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!

2023 National Clinicians Conference on Medical Aid in Dying

Revolution Hall, Portland, OR  February 17-18, 2003

The American Clinicians Academy on Medical Aid in Dying and Death with Dignity are thrilled to announce the jointly-facilitated 2023 National Clinicians Conference on Medical Aid in Dying — February 17-18 in Portland, Oregon, at the wonderful Revolution Hall. (Usually reserved for rock concerts, but aren’t aid-in-dying clinicians rock stars?)

The incentive for the first, 2020, National Clinicians Conference on Medical Aid in Dying, originated from the pressing need for clinical discussions, explorations and evidence-based knowledge about aid in dying. With 10 states and Washington DC providing for the option of legally assisted deaths, some 22% of the U.S. population has gained access to medical aid in dying. It has become a significant end-of-life option. This has driven the need for increased evidence-based knowledge and clinical care — provided for the first time at the 2020 conference, now to be continued and updated at the 2023 two-day event.

There’s a lot we learned from the first conference in 2020. Clinicians were hungry for information about the direct care of patients considering medical aid in dying, and the conference more than fulfilled that hunger. Even more significant was the deeply emotional camaraderie between some 300 aid-in-dying clinicians gathered for the first time in one place at one time. We’d become so used to working in relative isolation in our medical communities that joining a crowd of deeply caring and committed colleagues literally brought some to tears. And the second day of the conference marked the birth of the Academy, to continue the work.

The American Clinicians Academy on Medical Aid in Dying and Death with Dignity are now pleased to co-facilitate NCCMAID 2023.

Lavender Seniors of the East Bay

Facing Difficult “End of Life” Decisions

Many of us have watched our parents, grandparents, aunts, uncles, other family members and friends face difficult “end of life” decisions. Some of them have experienced protracted bouts of illness (e.g., Alzheimer’s, Parkinson’s, Cancer, Stroke, Heart, Kidney or Liver Disease); others have had a sudden death while shoveling snow or a peaceful death in their sleep. And there are examples of everything in between. Though we may know intellectually that all of us will pass on one day, none of us knows how or when. Californians approaching the end of life – no matter how old they are – now have some options to consider.

In 2016, California followed the lead of its progressive neighbor to the north and passed the End of Life Options Act, effective June 9th that year, making it the fifth state in the country to adopt such legislation. There are now 11 states and jurisdictions in the U.S. that support medical aid in dying. This Act was renewed and enhanced earlier this year. Knowing what options might be available through this Act – including the potential for medically-assisted death – may be worth learning about. The Act empowers a person to choose a death with dignity.

For the Third Friday Lunch Bunch on 19th August, we will have a well-versed team of experts on this subject making a presentation to us after our check-ins.

  • Stewart Florsheim, Board Member, End of Life Choices California
  • Ann Gordon, Practice Leader, End of Life Option Program, Kaiser Permanente, NCal

They will help us answer at least the following questions, plus be available for a robust Q&A session after their presentation.

  • What does the act cover and how has it changed this year?
  • What are the other legal options available in California at the end of life?

For more Information, please contact:  Dr. John David Dupree, Secretary at JohnDavid@LavenderSeniors.org

Your Voice – Lessening the impact of dementia

The joy of growing up for me was to be on my own, make my own way, and be myself. Of course, accomplishing these goals is more than the compilation of many birthdays, and is often not easy. Yet multiple decades later, I now hold dear many values and viewpoints which make me–me! And the same is true for many of us, across all walks of human life. The opportunity to represent and guide your own life is an innate part of being yourself. 

When Dementia Takes Hold

This treasured aspect of humanity is impacted when dementia develops and takes hold.  Medical professionals often talk about Alzheimer’s disease (the most common form of dementia) being one of the most feared diseases because of this impact to “self”–self-representation and self-determination.  

I witnessed this first-hand, watching my grandmother deteriorate from Alzheimer’s disease. Like too many others, the disease slowly but surely removed the ability for my grandmother to represent herself. She could no longer talk and had no capacity to express herself–her wishes, views, or needs. My grandmother passed away after years of 24×7 care in different nursing homes which kept her alive, but sadly were not informed to customize their care to her wishes and needs.

Mother with dementia and daughter
Representing Ourselves Now

While we do not yet have a way to fully avoid the future possibility of debilitating dementia, we do have the opportunity to communicate our own wishes, views, and needs. We can represent ourselves now. The following resources are ways to communicate to both loved ones and health care providers: 

A health care directive for dementia

Developed by Dr. Barak Gaster via the dementia-directive.org and available for download from our site, this directive describes three levels or stages of dementia impact. For each stage, you may select from a set of three goals to communicate the type of care you would want to receive.    

A letter added as an amendment to a general health care directive

Created by author Katy Butler, and shared via the Conversation Project organization, this letter can be used as-is, or as a template and modified per your wishes. It provides a thorough listing of specific guidance for various care and treatment options when one can no longer represent oneself.

A dementia directive or amendment serves to clearly inform loved ones and health care teams.  And though currently neither is legally binding, those who are in a position to care for you will be enabled and encouraged to honor you by aligning future care to your views and wishes. Your own voice will be communicated and clear. 

To read more about this topic, please visit our website.

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Becky Oliver is a volunteer with EOLCCA.  Her professional life has been spent as part of Silicon Valley’s tech industry.  Outside of work, her personal passions include contributing to end-of-life causes, with a specific interest in the nature of care for the aging and those nearing end of life.