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
El negocio de morir
Tuvimos el privilegio de sentarnos con Crispin Sargent, instructora certificada de Yoga del Duelo, Educadora del Duelo, Doula del Final de la Vida, Planificadora Anticipada Certificada y miembro de la Junta Directiva de End-of-Life Options Colorado. Con más de 35 años de experiencia, Crispin ha dedicado su carrera a ayudar a los clientes a profundizar en sus deseos y planes para el final de la vida. Aquí, comparte sus valiosas ideas sobre la importancia de la planificación del final de la vida.
La importancia de planificar el final de la vida
La planificación del final de la vida es crucial para planificar su situación actual y prever dónde le gustaría estar en sus últimos días. Independientemente de cuándo se empiece, tener un plan orienta sobre cómo vivir ahora y para qué prepararse en el futuro.
Preguntas esenciales para planificar el final de la vida
Crispin subraya la importancia de plantearse preguntas clave en el "negocio de morir":
- ¿Cuál es su plan y cómo lo financiará?
- ¿Cuáles son los costes asociados? Considere los costes emocionales, físicos, financieros y de tiempo.
Componentes de su plan para el final de la vida
Proyecciones sanitarias
- Evalúe su estado de salud actual. ¿Tienes buena salud y un plan sólido de autocuidado?
- Tenga en cuenta las enfermedades preexistentes y los antecedentes familiares.
- Presupuesto para imprevistos de salud o accidentes.
Sistemas de apoyo
- Envejecer solo: ¿Tiene un plan para envejecer solo?
- Apoyo externo: ¿Necesitará servicios a medida que envejezca y quién se los prestará?
- Implicación de la familia: ¿Es realista esperar el apoyo de la familia y cuánto les costará emocional, física y económicamente?
Servicios disponibles
- Medicare y Medicaid
- Prestaciones para veteranos
- Seguridad Social
- Discapacidad
Modalidades de vida
- Su vivienda: ¿Está pagada, es asequible y segura a medida que envejeces?
- Con la familia: ¿Es razonable vivir con la familia? ¿Lo has hablado con ellos?
- Vida asistida: ¿Puede permitírselo? ¿Necesitará vender su casa para pagarla?
Inversiones financieras
- Planes de jubilación y 401K
- Herencias
- Prestaciones de la Seguridad Social
Documentos jurídicos
Es fundamental disponer de los siguientes documentos y actualizarlos anualmente:
- Poder médico y financiero
- Testamento vital o directiva anticipada
- Última voluntad
- MOST (Órdenes Médicas de Alcance del Tratamiento)
- Preferencias o planes de entierro
Navegar y actualizar su plan
Es vital tener respuestas claras en lugar de suposiciones. Reevaluar periódicamente el plan garantiza que siga siendo pertinente y realista a medida que cambian las circunstancias.
La planificación del final de la vida es un proceso esencial que proporciona tranquilidad y claridad para usted y sus seres queridos. Al abordar estas áreas críticas y buscar la orientación de expertos como Crispin Sargent, puede crear un plan integral que refleje sus deseos y necesidades.
Encontrar un propósito en el dolor: un viaje hacia la defensa de las opciones al final de la vida
De pie junto a su marido, con el corazón apesadumbrado pero lleno de determinación, hizo una promesa silenciosa. Una promesa a sí misma, a su marido y a todos los que se enfrentarían a luchas similares en el futuro. En ese momento vulnerable, mientras su marido se preparaba para dar su último suspiro, encontró claridad en medio del dolor.
Con una determinación inquebrantable, se comprometió a ofrecer voluntariamente su tiempo, energía y voz a la causa de las opciones al final de la vida. Para ella, no se trataba solo de aliviar el sufrimiento de su marido en sus últimos momentos, sino de allanar el camino para que otros encontraran paz y dignidad en sus propios viajes.
Mientras los últimos vestigios de vida se escapaban de su amado compañero, susurró sus intenciones. "Cuando esto acabe", juró, "seré voluntaria en mi casa de Arizona".
Con cada palabra, sentía que se agitaba en su interior un propósito. Se imaginaba a sí misma tendiendo la mano a pacientes y familiares, ofreciéndoles el apoyo y la orientación que tan desesperadamente necesitaban. Se imaginaba caminando a su lado, ayudándoles a sortear las complejidades de los cuidados al final de la vida y asegurándose de que sus deseos se cumplían hasta el final.
En su mente veía un futuro en el que las opciones al final de la vida no eran sólo un sueño lejano, sino una realidad tangible. Sabía que el cambio no se produciría de la noche a la mañana, pero estaba dispuesta a arremangarse y ponerse manos a la obra.
En Arizona, donde vivía, la lucha por las opciones al final de la vida ya estaba en marcha. Había un grupo de Opciones para el Final de la Vida que trabajaba incansablemente por una nueva ley, una ley que diera a los individuos la autonomía para tomar decisiones sobre su propia muerte. https://azendoflifeoptions.org/
Con un renovado sentido del propósito, se unió a sus filas, prestando su voz al coro de defensores que pedían un cambio. Juntos, lucharon por los derechos de los enfermos terminales, por la libertad de morir en sus propios términos y por la compasión y la dignidad que todo ser humano merece.
Pero su viaje estaba lejos de terminar. En medio de la silenciosa quietud de la sala, supo que su propósito ahora era ayudar a los demás a encontrar la misma paz y el mismo consuelo que había encontrado su marido. Y así, con un corazón lleno de esperanza y un espíritu fortalecido por el amor, emprendió su nuevo camino como voluntaria, como defensora y como faro de luz en la oscuridad de los cuidados al final de la vida.
Para ella, el camino hacia la abogacía no fue sólo una elección, sino una vocación. Y al responder a esa llamada, encontró consuelo en saber que el legado de su marido perduraría, no sólo en el recuerdo, sino en las vidas de aquellos a los que llegaría con su bondad, su compasión y su compromiso inquebrantable de hacer del mundo un lugar mejor para todos aquellos que se enfrentan al viaje más difícil de la vida.
Para mí, como médico de su marido, fue un honor y un regalo ser testigo de su muerte pacífica y del cumplimiento de sus deseos, así como de su determinación, resistencia y compasión para seguir adelante y convertirse en voluntaria. La gratitud y la generosidad no tienen límites.
Dra. Barbara Morris
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.
