Home care model could offer more comfort for ALS patients: Pilot study
Project found feasible, rated as highly satisfactory by patients and caregivers
A home-based multidisciplinary care model for people living with amyotrophic lateral sclerosis (ALS) was found feasible, and was rated as highly satisfactory by both patients and caregivers, according to a pilot study conducted in Germany.
The care model also helped patients avoid hospitalizations and remain at home during the end of their lives.
“This pilot project successfully implemented specialized, home-based multidisciplinary care for ALS patients and caregivers,” the researchers wrote.“The multiprofessional approach, including neuropalliative, psychosocial and spiritual support provided comprehensive care that addressed [the] needs of patients and caregivers.”
The team noted that “further research is warranted to explore cost-effectiveness.”
The study, “Homecare amyotrophic lateral sclerosis (ALS): A multidisciplinary, home-based model of care for patients with ALS and their caregivers,” was published in the journal Muscle & Nerve.
Evaluating a personalized, home-based care model for ALS patients
ALS is characterized by the progressive loss of the nerve cells needed for muscle control, known as motor neurons. As these cells degenerate and die, patients gradually lose their ability to walk, speak, swallow, and breathe.
A multidisciplinary care team is recommended for managing the complex and progressive symptoms of ALS. However, as patients become increasingly immobile, the logistics of getting to the doctor — often found at large health centers in university hospitals — or other necessary services become more challenging and the burden on caregivers increases.
Beyond neurology treatment, another critical aspect of ALS management is palliative care, or care intended to help make people living with serious or life-limiting illnesses more comfortable. This is especially important later on in the course of the disease, when experienced professionals can help families navigate complex decisions, including an end-of-life plan.
In this pilot study, the researchers evaluated the benefits of a personalized, home-based care model that integrated neurological and palliative care for individuals with ALS who were not able to attend outpatient care.
“Our goal was to provide patients with personalized care, enabling them to be cared for at home for as long as possible,” the researchers wrote.
The program was open to adults with ALS living in areas near Munich. It was created by researchers at the department of neurology and palliative care at Krankenhaus Agatharied, a hospital in Hausham, Germany.
Patients received regular home visits according to their needs, from neurologists, palliative care doctors, nurses, social workers, and chaplains, with visits planned at least once a month. Once stable relationships were established, telephone or video calls were sometimes used in between visits.
The care team also met virtually every other week, and had an external supervisor working with them 3-4 times a year to discuss difficult cases and challenges, and to help develop additional skills.
Many patients received both multidisciplinary and palliative care
The new study described the outcomes of 88 of the 94 ALS patients who enrolled in the program, as well as the experiences of 74 of their caregivers. Most of these individuals lived at home and were cared for by family, with a minority living alone or with nursing care.
Patients received home care for a mean of 282 days, or a little longer than nine months, during which they received a mean of 10.8 home visits.
Symptom control proved to be very challenging for the study participants. To help keep patients out of the hospital, the care team often brought technologies directly to the patients’ homes — including breathing devices and technology for clearing mucus. The researchers noted that normally, adjustment of ventilation support would require multiple days of hospitalization, which “is considered as stressful for both patients, caregivers and hospital personnel because of high care needs.”
During follow-up, 49 patients died. While some were already receiving round-the-clock at-home nursing care upon entering the program, the team helped arrange such care for others during the end-of-life phase. This included at-home nursing care or hospice placement.
Of those who died, 61% died at home. Deaths in hospice and acute hospital care each occurred for 10% of patients. Another 13% died in a palliative care ward, and 6% died in a nursing home.
A proactive approach to identify needs and anticipate clinical deterioration was crucial, as [was] close cooperation with specialized palliative care teams in the end-of-life phase of ALS patients. … This enabled a high number of patients to stay at home until the end of their life.
A total of 27 of those who died received specialized treatment from a palliative care team alongside the multidisciplinary team at the end-of-life phase. In some cases, continuous sedation or pain medication was used at the end of life.
“A proactive approach to identify needs and anticipate clinical deterioration was crucial, as [was] close cooperation with specialized palliative care teams in the end-of-life phase of ALS patients,” the researchers wrote. “This enabled a high number of patients to stay at home until the end of their life.”
A notable proportion of ALS patients openly discussed, at their home visits, their wish to hasten death. Between 18.6% and 30% of patients reported a high level of desire to speed their death.
Altogether, 20% of the patients who died chose to hasten death, with means including assisted suicide, unannounced suicide, refusal to eat or drink, stopping ventilation support, or palliative sedation.
Home care model deemed successful, but must be studied for cost-effectiveness
The results of patient questionnaires indicated “high satisfaction” with the specialized home care model. Questionnaires distributed to caregivers after the ALS patient had died reflected that they believed their loved one had a high-quality end-of-life period.
Overall, “this pilot project successfully implemented a multiprofessional and specialized care concept for ALS patients and their caregivers and demonstrated feasibility and high satisfaction,” the researchers wrote.
“This approach prioritizes patients and families in their home environment, optimizes resource allocation, and provides a holistic view of patient and caregiver needs,” they added.
Future research will need to look at the program’s cost-effectiveness, according to the researchers.
Among the funders of the study was Amylyx Pharmaceuticals, which marketed Relyvrio (sodium phenylbutyrate and taurursodiol), an ALS therapy that was discontinued earlier this year.
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