can attest that these individuals are clearly not suicidal, which we know to be a mental health issue where someone is choosing to die who could otherwise live. These brave people who choose medical aid in dying would give anything to keep living, but a debilitating, painful and terminal disease is taking their lives. They are simply choosing to end that life in a quiet and peaceful way, usually at home, surrounded by loved ones.  

Mr. La’s unfortunate use of “physician-assisted suicide” is outdated verbiage that is primarily used by people who are opposed to MAID.  However, I do not believe that he is taking a stance in opposition to MAID in his article nor condoning the practice as suicide. The laws that have been passed in each state are all very clear on this very issue.

For example, in my home state of California, the End of Life Option Act, Assembly Bill 15, is very clear that medical aid in dying is NOT suicide, euthanasia or any other term that blames the patient.  Medical aid in dying is a determined and seriously considered choice, with significant steps and oversight which must be applied to keep the law from being abused. The bill states that “nothing in its provisions is to be construed to authorize ending a patient’s life by lethal injection, mercy killing, or active euthanasia, and would provide that, action taken in accordance with the act shall not constitute, among other things, suicide or homicide.”

Another critical point to note is that pursuant to Section 443.18 of the bill, “death resulting from the self-administration of an aid-in-dying drug is not suicide, and therefore health and insurance coverage shall not be exempted on that basis.” Section 443.18 goes on to say “Nothing in this part may be construed to authorize a physician or any other person to end an individual’s life by lethal injection, mercy killing, or active euthanasia. Actions taken in accordance with this part shall not, for any purposes, constitute suicide, assisted suicide, homicide, or elder abuse under the law.”

If interested, one can read the specifics of the law here.

It is our hope, as a California nonprofit committed to providing information and personal support to people seeking answers at the end of their lives, that physicians will continue to educate themselves and become more willing to provide this important medical service to their patients at one of the most significant times of their lives. I believe it is the ultimate in patient abandonment not to do so.  If you are a physician wishing to learn more about MAID, please contact us at info@endoflifechoicesca.org and we will put you in contact with physicians who do prescribe MAID and would be happy to share their experience. 

Dr. Judy Neall Epstein
Founding Director, President
End of Life Choices California

                                                                                                      —

End of Life Choices California offers information and non-judgemental personal support to anyone seeking help managing end-of-life care planning or decision-making in California.  Please visit www.endoflifechoicesca.org.  To speak with one of our volunteers, please call 760-636-8009 or email us at info@endoflifechoicesca.org.  All our services are free of charge.

If you would like to support the mission of
End of Life Choices California,
please click below and learn more about
our funding needs.   
Thank you!

Grateful

Reading about New Mexico the other day, I was moved to deep gratitude that California found the wisdom and courage to enact an aid in dying law so its terminally ill citizens may have a peaceful death if that is their choice.

In this Albuquerque Journal editorial it is heartbreaking to see that two amazing people stepped forward, while suffering from their terminal diseases, to speak out for medical aid in dying. 

Bill Johnson, diagnosed with ALS, was not only a Roman Catholic (I only mention this because the Catholic Church unequivocally opposes medical aid in dying) but he was a former CEO of University of New Mexico Hospital and a former secretary of the state Human Services Department.  Quite a history for someone fighting for the right to end his life on his own terms with medical aid in dying.  

They died, but not on their own terms.

The other individual,  Elizabeth Whitefield, the 2nd Judicial District judge for whom an aid-in-dying bill was named but did NOT pass in New Mexico this spring, died last year.  Whitefield battled multiple cancers over many years. She rebounded time and again but knew chances were great she would succumb to cancer in the end, so she lobbied legislators to support compassionate end-of-life legislation in 2017.  She died, like Johnson, on lawmakers’ terms, not her own.

Don’t lose  hope.

I hope New Mexicans do not lose hope because of this loss, along with all the other states trying to pass medical aid in dying laws.  What I hear people who are opposed to medical aid in dying say is that they fear a slippery slope: that sick children, elderly people with no family, or the disabled with expensive medical needs will be “euthanized”.  But these fears are ludicrous and not based on any factual information. One can look to Oregon state to see that in 25 years with the Death with Dignity law this has never occurred. Euthanasia is not legal in the United States, and these state laws have very strict guidelines to prevent exactly this kind of abuse.  

I am grateful to have a choice.

What has happened however, not only in Oregon, but in California, Washington,  Montana, Colorado, Vermont, the District of Columbia, Hawaii, New Jersey and Maine is that people who are struggling with a terminal disease now HAVE THE CHOICE to determine how and when they will die.  No one is required to seek medical aid in dying if it does not reflect their own ethics, values or religious beliefs. The whole idea behind medical aid in dying legislation is to give people more humane choice at the end of life.  And I, for one, am grateful that were I facing a terminal or debilitating disease with a known trajectory of pain and suffering, this choice is available to me should I wish it as a citizen of California. 

As our esteemed former California Governor Jerry Brown stated when he signed the End of Life Option Act, 

“In the end, I was left to reflect on what I would want in the face of my own death. I do not know what I would do if I were dying in prolonged and excruciating pain. I am certain, however, that it would be a comfort to be able to consider the options afforded by this bill. And I wouldn’t deny that right to others.”

Thank you, Governor Brown. 

If you or someone you know is facing a serious or terminal illness and would like to discuss end of life options, or discuss Advance Care Planning, please contact EOLCCA. We have compassionate, educated volunteers who will talk with you and answer your questions.    

End of Life Choices California offers information and non-judgemental personal support to anyone seeking help managing end-of-life care planning or decision-making in California.  Please visit www.endoflifechoicesca.org.  To speak with one of our volunteers, please call 760-636-8009 or email us at info@endoflifechoicesca.org.  All our services are free of charge.

If you would like to support the mission of End of Life Choices California,
please click below and learn more about our funding needs.
Thank you!

When the Burdens of Living Outweigh the Benefits

When I read The Washington Post article’s title, “At 94, she was ready to die by fasting,” I thought “Oh no!”  Upon further reading, I learned that Rosemary Bowen did not actually fast, which by definition is stopping all nutritional intake, but rather, she voluntarily stopped eating and drinking, also known as VSED, to achieve her death.  That made absolute sense to me.

There is no law that says you have to eat and drink.

VSED has been discussed for decades within the right-to-die movement.  It is a legal option for anyone, anywhere. There is no law that states you have to eat and drink and on the flip side, no law states that you can’t stop eating and drinking if and when you are ready and have appropriate support.  In fact, in states that have adopted Medical Aid in Dying, there are many people who don’t qualify for the law with a terminal illness, thus VSED is a viable option for them to consider. It also continues to be an option for people in states without such a law, should they come to that very personal conclusion that the burden of living has become greater than its benefits.  

I thought Rosemary Bowen’s was a perfect example of a graceful death through VSED.  I’m glad her daughter found it in her heart to support her mother’s choice, to film her, and then publish it in order to share her mother’s experience.  As a society, we need more opportunities to talk about death and where possible, how one chooses to die.

Understanding VSED

Unfortunately, Voluntary Stopping Eating and Drinking is often misunderstood.  One thing we know for sure, which gives me comfort, is that this is a natural process in the animal kingdom and in some cultures.  When it becomes apparent that an individual can no longer participate with the pack, they go off quietly by themselves to die by stopping food and water.  Knowing that this has occurred naturally for millenia makes the choice easier to understand. 

I recently spoke with an elderly and ill gentleman who had reached the conclusion that he was ready to die. He had stopped eating a month ago. He had lost quite a bit of weight and was angry that he was still alive.  When I suggested he consider stopping all fluids as well, based on my understanding of VSED, he expressed fear that it would be painful. While he was not taking in any food at all, he stated he was finding comfort in drinking water.  I explained to him the physiology of stopping both food and water: that the body could last for a very long time with no food (with that length of time being dependent on the amount of fat and muscle mass available to make energy) but with fluids stopped, the body would go into a severe dehydration state which would cause kidney failure and lead to cardiac failure in a matter of days to a couple of weeks.

Is VSED painful?

People worry that it will be uncomfortable and painful.  And, in my experience of seeing people go through this process many times, it can be somewhat uncomfortable.  Knowing that, we always recommend that individuals choosing VSED engage Hospice as soon as possible and also have supportive family and/or friends present 24/7 once they start the process.  Hospice will provide comfort measures with oral mouth care and ways of administering palliative medication other than orally, so no fluids are necessary to take pills.  The Washington Postarticle discusses this.  

This way of leaving the world is not for everyone. It takes a great deal of conviction and fortitude.  One must be absolutely certain this is what he/she wants to do.  The discomfort of thirst is strongest in the first three days, I’ve noticed. Then the person moves into a more dream-like state and the discomfort becomes secondary. Again, hospice support with body care and soothing medication is essential.  NO ONE SHOULD EVER DO THIS ALONE. People alone and on their own have gotten up and fallen due to weakness, and often ended up in the hospital with a fracture and on IV fluids, thus VSED could not be completed. It is imperative to have adequate support.

EOLCCA’s volunteers are trained to know how to walk people through the steps of preparing for VSED and accomplishing it successfully.  We are available to talk with anyone who is interested in exploring the option. Lastly, if you would like more information about VSED from a scholarly perspective, visit our website’s Resources page here.

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End of Life Choices Californiaoffers information and non-judgemental personal support to anyone seeking help managing end-of-life care planning or decision-making in California.  Please visitwww.endoflifechoicesca.org to answer a variety of questions.  To speak with one of our volunteers, please call 760-636-8009.  All our services are free of charge.

If you would like to support the mission of End of Life Choices California,
please click below and learn more about our funding needs.
Thank you!