When End-of-Life Care Calls
In my pursuit to better understand Medical Aid in Dying (MAiD), I came across Dr. Lonny Shavelson’s book, Medical Aid In Dying: A Guide for Patients and Their Supporters. The book was thorough and provided an abundance of valuable information.
Toward the end of the book, Dr. Shavelson shared insights from a study on the grief process experienced by those who have lost someone through MAiD. One of the key findings was the presence of “disenfranchised grief,” a term used to describe the unique and often unacknowledged grief that arises from the stigma surrounding aid in dying. Many families feel hesitant to disclose that their loved ones chose MAiD, fearing judgment or criticism from others.
Reading this, I felt a profound calling to create a supportive space for those navigating this specific type of grief. This led me to establish an in-person bereavement group for people who have lost someone through MAiD.
The name LOOM—Loved Ones Of MAiD: Weaving a Tapestry of Healing—came to me as I envisioned a group where people could share their experiences and heal together.
To prepare, I took time to reflect, attended various bereavement groups, and read extensively about grief, mourning, and MAiD. This helped me gain a deeper understanding of the needs of those I hoped to support.
I started the group with two individuals who had lost loved ones to MAiD. At the end of our first meeting, one woman shared something that deeply resonated with me. She had been attending a bereavement group at a hospice for six months but had never disclosed that her husband had chosen MAiD. She had kept this detail hidden, worried about the judgment of others in the group. However, in our LOOM group, she finally felt safe enough to share her husband’s story without fear of criticism.
Her relief and gratitude affirmed the importance of this work. LOOM had become the safe haven I envisioned—a place where people could openly share their experiences and find solace in knowing they were not alone.
Ellen Friedman, M.A.
Ellen Friedman, M.A. (she/her/hers) has been following an inner calling to educate, partner and companion people at end of life for a few decades. As a retired physical therapist who worked across the continuum of healthcare, she discovered a sacred space being with people as they approach the conclusion of their life’s journey. She is passionate about people learning end of life options so that friends and family can honor their personal wishes. Ellen serves people in person in Mesa and Gunnison counties and virtually throughout the world. She brings a peaceful loving presence to all conversations.
Navigating Dementia and End-of-Life Options
As a board member of End of Life Options Colorado, I often respond to people seeking more information about planning for the future, especially when it comes to end-of-life decisions.
Recently, I received an inquiry from a 50-year-old woman, whom I’ll call Cindy. Cindy had watched her grandmother’s long battle with Alzheimer’s disease, which left a lasting impact on her. Her grandmother was hand-fed for an extended period, even after she could no longer recognize Cindy or other family members. Cindy was determined to avoid experiencing something similar and reached out to learn more about the advanced directives related to Alzheimer’s and dementia care.
During our conversation, we discussed Cindy’s personal wishes, focusing on her desire for clarity and control over her future care. I helped her understand that end-of-life situations, especially with dementia or Alzheimer’s, don’t always follow a predictable path. Cognitive decline can vary and fluctuate due to different factors.
One of the most important things I encouraged Cindy to do was to talk with her family, friends, and, most critically, her medical power of attorney. These conversations ensure that the people responsible for honoring her wishes fully understand her preferences in case she becomes unable to make decisions for herself.
We also explored various end-of-life options available on our website, including palliative care, hospice care, voluntarily stopping eating and drinking (VSED), palliative sedation, and the option to decline or stop life-sustaining treatments. Since individuals with advanced dementia typically don’t qualify for Medical Aid in Dying, we didn’t focus on that option.
However, I explained to Cindy that there are directives available that allow us to decide in advance when we would no longer want life-sustaining measures if we were to develop severe dementia. Organizations like Final Exit Network and Compassion & Choices offer dementia-specific advance directive forms that complement standard advance directives. These forms allow individuals to specify at what stage of dementia they would want to decline further medical interventions.
Here are links to these forms:
I appreciate the empowering language used in these forms, particularly the section titled “My Chosen End Point,” which allows each of us to define what we feel is best for ourselves. These directives can be adjusted over time, as long as we remain mentally capable, to reflect any changes in our wishes.
Cindy found these resources incredibly valuable, and our conversation inspired me and some of my family members to complete similar forms for ourselves.
If you haven’t already, it may be worth thinking about your own wishes in the event of significant cognitive decline. Consider discussing your preferences with those who may be involved in your care, and explore whether adding one of these dementia directives to your advance care planning is right for you.
Ellen Friedman, M.A.
Ellen Friedman, M.A. (she/her/hers) has been following an inner calling to educate, partner and companion people at end of life for a few decades. As a retired physical therapist who worked across the continuum of healthcare, she discovered a sacred space being with people as they approach the conclusion of their life’s journey. She is passionate about people learning end of life options so that friends and family can honor their personal wishes. Ellen serves people in person in Mesa and Gunnison counties and virtually throughout the world. She brings a peaceful loving presence to all conversations.
Get to Know End of Life Options Colorado
Our own Barbara Morris and Sigrid Swerdlin shared their thoughts about End of Life Options Colorado recently with host of Great Day Colorado. Listen in!!
What a Relief It is…!
We are thrilled to announce significant updates to the Colorado End of Life Options Act that will greatly enhance access to medical aid in dying for terminally ill patients. These changes, which include a decreased waiting period and the inclusion of advance practice nurses as attending and consulting providers, represent a monumental step forward in ensuring compassionate and timely care for those facing incurable terminal illness.
One of the most impactful changes is the reduction of the waiting period. Previously, patients had to endure a grueling 15-day wait to receive their medications. This often led to desperate calls from patients and their loved ones, filled with anxiety and fear about how they could possibly wait so long. With the new, shorter waiting period, patients will now be able to receive the care they need more swiftly, alleviating much of the distress and uncertainty that they previously faced.
In addition to the decreased waiting period, advance practice nurses are now included as attending and consulting providers in the medical aid in dying process. This expansion means that patients will have greater access to qualified healthcare professionals, reducing the burden of finding someone to help them, especially in areas where there may have been a shortage of available providers. No longer will patients have to worry about who will care for them or how they will find assistance near their home.
These changes mean that patients will now find care closer to home and with decreased wait times, allowing them to have more control over the timing and manner of their death when facing an incurable terminal illness. What a profound relief this will bring to so many individuals and their families.
Heartfelt thanks to the Colorado Legislature and Governor Polis for making these compassionate and necessary changes a reality. Their dedication to improving the lives of terminally ill patients in Colorado is truly commendable. As a physician and advocate for terminally ill patients in Colorado, I am gratified that I will no longer have to tell patients they have extend their suffering due to a prolonged waiting period, nor that there isn’t anyone in their community to care for them. There are indeed remarkable achievements
The Business of Dying
We had the privilege of sitting down with Crispin Sargent, a certified Grief Yoga instructor, Grief Educator, End of Life Doula, Certified Advance Care Planner, and member of the End-of-Life Options Colorado Board of Directors. With over 35 years of experience, Crispin has dedicated her career to helping clients delve deeply into their end-of-life wishes and plans. Here, she shares her invaluable insights on the importance of end-of-life planning.
The Importance of End-of-Life Planning
End-of-life planning is crucial for mapping out your current situation and envisioning where you would like to be in your final days. Regardless of when you start, having a plan provides guidance on how to live now and what to prepare for in the future.
Essential Questions for End-of-Life Planning
Crispin emphasizes the importance of asking key questions as you navigate the “business of dying”:
- What is your plan, and how will you fund it?
- What are the associated costs? Consider emotional, physical, financial, and time costs.
Components of Your End-of-Life Plan
Health Projections
- Evaluate your current health. Are you in good health with a solid self-care plan?
- Consider pre-existing conditions and family history.
- Budget for unforeseen health conditions or accidents.
Support Systems
- Solo aging: Do you have a plan for aging alone?
- Outside support: Will you need services as you age, and who will provide them?
- Family involvement: Is it realistic to expect family support, and what will it cost them emotionally, physically, and financially?
Understanding Available Services
- Medicare and Medicaid
- Veterans Benefits
- Social Security
- Disability
Living Arrangements
- Your home: Is it paid off, affordable, and safe as you age?
- With family: Is living with family a reasonable expectation? Have you discussed it with them?
- Assisted living: Can you afford it? Will you need to sell your home to pay for it?
Financial Investments
- Retirement plans and 401Ks
- Inheritances
- Social Security Benefits
Legal Documents
It’s crucial to have the following documents in place and updated annually:
- Medical and Financial Power of Attorney
- Living Will or Advanced Directive
- Last Will and Testament
- MOST (Medical Orders for Scope of Treatment)
- Burial preferences or plans
Navigating and Updating Your Plan
Having clear answers rather than assumptions is vital. Regularly re-evaluating your plan ensures it remains relevant and realistic as circumstances change.
End-of-life planning is an essential process that provides peace of mind and clarity for you and your loved ones. By addressing these critical areas and seeking guidance from experts like Crispin Sargent, you can create a comprehensive plan that reflects your wishes and needs.
Finding Purpose in the Pain: A Journey Towards Advocacy for End of Life Options
As she stood by her husband’s side, her heart heavy with sorrow yet filled with determination, she made a silent promise. A promise to herself, her husband, and all those who would face similar struggles in the future. In that vulnerable moment, as her husband prepared to take his final breath, she found clarity amidst the pain.
With unwavering resolve, she pledged to volunteer her time, energy, and voice to the cause of end-of-life options. For her, it wasn’t just about easing her husband’s suffering in his final moments, but about paving the way for others to find peace and dignity in their own journeys.
As the last traces of life slipped away from her beloved partner, she whispered her intentions. “When this is over,” she vowed, “I will volunteer at home in Arizona.”
With each word, she felt a sense of purpose stirring within her. She envisioned herself reaching out to patients and families, offering them the support and guidance they so desperately needed. She imagined herself walking alongside them, helping to navigate the complexities of end-of-life care, and ensuring that their wishes were honored till the very end.
In her mind’s eye, she saw a future where end-of-life options were not just a distant dream but a tangible reality. She knew that change wouldn’t come overnight, but she was ready to roll up her sleeves and do the work.
In Arizona, where she called home, the fight for end-of-life options was already underway. There was an End of Life Options group tirelessly working towards a new law, a law that would give individuals the autonomy to make choices about their own deaths. https://azendoflifeoptions.org/
With a renewed sense of purpose, she joined their ranks, lending her voice to the chorus of advocates calling for change. Together, they fought for the rights of the terminally ill, for the freedom to die on their own terms, and for the compassion and dignity that every human being deserved.
But her journey was far from over. As she stood amidst the quiet stillness of the room, she knew that her purpose now lay in helping others find the same peace and comfort that her husband had found. And so, with a heart full of hope and a spirit strengthened by love, she embarked on her new path as a volunteer, as an advocate, and as a beacon of light in the darkness of end-of-life care.
For her, the journey towards advocacy was not just a choice, but a calling. And in answering that call, she found solace in knowing that her husband’s legacy would live on, not just in memories, but in the lives of those she would touch with her kindness, her compassion, and her unwavering commitment to making the world a better place for all those facing life’s most difficult journey.
For myself, as her husband’s physician, it was an honor and a gift to witness his peaceful death and the fulfillment of his wishes as well as her resolve, resilience and compassion in moving ahead and becoming a volunteer. Gratitude and generosity know no bounds.
Barbara Morris, MD
Barbara Morris, MD, (she/her/hers) a geriatrician, Golden Colorado, is a strong proponent of the Colorado End of Life Options Act. Barbara is a fierce defender of every Coloradan’s right to patient-centered end-of-life care with equal access to all legal options. In her consulting practice, she works with patients and families to understand their care management and end of life needs. She is proud to be a founding member of End of Life Options Colorado Board of Directors. Barbara lives in Golden, Colorado with her husband . her brave, her adorable chihuahua. She thrives on enjoying the beauty and peace of the Colorado mountains. In addition to her role with End-of-Life Options Colorado, Barbara is an emeritus member of the Board of Directors of The Family Tree in Denver. She is proud to have served on over 20 volunteer teams in the United States as well as India, Vietnam, Ecuador, Peru, Tanzania, Paraguay, Guatemala, and Cuba.
