430 - End-of-Life Decisions in People with ALS: A Case Report.

Thursday, February 22, 2024

5:00 PM – 6:30 PM EDT

Presenting Author(s)

NP

Nathalia María M. Pérez Becerra, MD

Physiatry Resident
Universidad Nacional de Colombia
Bogota, Distrito Capital de Bogota, Colombia

Co-Author(s)

JM

Juan Camilo Mendoza Pulido, MD

Physiatrist
Universidad Nacional de Colombia/Departamento de Rehbailitación, Instituto Roosevelt
Bogota, Distrito Capital de Bogota, Colombia
MP

Martha Peña Preciado, MD

Neurologist
Amyotrophic Lateral Sclerosis/Motoneuron Disease Clinic, Instituto Roosevelt
Bogota, Distrito Capital de Bogota, Colombia

Case Diagnosis: Amyotrophic Lateral Sclerosis (ALS) is an incurable and progressive neurological disease that often has a fatal outcome within a short period of time. This can pose a challenge for both physicians and patients and their families, who must decide between prolonging life with palliative care or allowing euthanasia.

Case Description: 56-year-old man with ALS diagnosed in 2016. Over time, his condition worsened, reaching a minimal score on the ALSFRS-R scale. Because of this, he required a gastrostomy, a ventilator device and an augmentative communication device. In January 2022, he requested euthanasia and this was approved in February of the same year. However, the family cites difficulties in accessing this procedure, including a lack of knowledge and empathy on the part of healthcare personnel, as well as a shortage of physicians willing to perform euthanasia in her place of residence.

Discussions: In Colombia, legislation requires an assessment of the patient's mental capacity to make end-of-life decisions. This decision should be based on the patient's knowledge of his or her illness and treatment alternatives, including palliative care. Although there are best practice guidelines for physicians, responses to requests for euthanasia are heterogeneous. Physicians are often responsive to patients' concerns, but they are not always proactive in the decision-making process and execution of the procedure.

Conclusions: Although Colombia has legislated on access to dignified death, ALS patients still face significant barriers to access euthanasia. Lack of knowledge and empathy on the part of healthcare personnel can delay or even prevent access to this service. It is important that physiatrists are familiar with the legislation and understand the specific context of each patient, avoiding judging decisions that do not correspond to them and facilitating access to these procedures.