Hoy es el Día Nacional de las Decisiones de Atención Médica, un día en el que se anima a todos a revisar su planificación para el final de la vida.

El informe anual de la Asociación de Alzheimer de 2024 predice que el número de estadounidenses de 65 años o más que viven con la forma más común de demencia se duplicará pasando de casi 7 millones a 14 millones de pacientes en 2050.

Jessica Empeño, del grupo de defensa del final de la vida Compassion & Choices afirma que las cuestiones legales son sólo una parte de la ecuación.

"Lo más importante es hablar sobre lo que más nos importa," dice Empeño, "cuáles son sus deseos, y compartirlos no solo con su familia y sus seres queridos, sino también con su equipo médico."

Es posible que las personas quieran dejar por escrito quién quieren que sea capaz de tomar decisiones en su nombre una vez que la demencia progrese. Podrían considerar si en el futuro estarían de acuerdo con cosas como hidratación o nutrición artificial, tratamientos agresivos o cirugías.

El sitio web de Compassion & Choices ofrece una herramienta gratuita de Decisiones sobre el Final de la Vida y otra de Valores y Prioridades en la Demencia que ayuda a las personas a comunicar y documentar sus deseos futuros en materia de atención médica, tanto para quienes padecen demencia en la fase inicial como para quienes simplemente quieren estar preparados ante esa posibilidad.

Angela Schultz es directora de defensa de Compassion & Choices en el estado de California. Dice que la gente necesita hacer un plan lo antes posible.

"Acabamos de hacer una encuesta," dice Schultz, "y el 93% de los estadounidenses dijeron que tener una directiva anticipada y un poder de atención médica y compartirlos con su médico es muy importante. Pero solo el 37% de los estadounidenses lo ha hecho."

El Día Nacional de las Decisiones de Atención Médica cae el 16 de abril, el día después del día de impuestos. Es una referencia a la famosa cita de Benjamin Franklin que dice "En este mundo, nada es seguro excepto la muerte y los impuestos".

A Chicago mom who lost her son to cancer in 2022 is using the occasion of Mother's Day to call on Illinois lawmakers to pass medical aid-in-dying legislation.

Suzy Flack's 34-year-old son Andrew was a special-education teacher and avid hockey player living in California when he learned his cancer was terminal. Rather than return to his home state, he stayed in California, where medical aid-in-dying is legal.

Now, with such legislation under consideration by Illinois lawmakers, Suzy Flack is using social media to urge its passage.

"Like I said in the video, I didn't realize how horrific cancer was," she said. "So, I would really like to stress that that comfort level that he had because he had the control over his death."

The legislation would allow mentally capable, terminally ill adults with six months or less to live the option to request a prescription for medication they could use to end their life.

According to a 2023 survey by the group Compassion & Choices, more than 70% of Illinois residents support such a law, while 17% would oppose it.

With no legal way to end his life in his home state, Flack said her son was unwilling to leave California because he wanted a peaceful death.

"That option of having the medication was strong enough to keep him there, despite missing his family," she said, "and certainly, it would have been easier for all of us if he had been back in Illinois."

In addition to California, medical aid-in-dying is authorized in ten other states and Washington, D.C., while two additional states - Wisconsin and Massachusetts - are considering legalization. The Chicago-based American Medical Association has not endorsed the legislation.

It's National Nurses Week, and educators and healthcare officials say there just aren't enough of them to go around. A combination of retiring baby boomers and nurses who chose to leave the field after the pandemic has left a projected shortfall of more than 5,400 nurses in Nebraska's hospitals, clinics and long-term care facilities.

Linda Hardy, Nebraska Nurses Association president, explained that the system is not training enough new nurses to fill the vacancies.

"I think across the country we have a nursing shortage," she intoned. "But the other thing we have a shortage of are nurse educators - and also, clinical sites for student nurses to be able to practice their clinical skills."

According to a Nebraska Health Care Workforce Collaborative report, 66 of the state's 93 counties have been declared medically underserved, and nine have no nurses. The report points to degraded "emotional health and well-being" as the main reason for staff shortages.

Hardy added healthcare providers and state officials are studying how to increase the investment in educational facilities and clinical sites to train new healthcare workers, and said one goal is to recruit them when they are young.

"There's a collaborative effort to try and get more healthcare workers, not just nurses but radiology techs, pharmacists, etcetera, into the pipeline from high school kids. So, that's a good thing," she insisted.

Carole Johnson, administrator of the Health Resources and Services Administration, said her mission during National Nurses Week is to highlight the vital role nurses play on the front lines, providing care, comfort and support to patients every day, but added the best way to honor them is to support them from training through retirement.

"You have to be investing in the nursing workforce. And so we're providing scholarships, loan repayment, stipends, upskilling - a whole host of training initiatives to really help ensure that we can recruit people into nursing and that when they're there, that they stay," she continued.


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Birth doulas assist new moms with the stress, uncertainty and anxiety of childbirth, while another type of doula offers similar support to those who are dying.

Death doulas, or end-of-life specialists, give spiritual and emotional support to people nearing death in a nonmedical setting. The word 'doula' comes from the Greek word 'doule,' meaning 'female helper.'

Kim Burgess, end-of-life doula and board certified adult geriatric nurse practitioner for Comforting Transitions, an elder care facility in O'Fallon, said fulfilling a dying person's wish to be in their desired setting is important.

"When I was in the home, primarily geriatric population, people wanted to stay in their home; the comfort of their home, their own surrounding, their own food, their own loved ones," Burgess explained. "I loved to being able to support people in that role."

Training to become an end-of-life doula happens in workshops, with required reading and work-study assignments. Since it is not a federally recognized field, insurance companies do not cover the services. The Illinois Department of Public Health said in 2022, Cook County alone saw nearly 46,000 deaths. Almost 20,000 were between ages 65 and 84.

Death, or what is sometimes called "the other side," can produce feelings of fear, or a sense of denial, especially if a terminal condition has been diagnosed. Burgess observed it is a 24-hour job for loved ones helping someone in their final days or weeks. She has encountered families who are unprepared for the caregiving needs.

"A lot of times, their family is saying, 'We're just overwhelmed, and we have hospice involved, but we still feel like we need some more support,'" Burgess recounted. "An end-of-life doula can be there, giving the family reassurance or making some slight suggestions on how to comfort their loved one."

Doulas can also help plan an advance directive, instructions a person can leave behind about their funeral service or cremation, what to do with a pet or help writing a loving message to family and friends.