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!

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!

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. 

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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!