Terminally ill patients often lack a firm understanding and awareness about their end-of-life care options, a trend researchers across the world are examining more closely. https://bit.ly/3Cg6uaf
Jaime Brown
2mo
Very informative
Whitney Taverna
2mo
As someone who has worked with the ALS community (and Hospice and palliative care) for 23 years, the issue many times is diagnosis coming too late delaying care and equipment needs. The Medicare/insurance delays to obtain equipment like power wheelchairs and speech-generating devices often takes months and delays early Hospice support. These pieces of equipment become vital to quality of life. In addition, many facing ALS have rapid progression of symptoms, often causing difficulty in keeping up with the next step. As one loss is faced, the next loss follows quickly behind. The emotional processing of these losses is overwhelming and makes it even more challenging to make decisions. There are always outliers who may not understand what Hospice can do to support QOL and/or are resistant to the idea of Hospice, for sure. However having been a part of ALS clinics, working with experts and teams that support the ALS community, I can attest that we are very much palliative in approach, and serve as advocates and educators of utilizing Hospice care as soon as patients meet criteria and have obtained the tools they need to enhance their QOL. And the majority of clients I’ve worked with are accepting of Hospice & see the benefit.
Nurse | Social Worker | Collaborator | Navigator Subject Matter Expert in Hospice & Palliative Medicine, Post-Acute Care, Dementia, Developmental Disabilities, and Epilepsy.
2moWe know this trend exists—and has existed. Any hospice clinician can tell you that the issue lies with poor support/education of acute and community providers and a cultural refusal to accept mortality. The people that we trust the most—healthcare workers and systems—fail us at our most vulnerable and sacred time. Less research, more action. 🩷