Alternate Endings

ALTERNATE ENDINGS released in August 2019 is a touching HBO film that depicts new and innovative ways to end or memorialize one’s life.  My husband and I watched it last night and it is a worthy watch. It is tender and informative and we enjoyed it.  

The film opens with coverage of the National Funeral Directors’ conference, considered by some to be the single largest conference in the country.  Many different booths were visited offering a variety of ideas about all aspects of end-of-life care. One of the interviewees stated that there is a dramatic change in burial and memorialization in our country, and I couldn’t agree more.  For instance, it was stated that for the first time ever, in 2018, more people chose cremation over traditional burial.

Taking Control

In one of my recent blog posts, I noted that there are now approximately 218 natural green-burial parks in the US, up from just 100 five years ago! Not only are more people embracing the possibility of having more control over the way they die, they are also taking control over what happens to their remains after they die.

The film goes on to highlight six specific situations in detail: 

  • Memorial Reef International mixes a person’s cremains into a concrete shell for placement in the ocean, helping restore the natural ecosystem of the reef.
  • A Living Wake, in which a large family throws a party for their elderly, dying father to make sure that “the guy who’s leaving knows he’s loved.”
  • Back to Nature Burials in Austin, Texas depicts a woman dying of pancreatic cancer who chooses her burial site in a green burial park.  After she dies, her friends and family lovingly prepare her body for burial and then have a beautiful ceremony for her to place her remains in the park.
  • Blast-Off Space Burials in New Mexico is an innovative project where families can put a portion of their loved ones’ cremains on a rocket headed out to space.
  • Medical Aid in Dying depicts a gentleman in Grass Valley, CA working with his physician to obtain life-ending medication through California’s End of Life Option Act.  He beautifully articulates his thinking for choosing this option, and we see him and his family planning the day. Then, with his family at his side, taking the medication and dying peacefully.
  • Celebration of Life is a heart-rending story about a terminally-ill 5 year old boy’s wish to have a celebration of life after he dies instead of a more somber, traditional funeral.  His parents lovingly organized a memorable celebration of his life for family and friends just the way he had wanted.

What Is Important To You?

I watched this movie twice, once by myself, and once with my husband. It brought tears to my eyes both times, and tears to my husband’s eyes.  It is a moving and thought-provoking movie. I highly recommend it as a way to begin your own thinking process about what is important to you at life’s end. 

Better yet, share it with a family member to start those all-important conversations. And then, when you are ready to complete your own advance directive, you will find a wealth of information, and even the state forms you need, on our website under Advance Care Planning.   If you prefer, call us.  One of our volunteers will be happy to walk you through the forms and answer any questions you may have.

End of Life Choices California is committed to helping people find their way through the important process of end of life planning.

~~~

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!

How Not To Die In The ER

This extraordinary piece we share with you today is a thoughtful and moving example of just what it takes to get well-meaning medical providers to pay attention to what we (the patients) want, not what they think we need.  The story is a hard but valuable lesson about the importance of both knowing and communicating your end of life wishes.  It is told with grace, strength, clarity and love.

 Originally published March 12, 2019 and reprinted with permission

by Fran Moreland Johns

“I promise,” I said, “that I will not let them admit you; we’ll come back home today.”

My husband, who had lived with congestive heart failure for decades, was so filled with fluids that he was like a walking (sitting; he was wheelchair-bound) waterbed. This was a Monday. I am not medically competent, but I’ve been a hospice, AIDS/HIV and Compassion & Choices volunteer, and I knew enough to know he was sliding toward end-stage CHF.

In the ER I mentioned to assorted intake people that we would not agree to hospitalization. The physician who eventually arrived looked my husband in the eye and outlined the ways she could help him feel better and perhaps live longer (he was 89.) “But it will involve being in the hospital for a few days,” she said; “and I think that is not what you want.”

“That is not what I want,” said my husband, looking her in the eye.

“Fine,” said this saintly, beautiful doctor (name on request; I’ve already sent her a thank-you letter copying everyone I can think of.) “We will do what we can, and send you home today.”Martini

So we went home. It was a long day, and my husband was too weary even to finish his martini (an indication to me that he really didn’t feel well. The nightly martini was important.) He said he didn’t want even a bowl of soup. Bed sounded good, he said, but he was beyond cooperation. I then had to summon the Wellness people in our retirement condo building to help.

“Old person. Unresponsive. Call 911” said the Wellness people, as they helped me get him into bed.

“Do not call 911,” I said.

“We understand,” they said. “We love him too. But we have to call 911.”

The paramedics arrived. Paramedics are invariably the most gorgeous hunks. Two of the six who arrived had been to our apartment months before when my husband landed on the floor – he was 6’4” (at his peak) so it took paramedics to get him from floor to bed. “I remember talking to him about all this art,” one said. “And he was a Marine,” said the other. What’s not to love about paramedics? But. “We must take him to the ER,” they said.

“You may not take him out of this apartment,” said I.

It became an interesting battle.

“We understand,” they said. “We agree with you, ma’am. But we have protocols.”

Finally I said to the guy in charge: “You call your head person at San Francisco General and tell him you have this little old lady standing here with her husband’s DNR, POLST form and DPOA and she says we may not remove him from their apartment.” Actually, I was prepared to go over that person’s head. I have friends at SF General. But to his eternal credit, the in-charge physician  (may he survive and prosper) said, “Fine. Get him in bed and leave him there.”

Fran & Bud 5.28.18

 

 

 

The two of us

One of the paramedics saluted my husband as he left the bedroom.

My husband died three days later, in his own home where he wanted to be, with me scrinched into the hospital bed hugging him into the hereafter.

Had I not argued against the retirement home 911 protocols, and fought against the EMR protocols, he would have died in a cold, bright-lit hospital room with strangers poking and probing him and we the taxpayers spending thousands and thousands of dollars to make his last several days miserable.

What’s wrong with this picture? Only the caption.

The caption 99% of us would want is the one below the snapshot of my husband’s death, at home, with someone we love best hugging us into the hereafter.

Fully 60 percent of the U.S. population get the hospital caption — the one that goes with that blurry photo above — instead . (Another 20 percent get the nursing home caption.) One should not have to have a ferocious on-site advocate to let one die at home in one’s own bed. In addition to the DNR, the POLST and the DPOA there should be a JLMA form: Just Leave Me Alone, for those of us who concede that we’re actually going to die some day and work to keep our end-times as inexpensive and comfortable as possible.Heart

Until such time, I am grateful for the forms we do have, and for the two compassionate physicians who helped my good husband die the death he preferred. May he rest in well-earned peace.

 

 

~~~

Fran Moreland Johns, an accomplished and prolific writer, 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 and activism in that field that included serving on the board of Compassion & Choices of Northern California and the San Francisco Bay Area Network for End of Life Care.  She has recently signed on as a volunteer with End of Life Choices California, and is currently helping to publicize our services throughout Northern California. 

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!

Going online shopping this weekend?

A New and SUPER Easy Way to Contribute to our Important Work! 

Hello Friends,

We know how many requests for financial support come through your inbox for nonprofits and political causes; especially with the upcoming elections.

As a small nonprofit dedicated to improving how people die in California we  also count on your financial contributions to help us stay afloat.

While we will always appreciate and accept any donation you make to us: year-end, or otherwise, we’d like to share another way you can make small contributions EVERY TIME YOU PURCHASE SOMETHING ON AMAZON!  And doesn’t everyone use Amazon at least once in a while?

It’s very easy. Just follow this link to AmazonSmile and underneath the browser window you’ll see it says “supporting”.  You simply search for End of Life Choices California, and click save to make us your charity.

The trick is, be sure that every time you shop at Amazon, you go through this link in order for us to receive the donation of 0.5% of the amount of your purchase.  Only purchases made via smile.amazon.com, (not www.amazon.com or the mobile app) generate AmazonSmile donations.

We hope you’ll find it in your heart and in your wallet to help us in this small way from now on.  We appreciate every dollar generated.   Thank you!

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!

That Good Night: Life and Medicine in the Eleventh Hour

 

In the last several years, there have been many wonderful books about how we navigate dying.  This interest coincides with a movement toward questioning the current use of technology up against an individual’s desire to have some control at the end of life.  We are needing to slow down and listen to what people want. We are needing to rethink the idea that everyone wants everything modern medicine has to offer. This new territory is Palliative Medicine, a medical specialty at the intersection of medical interventions and end of life care

What is palliative care?

What is palliative care?  As defined by the Center to Advance Palliative Care, it is specialized medical care for people with serious illness, focused on providing relief from the symptoms and stress of a serious illness.  The goal is to improve quality of life for both the patient and the family. It is appropriate at any age and at any stage in a serious illness. It is an important and evolving concept but still is not routinely available or routinely offered to patients.  

That Good Night: Life and Medicine in the Eleventh Hour describes how we step into this intersection gracefully.  The author, Dr. Sunita Puri, is an assistant professor of clinical medicine at the University of Southern California and the medical director of palliative medicine at Keck Hospital and the Norris Comprehensive Cancer Center in Los Angeles.  This book is the story of Dr. Puri’s journey to palliative medicine; she takes us along.   

Often patients have never heard of palliative care….

As a young physician, Dr. Puri struggled to find the right words about end of life conversations and had to learn at the bedside.  We are in the room as she speaks to patients. “You are forced to a place of extreme intimacy, talking to them about the lives they have led up to this point, their fears and regrets, the people they love, the ways they have made sense of loss earlier in their lives, and how they are making sense of loss now.  You remind yourself to listen carefully and to choose your words carefully.”  Often patients have never heard of palliative care and they consider hospice care as giving up.  They carry loss, grief, anger, fear, sadness, regret. These strong emotions can make us want to leave the room.  “It isn’t your job to erase or justify all of their suffering, but rather to see it, not ignore it.  To ease it when you can. And to be there as they move through it…”

“Your patients are showing you that dying is still living.”

We travel with Dr. Puri from the hospital to the clinic to home visits.  About home visits she says: “Dying hasn’t bestowed upon them the meaning of life or turned them into embodiments of enlightenment; dying is simply a continuation of living this messy, temporary life, humanly and imperfectly.”  She laments the failures of home care.  Why will the healthcare system pay for last ditch chemotherapy or dialysis for a dying patient but not for one trained caregiver to help them remain comfortable at home?  She witnesses the wisdom and dignity and strength patients exhibit as they make peace with life as part of the dying process.  She tells herself: “Your patients are showing you that dying is still living.”

 

She weaves throughout her book stories about her Indian immigrant parents and especially the strong influence of her mother, an anesthesiologist who managed to raise two children in a stable, very spiritual Hindu home in Los Angeles.  As a result, Dr. Puri is not afraid to talk about God and the soul with patients.  She expresses a view of death as a spiritual, sacred passage, not a medical failure. She asks: “What if we regarded death with reverence instead of fear? What if we could learn to appreciate what we have now, in the midst of life, knowing that it is all a temporary gift?  What if doctors realized that they cannot fix everything, but only slow down rather than cure most chronic illnesses? What if doctors learned how to identify and talk about suffering and dignity while still in medical school?  What if they learned how to discuss medicine’s offerings and its limits?”

 

Conversations around palliative care are where we can come to rest between technology and our desire for peaceful death.  When doctors can improve at approaching their patients with vulnerability, honesty, trust and compassion, it will be possible for us to conduct our end of life time, and die as we choose, with dignity, without suffering.  This is the gift that palliative care has to offer.  It brings humanity back into medical care.  Dr. Puri has given us the instruction as well the courage to use our words wisely. Our words and actions around end of life care are at the heart of the revolution that is taking place.

 

#

At End of Life Choices California, we have trained volunteers available to provide information and personal support about all end of life options, advance care planning, palliative and hospice care, and California’s End of Life Option Act.  For more information about our services, please browse our website or contact us.

Judith Schnack, MSN, RN, FNP is a Client Advocate Volunteer with End of Life Choices California

 

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!

A Return To Nature

 

I recently read this article, which appeared in my Inbox. I was pleasantly surprised by all the information it contained about green burial.  This issue has not been part of my decade-long work in death and dying. However, I have known others who are studying and promoting a conscientious end after dying, and it is important work.  

 

“Return To Nature” explains a lot.  It is a very interesting read and yes! Magazine is hip to what’s going on: their tagline is Journalism for People Building a Better World.  

 

Natural Burial

 

One sentence in particular got my attention:  “Whether next to a regular cemetery or on conserved land, there are now around 218 natural burial grounds in the U.S. , up from around 100 just five years ago.”  This statement is amazing to me.  That is more than DOUBLE the number of natural burial grounds in only five years! 

 

Not only are people becoming more interested in natural burial, it is my observation that people in general are becoming more open about and interested in discussing death and dying.  I meet people now, who are becoming trained as death doulas; a calling rarely heard of prior to the last 3 or 4 years.  I’m continually in awe of the growing awareness, interest, questioning and validation of discussion and decision-making around end of life planning and care.  Finally! Thank goodness.  

 

Perceptions have begun to change. 

 

And I think they will continue to change as the large cohort of baby boomers reaches a point in life where these issues arise for them personally, and more frequently.  It is gratifying to see a growing and more transgenerational movement addressing the important need for more openly discussing death and dying, improving end-of-life care and supporting meaningful choices at the end of life.
 

End of Life Choices California is pleased to be participating in a number of conferences coming up in the state over the next 6 months that reflect this growing trend: the City of Hope End of Life Symposium in Duarte on September 27,  ReImagine End of Life San Francisco from October 24-November 3, and the Beautiful Dying Expo in San Diego on November 2.  And a variety of public and professional educational events ranging from from health fairs and small workshops, to hospice in-services are requesting our participation and discussion of end-of-life options in California.  We are also looking forward to participating in and presenting at the very first National Clinicians Conference on Medical Aid in Dying in Berkeley, February 14-15, 2020.  I hope to see you at one or more of these groundbreaking gatherings.  

 

 

In the meantime, every day, EOLCCA gathers new information about compassionate physicians, hospices and other HCPs who are working with terminally ill  individuals seeking medical aid in dying under California’s End of Life Option Act.  If you have had a supportive experience, please share it with us, so that we will have more information to help the next person who calls us.  If you are a physician wishing to learn from a fellow physician’s experience with the EOLOA in California, we can put you in touch with physicians who would be very pleased to share their insights and offer guidance. 

~~~

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.  We have a resource-rich website www.endoflifechoicesca.org to answer a variety of questions.  However, if you prefer to speak with one of our trained client advocate volunteers, please give us a call at 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!

Finish Strong: Book Review

Several months ago, I had the good fortune to hear Barbara Coombs Lee speak about her new book, Finish Strong: Putting Your Priorities First at Life’s End. Barbara, a former nurse, physician assistant, and now an attorney, is the president of Compassion & Choices.  C&C is a national organization whose focus is to empower consumers to chart their own course at life’s end through education and legislation, and helping states to pass medical aid in dying laws.  Having been a nurse myself for more than 50 years, I value her knowledge and expertise; she writes from an informed perspective.

Barbara begins by stating that “the most essential thing a person can do to achieve a gentle departure is simply and bravely to think and talk about it ahead of time.”  She urges us as consumers to ask questions and require candor from our physicians about treatment. We need to speak clearly with our families and/or surrogates about our priorities.  We need to complete appropriate documents including advanced directives and if appropriate, a POLST (Physician’s Order for Life Sustaining Treatment), both of which spell out our wishes for end-of-life care.

Let Me Die Like a Doctor

One chapter that got my attention is called “Let Me Die Like a Doctor.”  What does that mean? She explains that “They agree to fewer invasive or aggressive treatments.  They choose palliative treatments and suffer less. They don’t, themselves, plan to submit to the low-yield and exhaustive gauntlet of tests and interventions that they impose on their dying patients.”  Doctors know that death is inevitable; effort can be directed into remaining healthy and also into preparing to die well. All treatment plans will eventually “fail.” They know when to turn away from futile therapies and focus on love, beauty, faith—whatever is most important to them.  Finally, only the dying person can make these choices.

Make a Video

She goes on to describe the benefits of hospice care and offers considerable direction about handling end-of-life care when facing a diagnosis of dementia.  She states that someone with dementia needs a strong advanced directive, the choice to decline life-sustaining medical treatments, and the ability to decline food and water.  She gives explicit instructions about creating a video to supplement the advanced directive when the person has the mental capacity to make their own choices. The video is a personal message about wishes and choices, having an immediate and authentic tone stronger than any signed and witnessed form.  It is likely to be most useful to the healthcare proxy and to loved ones.

Consumers Can Change the System

Barbara concludes by noting that slowly advancing illness is the most common situation that we will encounter in our own lives.  This “requires adjusting our attitudes and expectations of the healthcare system and turning the system to our own needs. The system cannot change the system.  Only consumers can change the system.” You and me. We need to ask questions, make careful decisions and put our values and priorities first when time is running out.  We and our loved ones will change the system.  We need to reclaim authority over our lives as we age and decline, with an ending that reflects and upholds the values we cherish and the beliefs we hold.  “Let us finish as strong as we’ve lived.”  

I found this to be an excellent read and a great resource for anyone interested in having more than just a passing say over how they wish to die.  This book gives you, the informed consumer, all the information you need to figure out what you want and then put your plans in concrete form in order to actually have those plans actualize.  Thank you, Barbara!

At End of Life Choices California, we are committed to putting much of the information Barbara discusses in her book into the hands of Californians; the terminally ill, their families, and those who are interested in planning ahead. We have trained volunteers available to provide information and personal support about all end of life options, advance care planning, and California’s End of Life Option Act.  For more information about our services, please browse our website or contact us.

Judith Schnack, MSN, RN, FNP is a Client Advocate Volunteer with End of Life Choices California

 

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!

Barriers to Medical Aid in Dying even when it is legal

A recent story about the firing of Dr. Barbara Morris, a courageous geriatric physician in Colorado who went to court to fight for the right of her patient to use the state’s medical aid-in-dying law, is yet another warning for those of us in California and other states who are working hard to lift the barriers to compassionate and timely access to medical aid in dying (MAID) for the terminally ill.

This latest incident, involving a physician who independently chose to prescribe medical aid-in-dying for her patient and as a result was fired from her job with a jointly run Catholic/Seventh-day Adventist hospital system opposed to MAID, is as unfortunate as what recently occurred in New Jersey where a single Orthodox Jewish physician had the power to temporarily stop the law from going into effect because of his personal faith-based beliefs.  

We have no wish to comment on religious preferences or practices, however, we believe that such barriers to health care do not belong in a democratic and compassionate society such as ours.  New Jersey Assemblyman John Burzichelli, one of the law’s sponsors, speaks directly to our concern when he says: “I have my beliefs, you have your beliefs, but don’t use the machinery of government to impose them on others.”    

 

Enough barriers are already built into the system.

 

The physical and emotional barriers most terminally ill individuals face in accessing medical-aid in-dying in California and other states that have adopted a law are already burdensome enough: family members opposed due to their own beliefs; physicians who have often been treating the patient for years and refuse to prescribe based on their own beliefs; hospices, social workers and health care providers opposed to MAID that won’t even inform a patient of their right to request the medication nor give the patient a referral to a health care provider who is willing to prescribe as stipulated in the law.  Moreover, the process to request MAID in California is lengthy and daunting, including a wait time of a minimum 15 days, which every individual, sick and debilitated as he/she is, must go through who wishes to ease their end-stage suffering with medical aid-in-dying. Oregon just wisely corrected this stipulation and those who are very near death can now access the law in a shorter period of time.

 

Are you a compassionate physician?

 

End of Life Choices California was founded on a belief system and mission: to enable those who face end of life situations to have access to ALL the information available and a support-system to make informed decisions about how they wish to die, including the option of medical aid-in-dying.  

We continue to search for more physicians throughout California to whom terminally-ill individuals can turn for compassionate care, understanding, and support of whatever end of life option they choose, including medical aid-in-dying if they qualify under the law.

If you are one of those compassionate physicians or a medical provider of any kind, we would love to know about you so that as we get calls and emails from people who need help accessing the California End of Life Option Act we can reach out to you and see if our client would be an appropriate referral.  In addition, if any of you, our readers, have had a positive experience with a doctor or hospice about end-of-life choice, and would like to share your story with us, we would be very grateful to hear from you. Ways to contact EOLCCA.  Thank you!

When You Don’t Have Access to Medical Aid in Dying…

As of Tuesday, August 27, an appeals court in New Jersey overturned the restraining order mentioned in this post, which halted New Jersey’s “Aid in Dying” law, now making it lawful for terminally ill individuals to request a prescription from their physician to end their lives.  This is great news!

This post, originally written with New Jersey’s law still in limbo, presents pertinent information regarding another end-of-life option for a peaceful death, should medical aid in dying either not be available or the 15-day wait process not be realistic.  

This news story was posted on August 23, 2019 and is a very sad, but important, read.  It explains why having access to life-ending medication for an individual with a terminal disease needs to be a viable, accessible option for all decisionally capable adults.  It is so sad that this woman in New Jersey, where a death with dignity law was just passed, cannot fulfill her wish to obtain the medication promised to her by her physician, in accordance with the new law, because one person is contesting the law and it is now “on hold” until it goes through the legal process.  

I wish End of Life Choices California could reach across the country and help her.  Perhaps this blog will find it’s way to her and her husband.  Because the truth is, there is more than one way to achieve a lawful, peaceful death in the face of an agonizing and incurable illness.  If Katie were in California and called us, one of our trained volunteers would meet with her and her husband to discuss her situation and all legal end-of-life-options.  We would explain that without medical aid in dying available, she might want to know more about using Voluntarily Stopping Eating and Drinking (VSED) as an option. Many people shrink back from this idea often because of a misunderstanding about the actual process and what it entails, even though it can result in a peaceful death.

Voluntarily stopping eating and drinking is the legal right of any person anywhere. There is no law that states you have to eat and drink fluids to stay alive.  That being said, it is absolutely NOT for everyone. And the best scenario of its use is for those unfortunate people who have arrived at a place in their lives where they find that the burdens of living with a terminal or painful disease far outweigh the benefits of living: when they have lost all control over their life, are suffering from intractable pain and know there is no hope of recovery.  

 It takes a strong and dedicated decision by an adult to choose to stop ALL food and ALL fluids.  It is not starving oneself to death. It is stopping all forms of nourishment, including water and other fluids, that pushes the body into a dehydrated state that leads to the kidneys shutting down and results in a coma and death.  Depending on the strength of the person and the strength of their heart, it can take from five days to three weeks. Some people have described an almost euphoric state in going through this process. In a person weakened by disease, basically bed-bound and already at a much lower weight than is usual for them due to their  illness, it is a shorter rather than longer process. But they have to be determined through the early symptoms of hunger and thirst which eventually pass.

At End of Life Choices California, when supporting a person choosing VSED, we always suggest the person and their caregiving team have their physician on board to prescribe hospice care for them if they are not already on hospice.  A person pursuing VSED can benefit from medical support with gentle anti-anxiety medication and other clinical practices to ease their symptoms, and hospice nurses are excellent in providing oral care to alleviate dry mouth and lips.  A simple swab of coconut or some other oil does the trick. Quiet favorite music, aromatherapy, massage and careful medical support all can contribute to achieving a peaceful death. 

Even though the California End of Life Option Act has made medical aid in dying available to terminally ill, decisionally capable adults, not all those individuals who wish to obtain it will be able to or they may run out of time trying to find doctors who will participate in their medical wishes.  At End of Life Choices California, we discuss all end-of-life options with our clients, as well as support them in their effort to access medical aid in dying or VSED even when the barriers seem overwhelming. We provide factual information and personal support.  You can find many resources and learn more about our services on our website.  If you are interested in learning more about VSED, feel free to give us a call, or go to this page on our website and read more.

In the Middle of a Revolution on Death

The Revolution is upon us

The recent Washington Post article, “We’re in the middle of a revolution on death” is gently thought-provoking and describes a trend that we hope will become the reality for more Californians.  Specifically, those who are facing terminal illness and wish to spend their last days not in an induced coma, in agony tethered to life support in a hospital, or suffering excessive medical intervention and expecting a miracle. Instead, these patients are offered the option to die in their own home with access to medical aid-in-dying and surrounded by loved ones.  In California, the good news is that medical aid-in-dying became available to the terminally ill via the End of Life Option Act in June of 2016. However, the reality is that many of those who might choose to access this law have neither the information nor the support they would need to obtain the prescription when it could make the most difference.

“Don’t tell me what I have to do.”

As Dick Shannon, the subject of the new HBO documentary “Alternate Endings”, released by HBO August 14, 2019, plainly states:

“My observation about the way people die, at least in America, is they are not allowed the opportunity to be part of the process.  For my way of thinking, the part that bothers me immensely is not being allowed to be part of that process. It’s my death. Go with what you believe, but don’t tell me what I have to do.” 

Our Mission

That, in a nutshell, is the mission of End of Life Choices California: to bring more attention to these issues in our populous state. We aim to make sure that BOTH those seeking medical services and those providing medical services are working with the same information and understanding when it comes to these critical discussions about end of life decision-making.  Our goal is simply to help more Californians, in clear, honest and informed communication with their physician and family, decide for themselves how they will die with their dignity intact and leave a peaceful legacy for their loved ones.

I am looking forward to seeing this new documentary.  It looks like it will be just the kind of film we will want to include in our resource-rich website, endoflifechoicesca.org,  which is designed to assist anyone (patients, hospices, nurses, physicians, journalists) seeking information about California’s End of Life Option Act.  The site, also offers other end-of-life planning tools to help individuals take control over how they die, in the same way they have engaged in their life.

End of Life Choices California offers information and personal support to anyone seeking help facing end-of-life decisions through our state-wide volunteer program. You can read about our services here.

 

We are growing up

End of Life Choices California is growing up.

We launched  in February 2019 as  just the spark of an idea.  An idea full of purpose, caring, enthusiasm and commitment.  The four of us came together to create a new nonprofit dedicated to providing accurate information and personal support to the seriously and terminally ill people of California.  We decided to name our organization End of Life Choices California to represent choice at the end-of-life. And as you will see, we have already come a long way.

On our way!

Since early February, we filed the appropriate papers with the State of California to form a non-profit organization. We built a resource-rich website that is very user friendly and welcoming. We are writing a regular blog, and getting new subscribers every day (subscribe here.) We have a Facebook page with more than 100 “likes” (like us!). We are preparing funding proposals and developing marketing and fundraising plans. We have formed two excellent teams to help guide us: our esteemed Board of Directors and a carefully chosen Advisory Committee. Our founding directors formed an Organizational Management Team which currently manages our day-to-day operations and volunteers. Our strategic plan includes continuing to develop a statewide service model and hiring an Executive Director, Program Manager, and Development Officer over the next 12-24 months.

First Training

We held our first Client Advocate Volunteer training in Los Angeles in early June and are holding our second Client Advocate Volunteer training in San Francisco on August 18, with another southern California training planned later in the Fall. See all our events here. Be sure to let us know if you’re interested in becoming a volunteer.

We have been doing all of this on faith, commitment and a deep sense of knowing we are doing the right thing: meeting the needs of Californians facing end of life decisions with factual, legal, and compassionate information and personal support.  We have fielded dozens of phone calls and provided support to a number of dying clients. We have already made at least a dozen presentations to community groups, senior centers, and hospices. We want to do more! Please feel free to share your ideas with us and also share about us to your friends and colleagues who might be interested in any service we can provide, or who may be looking for a speaker. Forwarding this blog post is a great way to do that.

Finally 501(c)(3)

Lastly, and importantly, we are happy to report that we recently received a letter from the Internal Revenue Service congratulating EOLCCA on being recognized as a tax-exempt non-profit public charity organized under Internal Revenue Code section 501(c)(3), back-dated to the day we incorporated in February, 2019. This means that if you want to help us keep growing by giving us a gift, those gifts may now qualify as a charitable deduction on your tax return.

We are thrilled that our early work has laid the groundwork for this growing organization that will make a difference in peoples’ lives.  We are truly growing up.  And, yes there’s more! We are honored to have received our first major donor gift of $10,000!

It is so gratifying to know that others believe in our mission as much as we do.

So no more training wheels for us.  We are moving forward purposefully, step-by-step, knowing we are doing something truly worthwhile for California, and trusting you will help. Together, we can advance public understanding and compassion for those making thoughtful decisions about managing terminal illness and their dying, and help bring peace and comfort to the loved ones who care about them. There is a social movement and change happening that is improving end of life choices and decision-making.  We are proud to be part of it.

If you would like to help us continue to grow our services and client support program, please visit EOLCCA  to make a donation online, or send a check to EOLCCA, 530 S Sierra Ave #30, Solana Beach, CA 92075.

With gratitude for your continuing support,

Judy, Karen, Claudia & Lynne
Founding Directors