Navigating Grief After Medical Aid in Dying With Special Bereavement Group

Navigating Grief After Medical Aid in Dying

This is the first in a series of four sessions held every other week. The series may be repeated at additional times throughout the year – see contact info below.

Are you grieving for a loved one who used medical aid in dying, or know someone who is? Our private group will provide a safe, secure space to explore, receive support, and hopefully resolve the special issues that medical aid in dying can bring up as you grieve your loss.  In coordination with EOLCCA, the Bereavement Group is compassionately and expertly facilitated by Jim Reiser, LMFT.  Jim is the Bereavement Coordinator of Hospice of the North Coast. He holds an MFT from Chapman University and BA in psychology from CSUSM, and has been doing this caring work for 11 years.
There is no charge to attend these group sessions. If you have any questions or would like to participate, we ask you to email Lynne Calkins at info@endoflifechoicesca.org, or call EOLCCA at 760.636.8009 and ask Lynne to contact you.
For further reading about medical aid in dying, click here to read one of our blogs on this subject.

What actually happens during a MAID death.

As an End of Life Choices California (EOLCCA) bedside client volunteer and retired medical professional, I’ve attended both medically-assisted deaths (MAID) and non-MAID deaths. Most people who qualify choose MAID because they want some control over how and when they die once they are declared terminally ill. Their diseases have already taken so much control away from them.

Sometimes people never even take the MAID prescription but feel comforted by knowing they have it in case of need. Other times the disease progresses too quickly, and they lose the capacity to ingest the medication themselves as the law requires.  We advise people not to wait until the last moment to start the process of making their requests for MAID from two doctors. It can take a while to find a prescribing doctor if your physician won’t prescribe (or participate in MAID). Once prescribed, the medication must be prepared by a special compounding pharmacy and it could take up to a week to be prepared and delivered.

Our client volunteers are trained to work with people and their loved ones prior to ingestion to prepare them for the process, so they feel safe in deciding to just have family/friends present if that is their wish.  However, if needed, we are honored to be there the day they take their medication.

peaceful river scene
Questions

We answer many questions in the period leading up to the day of death and on that day itself.
As questions arise, we answer them all. 
Typical questions include:

  • What if the medications don’t work?
    Answer: The MAID medications prescribed by the doctor are lethal and are intended to be fully effective. With the client and their family, we thoroughly review the medications and procedures, and confirm that the client still wishes to take them on the day of death. 
  • How long will it take to die?
    Answer: Within five to ten minutes after ingestion, the patient will fall into a deep sleep and then into a coma and be unaware of anything else. It will take between 30 minutes and possibly up to four hours or so for the patient’s heart to stop beating. The patient’s loved ones may hear a few noisy breaths as the body shuts down. We will be there supporting the family and loved ones during that period and can help explain what may be happening as the patient passes away. 
  • Will patients soil the bed after ingestion or when they die?
    Answer: No, there is no involuntary release of body fluids during this process.
Being present

Most people prefer having two of our trained client volunteers present on the day they choose to take the medication. Emotions can be intense when someone is about to die, and it can help to turn the mechanics of preparation over to an experienced neutral person familiar with the process. It allows everyone else the opportunity to concentrate solely on their person and not be distracted by monitoring timing intervals between ingestion of the anti-nausea drugs and measuring and mixing the final medications, while still being present for their loved one. 

Experiences are as varied as individuals and families can be. Some people have a spiritual advisor offer a prayer or blessing. I’ve seen very quiet deaths where the volunteers withdraw to another room, leaving the group or family member alone at their request. I’ve been at deaths where the TV is on and everyone is reserved and not saying much. EOLCCA volunteers try to support their clients to have the death they want. Often the dying person is so ready for death they say things like, “Let’s get this show on the road.” Or, “I’m tired; I want to do this now.”

Mostly I’ve witnessed profound expressions of love such as: adult children and friends entwined with their dying person or stroking them tenderly, people singing to the dying, beloved pets snuggling next to their owners, last minute forgiveness amongst divisive family members, an aged  taciturn father apologizing to his middle-aged son for being too hard on him, and bikers regaling each other with tales of their escapades. The common threads are deep sentiments of love towards a cherished dying person.  

Dying man with wife
An honor

Afterwards, those present speak of grief, of thankfulness at being asked to be there for such an intimate experience, and recount stories about their now deceased loved one. EOLCCA has formed an online Bereavement Group specifically for family members involved in a MAID death, and we are able to offer them this option to help process their grieving.

All of EOLCCA’s 34 active volunteers consider it a privilege and an honor to help terminally-ill people, whether over the phone or in person, to have as much control as possible over when, with whom, and where they will die.

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Cynthia Tuttelman, an EOLCCA Client Volunteer, is a retired family physician and quilter living in Petaluma.

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

Getting the Word Out About Dying with Dignity

At End of Life Choices California, one of our major objectives is to spread the word about all of the medical options Californians have at the end of their lives for dying with dignity, including (if they qualify) medical aid in dying. That objective is so important that it sits at the heart of our mission statement:
EOLCCA provides Californians the information and support to successfully navigate their legal end-of-life options.

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Knowing one’s choices is key

It continues to surprise us that few Californians take advantage of the End of Life Option Act. We understand that there are many reasons for that. For example, many individuals (including doctors) may not know about the law, or they may not support it on religious or other grounds. We just want to make sure that, at the very least, Californians know about the law so–if they qualify–they have the choice to use it.

With that in mind, I recorded a Perspective piece for KQED (the public radio station in northern California), about how the law clearly benefited one of our clients, along with mention about how few Californians use the law. By the end of 2021 (the last year for which we have usage data), less than a quarter of 1% of deaths in California resulted from using it that year. 

Looking at the raw numbers, in 2021, 772 individuals had prescriptions written, and 448 ingested and died from the drugs prescribed that year. NOTE: We always see a disparity between prescriptions written and ingestion because many people end up dying on their own–but feel great relief knowing they have the drugs if they need them.

If you would like to listen to my Perspective, here’s the link. And–hey–please spread the word!  Thank you.

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Stewart Florsheim serves on the Board of Directors of End of Life Choices California and chairs its Outreach and Education Committee. He has been an activist and leader in the end-of-life choice movement in California since 2003. During that time he was deeply involved in the effort to successfully pass the California End of Life Option Act in 2015. Stewart has given many presentations on end-of-life choice, including on radio and TV. 

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