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
Advance Care Planning: What is it, why is it important, and what you need to know
Wondering about Advance Care Planning (ACP)? Let’s explore what you need to know with Sigrid Swerdlin, ACP expert and speaker.
What is Advance Care Planning?
Advance Care Planning is the process of preparing for future decisions about your medical care if you’re seriously ill and unable to communicate. This process requires you to think about what you want medically to happen to and for you if you are not able express this yourself. It also requires you to choose and empower a person you trust to speak up on your behalf. These thoughts and plans need to be communicated to the person who will speak on your behalf (referred to as the agent) and with the family/friends so that there is no question of who’s doing what in a time of need. This communication and ‘letting people know’ is key to the success of making sure your wishes are being executed in case of need. Often all of this is documented and is a part of the more comprehensive advance directives, which covers not only medical care, but also financials, estate plans, spiritual and environmental wishes, and body deposition planning.
Why is Advance Care Planning important?
If you have no advance care plan set up and you end up in a situation where you are unable to communicate your wishes, doctors and/or the state will assume that role and take decisions about your medical care on your behalf. They will take these decisions based on their beliefs, ideas, and values and this might not reflect your wishes. But because you are unable to speak for yourself and nobody has been assigned AND informed about your wishes, someone else will do it for you.
Do I need to have a professional help me set up my documents?
This really depends – on many factors. If you are someone who’s comfortable to do a lot of research by yourself and process complex topics by yourself, document the decisions you take from that thought process and being able to communicate all this to your family and agent you will not need a professional to help you. If on the other hand your time and resource access is limited, you might want to consider getting support. This support comes in many forms, and you can decide what level is right for you. Attending workshops that provide you with information on advance directives and advance care planning. This should give you an idea of the various components involved in setting this up. You might be able to go ahead by yourself and/or with your family from there. If you would like more assistance, the 3 professionals that can assist you with the completion of the advance directives are:
- Financial advisor / Estate planners – for all matters related to finances and estate
- Funeral directors – for all matters related to body deposition
- Advance Care Planners / End of Life Doulas – for everything else
Financial advisors / Estate planners as well as Funeral directors might be able to assist with some overlapping topics, but it’s rare that they offer all services for a holistic, all-encompassing advance directive.
Likewise End of Life Doulas / Advance Care Planners are an equally fantastic resource to assist you and your loved ones in the considerations, documentation and communication of your medical, spiritual and environmental wishes, but they typically refer to financial advisors for finance and estate topics. End of Life Doulas are however aware of body deposition options and can assist you with knowing your options and decision making.
Are there critical decisions I need to make before I set up my advance care plan?
There are 3 critical questions that are at the start of all advance care planning
- Do I care what decisions are made for me when I cannot speak for myself?
- Do I care what happens to my body, my estate and my legacy once I’m dead?
If the answer to both questions is no, then no actions are required. If however the answer is yes to one or both questions you should get your Advance Directive and your Advance Care Plan set up.
The most critical decision for Advance Care Plan is choosing your agent and having the conversation with your agent and your loved ones.
Looking to schedule an Advance Care Planning Workshop for you group or community?
Death Doulas and End of Life Options
You may not be familiar with the work of Death Doulas, or End of Life Doulas. These non-medical professional are trained to provide assistance, education, care and support to their clients who are facing end-of-life. Death Doulas work with their clients in homes, care facilities, hospices or hospitals. They may be hired by the client or the client’s family to help fill the gaps in support that exist between what hospice can provide and what is realistically needed by the client and the client’s family. Death Doula assistance comes in the form of emotional, spiritual, and physical support and each doula brings their own unique skills, experiences, and backgrounds to their work with their clients.
When it comes to end of life options, Death Doulas work directly with clients to educate them about all options available, as well as to provide support for whatever option their client may choose. These options may include pursuing a natural course for their particular disease process, choosing Medical Aid in Dying (MAiD – in states where this is available) to alleviate suffering, or using Voluntary Stopping and Eating (VSED) as a way of shortening the time to death. Death Doulas can also facilitate access to providers who work with clients for options such as MAiD and can be available to assist with that choice when the time comes.
Finding a Death Doula is as easy as using an online search engine to look for a Death Doula in your area. There are also national directories and directories for training agencies that will list what doulas are available in your city or region. As well, there are collectives and collaboratives of doulas, such as the Colorado End of Life Collaborative. If you need assistance in locating a doula in your area, please reach out to us at info@endoflifeoptionscolorado.org, and we would be happy to help in your search.
by Cindy Kaufman, MEd, EdS,
A Tribute to Courage: A Peaceful End Amidst Unbeatable Odds
In the realm of end-of-life care, every call carries a weight of urgency, a plea for solace amidst the storm of terminal illness. But some calls resonate deeper, stirring the soul with tales of courage that defy the shadows of despair. Such was the call that came to me, a plea for help from a patient facing the relentless advance of a rapidly progressive terminal illness.
The story began with desperation in the voice of a patient left stranded by fate, abandoned as their trusted doctor had departed. Yet, amidst the turmoil, there was a glimmer of hope, a resolve to seek control over the inevitable. The request was simple yet profound: assistance in navigating the journey towards medical aid in dying.
In that moment, I offered reassurance, a lifeline extended in a sea of uncertainty. Weeks passed in a blur of consultations and paperwork, each step a testament to the patient’s unwavering determination. Finally, as the morning dawned bright with the promise of a new day, the stage was set for a final act of courage.
Gathered around the patient’s bedside, family stood as pillars of strength, their love a beacon guiding the way. Last words were spoken, songs of solace filled the air, and gratitude flowed freely amidst tears. With a calm resolve and a heart filled with acceptance, the patient took the final step on their journey.
As the medication took effect, a peaceful slumber enveloped the room, a respite from the turmoil of illness. With her husband by her side, she breathed her last in the sanctuary of her own bed, surrounded by the warmth of home. It was a moment of quiet dignity, a testament to a life lived on her own terms.
In that moment, I breathed a sigh of relief, mingled with admiration for the bravery and fortitude displayed in the face of unbeatable odds. For in that act of courage, there was a glimpse of transcendence, a reminder that even in the darkest of hours, there is beauty to be found in the embrace of peace.
May her journey serve as an inspiration to us all, a testament to the power of love, courage, and acceptance in the face of life’s greatest challenges. And may we, in our own way, strive to walk with similar grace and dignity when our time comes to bid farewell to this world.
In memory of a life well-lived, and a journey bravely undertaken.
Barbara Morris
Spring 2024
