El Día de los Muertos

Dear Readers,

A few years ago, I happened to be visiting Mexico over October 31 – November 2.

As luck would have it, it was the annual event of el Día de los Muertos. I didn’t know much about it but it turned out to be one of the most interesting and amazing cultural, community events I have ever witnessed.

Dia de los Muertos Alter

I was in the small beach town of Sayulita, on the Pacific coast.  On the first day of the celebration, as dusk approached, everyone in the village came out to decorate their yards. Candles were lit, and altars set up with photographs, drawings, and piles of food or bottles of tequila to reflect remembrance and recognition of family members who had died.  We walked over to the community graveyard and it was beautiful with hundreds of candles everywhere and people dressed in colorful costumes and masks.  There was no mourning, only joy and laughter and deep cultural connection.

I think what I found so personally moving while observing this thousand-years-old tradition was how death (and therefore life) were being celebrated with such joy in honoring and remembering loved ones. Everyone was smiling and laughing and playing fun music and inviting us to celebrate with them.

The Day of the Dead originated several thousand years ago with the Aztec, Toltec, and other Nahua people, who considered mourning the dead disrespectful.

flowers and skull for Dia de los Muertos

I have never forgotten this experience and since then, every year on that day, I too participate.  I assemble in one place pictures of my loved ones who have died, including beloved pets, light a candle and remember them with love and gratitude.  I invite you to do the same if it so moves you.

In our work at EOLCCA, the Day of the Dead resonates so clearly with the dignity, family presence, and peace we wish for our own loved ones, as well as those reaching out to us here in California who are facing terminal illness.  We continue to help our clients and their families navigate the health system in their final months and obtain the end of life care they desire.  We gladly accept donations to help us continue this much needed service.

If (after some normalcy returns to our everyday lives) you ever have the chance to visit Mexico for this one-of-a-kind holiday, I strongly encourage you to go for it!  Here is a link to a National Geographic article that will tell you all about it.

Medical Aid in Living

People seeking MAID are vibrant, courageous, and thoughtful. They know who they are, define the rules of their life, and are clear on their values, including the meaning of living. My last visits with them are typically marked by a sense of clarity and peace.”

 

Benzi M. Kluger, MD, MS, Medical Aid in Living
JAMA Neurol. Published online August 24, 2020

Dear Readers,

We are sharing this excellent article from JAMA Neuro, recently published online, because it is a beautiful tribute from a physician to medical aid in dying (MAID).  For many people there is so much mystery about the process of medical aid in dying.  For some, as with any uncertainty, this can bring anxiety and fear to the table.  As someone who has worked with people facing their dying for nearly ten years, I never cease to be moved at witnessing the grace, courage and honesty that people show when facing end of life decisions. The author of this piece does a beautiful job of describing not only his patient’s journey in accessing medical aid in dying, but also those of others.

I had the honor of speaking to a young woman recently who reached out to End of Life Choices California.  At 35 years old, she is bravely facing a Stage IV breast cancer diagnosis for which she has been told there is no cure.  She is just realizing that she not only needs to plan her life, but needs to plan her death.  We discussed many things, but the one thing that I think brought her comfort was hearing about what it is like to actually die from taking a lethal dose of medication through MAID.  I shared with her that through the many experiences I have had over the years of attending MAID deaths, the overarching feeling I have always observed and experienced is one of peace.  When people who are already dying are given the chance to be in the driver’s seat of their experience, rather than allowing the disease to wreak havoc in their lives and the lives of their loved ones, there is a peacefulness that comes with that.  Family is present, love is shared, goodbyes are heartfelt.  The person dying is able to relax and be held in love as they die.

What more could any of us want, truly?

peaceful river scene

My experience with this is why I have stayed active in the field and why I helped spearhead the formation of End of Life Choices California.  In the article, the physician said the referring physician “had not developed a response to requests for MAID and did not know if she would participate”.  We see this all the time here.  Part of our mission is to provide education to physicians and hospices in order to help eliminate this major barrier to end of life care.  We can help a physician wishing to learn more about MAID by putting him/her in touch with other physicians who are experienced and willing to offer guidance and support.

 

We also encourage all individuals who are thinking about their end of life care and wishes to have a conversation with their primary or specialist physicians NOW.  These conversations take time.  Many physicians are still grappling with how to deal with a MAID request. It is important to identify a physician who will support your end of life choices, whatever they may be, prior to a time you are actually ready to act on those important decisions. Discussions about Advance Care Planning with family and physicians are helpful in this regard. You can find guidance on our website here.

California is making great progress.  The 2019 California Department of Public Health’s annual data report on the use of California’s End of Life Option Act showed that 37% more physicians prescribed MAID than in the previous year.  That gives us hope that we will one day be out of a job.  But for now, we continue to help those who contact EOLCCA looking for support and information about end of life choices.

If you would like to support End of Life Choices California’s work, please make a donation.  We are very grateful for gifts of all sizes.  Thank you.

 

California End of Life Option Act 2019

The recently released 2019 data report on the California End of Life Option Act highlights, among other things, the welcome progress made in the increasing number of physicians prescribing medical aid in dying.

Dear Readers,

In 2019, 246 unique physicians wrote MAID prescriptions, up from 180 in 2018, an increase of 37% from the year before.  This matches the 37% increase in the number of prescriptions (618) written in 2019, up from 452 written in 2018.

This is trending in the right direction.

stethescope

More needs to be done

From our experience over the past 12 months, fully one third of all calls we receive pertain to seeking help finding a physician who participates in the California law.  While the 2019 year data is encouraging, the report also indicates that there is more work to be done to ensure that all individuals facing a terminal illness are both informed about and have access to medical aid in dying.  The report reflects a disappointing lack of diversity among the people who received prescriptions for medical aid in dying and used MAID last year in this culturally rich and very diverse state.

Specifically, according to the report, 353 White Californians (87%) utilized the law in 2019, while comprising just over a third (36.5 %) of the total population of California. Alternatively, 5 Black (1.2%), 26 Asian (6.4%), and 16 (4.0%) Hispanic Californians accessed the law in 2019, not even closely matching their demographic representation of the state’s population (Black: 6.5%; Asian: 15.5%; Hispanic: 39.4%).

CA DPH logo

As attention throughout the country has become laser-focused on racial justice, it is past time to remedy this specific disparity in access to medical aid in dying under the California End of Life Option Act.

Out in the Community

While we have continued to provide in-service training sessions for hospice personnel through video conferencing during the stay-at-home restrictions and continue to work with clients extensively by phone, once the threat of COVID-19 is finally mitigated, our EOLCCA volunteers look forward to getting back out in the community.  We will direct our outreach efforts to broaden end-of-life planning education to reach a more diverse community of terminally-ill Californians.

We want to ensure that every person is aware, early enough in their terminal diagnosis, that in addition to accessing hospice care, he/she may qualify for California’s End of Life Option Act and if so, has the right to request a physician’s prescription for medical aid in dying.  If they would like an EOLCCA volunteer to help them navigate the often cumbersome and lengthy process involved in accessing MAID, including finding physicians who participate, as always, we will be there to support each person and their family members for as long as they would like our help.

Looking for answers about EOL? We can help.

I hope that everyone in California who has ALS or any terminal illness and wants to exercise their right to die on their own terms is lucky enough to give them (End of Life Choices California) a call.

The Right to Access MAID

Dear Readers,

This blog is devoted to Andy’s story and to his father who is terminally ill with ALS.  By discussing his loving but harrowing journey to honor his father’s end of life wishes, Andy, via social media, has generously opened the door wider to other terminally-ill individuals and their families seeking access to Medical Aid in Dying in California.  We at EOLCCA know that many people throughout the state experience similar barriers and do not know where to turn for help.  This story reinforces the very reasons we founded End of Life Choices California and we thank Andy for helping to spread the word about what we do, and how our volunteers can help. Please help to share this information to your networks too!  Thank you.

Andy’s original Reddit post begins below:

Photo by Hush Naidoo on Unsplash

How to get medical aid in dying (MAID)
in California with ALS

Support Advice via Reddit

Hi everyone. I’m writing this post for two reasons:

First and foremost, thank you. I want to thank this community and I can’t express that sufficiently. I came down to California to help my dad who has advanced stage ALS. He asked for my help in some “traditional” suicide methods because he felt like he was running out of options. It broke my heart, and at the same time, I was so glad that he had the courage to reach out for help.

I did some research and discovered that in the state of California, he has the right to Medical Aid in Dying (MAID) and that I would come and help him pursue that option. I advocated for this course of action because it is simple, peaceful, and he can do it whenever he is ready via his feeding tube without being stressed about his closing window of physical ability to do it “some other way.”

I went to California and spent about a month with him, I committed to staying until he had his prescription. I read the full legislative act multiple times and we started to contact his doctors.

Here’s the full text from the legislature (actually a short read).

I advised him to keep his request short and direct, and to tell his doctors that he “wanted to exercise his right as a resident of California to request and receive Medical Aid in Dying due to his terminal condition.” We did the phone calls, and emails, he has several doctors at this stage in his illness.

His own Primary Care physician refused to be the “attending physician” – this is the doctor who actually writes the prescription. He claimed he “couldn’t due to his insurance.” I knew this was not likely to be true, but in the end I got him to agree to be the “consulting physician” if I got another physician to be the attending. Progress.

His neurology team at a local hospital curtly replied to his email and then ghosted us. I had no idea what to do. Then I thought of Reddit.

The ALS Reddit group gave me everything I needed to succeed, and I just wanted to reiterate some of the best advice I got in my original request for help, and some more information.

My original thread on reddit is available here.

There were two helpful links shared, but by far my savior in this endeavor was an organization called “End of Life Choices California.”

They took my initial call, and then assigned a really wonderful volunteer to my case. They wrote documents for me advising me what language to use with our doctors, and ultimately put us in touch with physicians who were willing to be the attending physician. This was key.

My volunteer then called me every couple of days, not just for logistical advice, but to check in on me and how I was doing, and brought up topics that hadn’t even occurred to me about how I might spend my remaining time with my dad. She did a perfect job for me, and after a few weeks, we got my dad his prescription. The feeling of relief was palpable, for everyone involved, especially my dad.

The second reason I’m writing this post: I told End of Life Choices that I learned about them on Reddit and they wanted me to pass this message along:

We would appreciate it very much if you want to tell the Reddit readers that you worked with a very helpful volunteer with End of Life Choices California.

Our website: www.endoflifechoicesca.org

Our phone number: 760.636.8009

This was a stressful and bureaucratic process. End of Life Choices helped me so much. I hope that everyone in California who has ALS or any terminal illness and wants to exercise their right to die on their own terms is lucky enough to give them a call.

Again, thank you all :)

Advance Care Planning and the Role of Hospice

“The peace of mind that results from that rich conversation improves the mental and social well-being of patients and reassures them that their family won’t experience the suffering of not knowing what they would have wanted if they became unable to participate in their own decision-making.”

Stephanie Anderson, M.D., executive director of Respecting Choices

Dear Readers,

We are pleased to share new research by the Coalition to Transform Advanced Care (C-TAC)  described in the latest issue of Hospice News which very clearly underscores the value of Advance Health Care Planning.  “This report identifies several key practices that can be used to promote advance care planning across the country and ensure that people receive the care they want in the setting that is right for them,” said C-TAC Executive Director Jon Broyles.  (Read the full C-TAC report here on their website.)

Supporting and educating people about Advance Care Planning is also the foundation of End of Life Choices California’s (EOLCCA) work as a clearinghouse for information on all end of life (EOL) options, including medical aid in dying here in California.  We know and appreciate that hospices are on the front line of EOL care for the terminally ill.  That is why EOLCCA volunteer trainers focus on reaching out to and providing specialized education programs for hospice staff throughout California.  

Advice for Future Corpses
In-Service Training

During an EOLCCA hospice in-service, we discuss all legal end of life options and the critical role Advance Care Planning plays in the quality of a patient’s end of life care.

Our in-services contribute to a hospice’s more informed approach and a greater sensitivity to the end of life choices their patients wish to make. We are especially pleased to see some hospices now encouraging their patients to move forward in their advance care planning.  Since EOLCCA’s inception, our trainers have provided 17 hospice in-services.

In light of Covid-19, we have adapted these trainings to a successful video conference format, making it possible to offer them throughout the state, from Crescent City in the north to El Centro in the south. We have observed a more proactive response from hospice staff we have trained in interactions with their patients, and we continue to be a resource to all those trained.  A silver lining of this terrible Covid pandemic, is that we can offer this distanced learning to all.

Please let your own hospice, medical, and caregiver networks know that EOLCCA is available to provide similar virtual training sessions, at no charge, about ACP and all end of life options. To request a presentation please call 760-636-8009 or complete this form on our website.  Thank you.

Making COVID Lemonade


As I contemplate life on my porch in late-May 2020, I feel many different emotions.

 

As a nursing home and hospice physician, I mostly feel sad that so many of the people I care for are dying—often without the basic comfort of a family member at the bedside. I also feel concerned and sympathetic for those whose lives have been—and will continue to be—devastated by either the loss of a loved one or the loss of their jobs, mortgages, businesses, and the familiarity and comfort of ordinary life, which may never be restored.

I feel guilty that my dogs, who used to accompany me to work in the nursing homes every day, are not allowed to go with me now for obvious reasons. I am angry at the lack of a defined, dedicated response from our government to protect these precious vulnerable elders. I am distressed by the polarization of our population, the venom that is spouted based on political differences, the baffling anti-science movement, the baffling politicization of things seemingly as neutral as a drug, and the seeming irrelevance to some people of facts. And although we keep hearing this is going to be a marathon, not a sprint, I have the sense we are not far out of the starting gate, I already feel exhausted. With Zoom meetings all day, nonstop news coverage, and a constant stream of new information in the scientific literature, it seems like it’s all-COVID, all the time. And I feel a little guilty that for my family and me, this pandemic is mostly an inconvenience and not something that will wreck our world or create an enduring hardship.
lemonade

I am an Optimist

At the same time, as an optimist, I am trying to make lemonade out of all this. What might we gain from this pandemic? There are obvious tangible gifts, like the favorable impact on the environment. People have learned the importance of handwashing and how to do it correctly. The “great pause” has given people the chance to take stock, reflect, hold space, and perhaps appreciate some of the small things we usually take for granted. We have learned how to use digital technology more widely for virtual doctor visits—even palliative care visits and end-of-life advance care planning discussions—and for professional meetings, webinars, town hall meetings, and the like. When we are practicing social distancing, it is clearly a blessing to be able to commune with others even without the actual physical hugs and handshakes (which may become a thing of the past, sadly). Support groups like 12-step meetings (AA, NA, etc.) now have a large online presence that is invaluable for those practicing recovery from addictions. For health care professionals, online support for burnout is also available.

We have also seen a huge outpouring of charitable work of all kinds, and the heroic contribution of first responders and healthcare workers, who put their own health on the line in service to others—like the certified nursing assistants who work for close to minimum-wage salaries, doing the backbreaking but essential work of providing direct care to debilitated, frail, dependent elders and other chronically disabled individuals. Now more than ever, their efforts should be appreciated and celebrated. 

Advance Care Planning

And during this time when we have more family time (either in-person or virtual), and when people of all ages are dying of this virus, I know more families have taken advantage of the down time to reminisce about loved ones who have already died and to discuss their own beliefs, treatment preferences and what is really important to them. It is the perfect storm for advance care planning! There are many online resources to help families broach these subjects and have deep, meaningful and often healing conversations. With its devastating pulmonary effects, COVID has helped make discussion of intubation and mechanical ventilation more of a household subject. I’ve had multiple conversations with nursing home residents about their treatment preferences, and some of them now say, “If I got the coronavirus, I would not want to be put on a ventilator.”

lemonade

These are difficult times, and this is a cruel pandemic in many aspects—and we will continue to suffer the direct and indirect consequences for a long time to come. But over time, as the dust settles, I am confident that we will have learned some lessons and will come out of it changed for the better in many ways. Let’s be kind to one another, tell our loved ones we love them, we forgive them, we ask their forgiveness, and we treasure our relationships with them.

That is certainly a half-full glass of lemonade, right?  We will get through this together.


Karl Steinberg, MD, CMD, HMDC

Dr. Steinberg has been a hospice and nursing home medical director in the San Diego area since 1995.  He is president-elect of AMDA – The Society for Post-Acute and Long-Term Care Medicine, a past chair of the Coalition for Compassionate Care of California and past president of the California Association of Long-Term Care Medicine.  He is vice president of National POLST and sits on the National Quality Forum’s Geriatrics and Palliative Care Standing Committee, is a certified healthcare ethics consultant, nursing home medical director and hospice medical director.

We appreciate working with Dr. Steinberg on end-of-life care issues and look forward to our continued partnership with the San Diego Coalition for Compassionate Care.  (Dr. Steinberg is pictured above with his wonderful Tessa, Charlotte and Josie.)

Photography by Ghislaine Guerin and Chris Montgomery.

Gentle Tips on Death and Dying

I have never died, so this entire book is a fool’s advice.

Book Review

On the first page of her new book, Sallie Tisdale writes: “I have never died, so this entire book is a fool’s advice.”  But with her knowledge, experience and kind Buddhist heart she explores many aspects of dying and death easily and softly.  Wanting to be a writer she knew she needed a regular job to support herself and chose Nursing.  Thirty years later she is a Palliative Care nurse and a gifted writer.

How you can get ready

“This book is about preparing for your own death and the death of people close to you.”  Dying people often speak symbolically of traveling, a need to pack, catch trains, get to a new place.  She likens her book to a death travel guide, finding out about it, being comfortable with it, learning what happens next.  It is a book about “how you can get ready.”

She writes clearly about communication with those who are dying: listening is the most important part. 

Advice for Future Corpses

If you are a caregiver, she advises, be a gatekeeper, set boundaries, be authentic, know your limits.   Helpfully, she lists many examples of things best not to say.  She describes what to expect in the last months: handling fatigue, pain, toileting, nausea, loss of appetite, depression.

Advice for Future Corpses

Difficult choices

Tisdale also elaborates on the last weeks and describes common symptoms such as shortness of breath, and slowing of digestion, with the rule: do not force food or fluids, and how hard this can be for families.  Also, “the dying person may not want to talk any more, may not want you near, but he doesn’t want to be alone”  Caregiving becomes a “solitary walk.”  She also describes the crisis that may be created for families and decision makers by technology, including defibrillators and ventilators and other medical interventions, that can make choices at the end of life very difficult. 

Sometimes physicians are not helpful and the family needs to be guided by what the dying person would want if he or she could speak and as specified in their Advance Directive if there is one.

Last Days describes experience at the bedside, whether at home, or in a nursing home or hospital.  It includes a discussion of confusion and agitation, worsening physical and existential pain, and the use of sedation.  She also notes the “death bed phenomena” of spiritual experiences including visions, bright lights, other worlds, and unseen visitors.  She describes clearly what active dying looks like including changes in consciousness, breathing, skin color, organ failure, up to the moment of death and hours after.  Then starts the death care process including all the burial and disposal options that are available today.  She ends with a chapter on grief and then joy.  Her appendix includes preparing a death plan, explanation of advance directives, and organ and tissue donation.  

This book is a very thoughtful and inclusive compendium of knowledge needed to care for a loved one who is dying, presented in a gentle and easy way.  

Assisted Death

Her very last entry concerns assisted death.  In California and several other states, this is legal and referred to as Medical Aid in Dying or MAID.  In our culture we value autonomy and it is almost a mandate that people take responsibility for their own lives.  It follows that we allow people the room to make their own choices about how they die.  It is the mission of End of Life Choices California to assist Californians with terminal or chronic illness by providing education, accurate information and access to all available legal options concerning their end of life wishes.  It is this freedom of choice that we at End of Life Choices California seek to honor and uphold so that everyone can exercise their own choice.

Judy Schnack, a retired AIDS and Hospice nurse, MSN, RN, FNP, is another of our esteemed Client Advocate Volunteers, and one of our first trained, in the summer of 2019.  She has facilitated a grief support group and has also presented Advance Planning seminars  for the City of Encinitas.  She has given presentations on behalf of EOLCCA, has counseled numerous EOLCCA clients, and attended several client planned deaths.  Judy and all our volunteers continue to work remotely during this pandemic in response to the almost daily calls and email requests for information on medical aid in dying and support from terminally ill individuals throughout the state.

Our Favorite Music

Dear Friends, 

In this continuing and unprecedented time of disruption and uncertainty, we wanted to share some of our favorite music with you.  Music has been known for centuries to be a healing balm for the heart and soul in times of need, just as it can be uplifting and joyous in times of celebration.  A 2014 article from Psychology Today discusses, “Does Music Have Healing Powers?” and yes, we know it does.  

Calming, Inspiring, Uplifting

I asked our board members and volunteers to send me their favorite pieces which they find calming and inspiring or uplifting, and below are the offerings I received.  We hope you find them to be enjoyable, healing and supportive to you and possibly anyone sharing space with you.

We are still here for you and others

In the meantime, remember that EOLCCA is still here for you or any friend or family member who might currently need support facing end-of-life decisions.  Lately, in addition to spending a lot more time on the phone with our clients seeking EOL support, we have been helping people understand how to lay out their end-of-life wishes with an Advance Directive (Assigning Healthcare Proxy and Living Will).  Here is a link to our website to find information about these matters.  Please call or email if we can be of assistance in any way.

To please, enjoy some of our favorite healing music, perhaps while filling out or updating your Advance Directive!  We wish you and your loved ones peace, hope and health.

Our music selections

Two last things: 

While not music, one of my favorite poets, Mary Oliver, crafts words that sound like music and so I wanted to share an interview with her by Krista Tippets from On Being “Poetry for Tumultuous Times”.  It is a delightful interview and sure to warm your heart. 

When you load the page, you have to scroll down a bit and find the interview with Ms. Oliver.

Interview with Krista Tippets at: onbeing.org

Poem

And another poem to end with, and blessings to all…

For the Interim Time 

When near the end of day, life has drained
Out of light, and it is too soon
For the mind of night to have darkened things,

No place looks like itself, loss of outline
Makes everything look strangely in-between,
Unsure of what has been, or what might come.

In this wan light, even trees seem groundless.
In a while it will be night, but nothing
Here seems TO believe the relief of dark.

You are in this time of the interim
Where everything seems withheld.

The path you took to get here has washed out;
The way forward is still concealed from you.

“The old is not old enough to have died away
The new is still too young to be born.”

 

You cannot lay claim to anything;
In this place of dusk,
Your eyes are blurred;
And there is no mirror.

Everyone else has lost sight of your heart
And you can see nowhere to put your trust;
You know you have to make your own way through.

As far as you can, hold your confidence.
Do not allow your confusion to squander
This call which is loosening
Your roots in false ground,
That you might come free
From all you have outgrown.

What is being transfigured here is your mind,
And it is difficult and slow to become new.
The more faithfully you can endure here,
The more refined your heart will become
For your arrival in the new dawn.

From  To Bless the Space Between Us”  by John O’Donohue

COVID-19 and MAID

This KQED (San Francisco) story by April Dembosky offers a wealth of
accurate information for anyone thinking about using the California
End of Life Option Act (EOLOA) to access MedicalA id In Dying (MAID). 

The story is a concise discussion for those terminally-ill Californians who would qualify for the law right now, irrespective of the current pandemic.

And finally, for those seeking a physician willing to prescribe aid in dying medication, this piece tells us there is a growing number of doctors in California available for this end-of-life choice.

You can read or listen to the story here.

 

a child's delightful oil painting of a clown with a blue hat and a red ball on top.

Dr. Lonny Shavelson  (Beth LaBerge/KQED)

Note to our Readers:

EOLCCA volunteers are continuing to respond to terminally-ill individuals and their families who call us for information and personal support around their end of life options. This pandemic continues to change so much in all our lives.  But those who call EOLCCA are suffering from cancers, neurodegenerative diseases, COPD, heart failure, etc. with a 6 month life expectancy, or less.  And they are looking for compassionate physicians who will prescribe aid in dying medication, like Dr. Shavelson.  Fortunately, there is a growing number of like-minded, empathic physicians throughout the state.  Have you had this discussion with your doctor?

Please call  760-636-8009 to speak to an EOLCCA volunteer or email info@endoflifechoicesca.org. We are here to help.

My First Death

I don’t mean that I saw the bright light at the end of the tunnel and came back to the big metal table.
I’m not writing about my childhood dog, Brandy. 

I’m not referring to my first funeral. 

I mean the woman in her 70’s who took her last breath with me by her side. Voluntarily. 

She chose to use Medical Aid in Dying

A couple of days before we entered shelter-at-home because of the global coronavirus pandemic, I sat with an End of Life Choices California (EOLCCA) client who chose to use MAID (Medical Aid in Dying) to end her suffering and end her life. And although I tossed the idea around of waiting for a better time to write and publish this blog post, I realized there couldn’t be a better time. In these days of pandemic, when folks normally might shy away from the conversation, the very topic of death is on everyone’s mind. The statistics will become names and someone you know will possibly die.

He would joke about calling Dr. Kevorkian

I have a large family and was exposed to death at a very early age with many traditional Catholic funeral masses for grandparents, aunts, uncles, cousins, and Mom and Dad. My mother died when I was 8 years old from lung cancer and my father died of ALS in 1993, when I was 22 years old. There is no cure for ALS and it is fatal, with most patients dying between 2 -5 years of diagnosis. Dad would joke about calling Dr. Jack Kevorkian, the doctor who assisted people with acute medical conditions to end their lives. But you also might remember that Dr. Kevorkian was in and out of trouble with the law during those years so it was really just a fleeting thought, more of a joke that Dad would use to make light of the heavy situation. Would he have actually gone through with something like that if it had been a legal option?  I will never know the answer, but I’m sure the choice would have been comforting as his body and quality of life completely deteriorated while his mind was perfectly intact. 

She was declining

Our client “Annie” was diagnosed with terminal cancer and suffering from severe heart issues. Her leukemia had already caused her to go blind. She loved reading. She was well-educated, smart, sharp and witty. When her vision had deteriorated to a point where she couldn’t read anymore, she donated bins and bins of her books. She couldn’t eat the food she loved anymore. She was struggling with moving around her two-story condo. She was having restless nights while trying to sleep. She was physically uncomfortable and declining. So she reached out to End of Life Choices California to ask if we had volunteers who could support her and be with her the day she chose to take her life-ending medication.  When my Client Advocate Volunteer team leader asked me to be a part of this case, I was anxious and nervous. I’d never been in the same room with someone as they actually died. I’ve touched many cold hands during open casket wakes, but never said goodbye to someone or sat with them while they transitioned. I didn’t know what to expect. Will she actually go through with it? What if she changes her mind? How long will it take? Research tells us the time to death can be 30 mins or 10 hours. What will her body do? Will she twitch? Will she make noise? Was she scared? 

Her suffering was over

We had an hour to sit with her between the anti-nausea medicine and the final medication that would put her to sleep and ultimately put her into a coma followed by death….so we asked her some questions. What was she most proud of? Did she have any regrets? These are the types of questions that I have longed to ask my parents…if I could just have had a little bit more time with them. Annie had funny answers, and we laughed and joked with her about the stories of her childhood. Then we helped her get into bed. She had her playlist going on her iPod, the window open and the rainy breeze floating in. As Annie quickly fell into the deepest sleep she will ever have, I saw beauty in her death. The edginess I had been feeling turned to numbness. And then relief. Her suffering was over.

I often become obsessed with getting people’s stories on camera and am constantly photographing and recording everything around me. When I meet someone like Annie, I am sad that the stories she told us will just be molecules that fall to the ground…and then I remember that Annie’s journey is not my journey. However, Annie’s ability to choose her ending is a right I will continue to fight for, in honor of my Dad. 

a child's delightful oil painting of a clown with a blue hat and a red ball on top.

The author’s mother enrolled her in oil painting classes very early on to encourage her artistry. She painted this clown when she was just six. It reflects the appreciation for clowns she learned she shared with Annie.

I was given the gift of courage and creativity by my parents and I will continue to share what I find beautiful around me. It might be a photo of a flower, a beautiful dish I cooked, or a funny interview with a 6-year-old. 

Life and death are both beautiful. And when you face death, you begin to see more of the beauty in life. 

Laura De Merchant, an accomplished photographer, observer and recorder of life journeys, serves as a Client Advocate Volunteer for End of Life Choices California in the San Diego area. Once life becomes normalized again with the pandemic behind us, Laura and her fellow volunteers will again be able to visit with our clients in person and support them in obtaining MAID and determining the care they want during their end of life journey. Our volunteers are also eager to speak to community groups interested in learning about the California End of Life Option Act, Medical Aid in Dying (MAID), preparing an Advance Health Directive,and finding comfortable ways to begin such conversations with one’s health care providers and loved ones. Please go to our website to learn more about our services or call 760-636-8009 to speak to a volunteer.