Lightways Hospice and Serious Illness Care offers treatment to ALS patients and their families

Program has seen a 2400 percent census increase over last seven years

The ALS Association estimates the number of people living with ALS (amyotrophic lateral sclerosis) in the United States to be more than 30,000. This number fluctuates daily because every 90 minutes, someone is diagnosed with or dies from ALS. Ninety percent of cases occur with no family history, and the onset is usually between the ages of 40 and 70.

According to Lisa Heiy, director of Serious Illness Care at Lightways Hospice and Serious Illness Care, the number of patients with ALS the organization cared for increased 2400 percent from 2016 to 2023.

“Lightways has seen dramatic increases in both the serious illness and hospice care program for people with ALS,” Heiy said. “We are able to create personalized care programs for each patient and their families to help them navigate this disease today, and as needs change in the future.”

While there is no cure for ALS, Serious Illness Care at Lightways, also known as palliative care, can help improve the quality of life and manage symptoms for the patient, as well as educate families about the different stages of the disease. ALS is a degenerative disease that challenges an individual’s ability to control his/her body. Routine tasks such as bathing, eating, and dressing become difficult and as the disease progresses, so does speaking, eating, and breathing which can cause immense physical discomfort and emotional pain.

“Our Serious Illness Care team is specially trained to assist ALS patients and their families,” said Heiy. “Our team helps enhance communication with a family’s doctors about goals and future advanced care plans, including mechanical ventilation, artificial feeding, and hydration. At every stage, our Serious Illness Care program clears the way for a patient and his/her loved ones, together, to enjoy the best possible quality of life.”

Heiy also said the Serious Illness Care program helps families make the transition to hospice care when they feel ongoing treatment is no longer helping.

“It is all about the continuity of care,” she said. “This can be a scary and emotional time for a patient and his/her family. The prognosis can change daily. Our Serious Illness Care team is here to help provide reassurance about the quality of care to families and ensure the patient is as comfortable as possible.”

In addition, Heiy said the Serious Illness Care team will work in partnership with a patient’s neurologist and multidisciplinary team to manage symptoms and assist with the coordination of care.

“This team specializes in managing the symptoms and stress of serious illness and is also well-versed in navigating the complex health care system. We provide an extra layer of support and ensure whatever can be well-controlled, will be well-controlled.”

For more information about care for ALS patients at Lightways Hospice and Serious Illness Care, visit the website: lightways.org/als-care/ or call 815.740.4104.