Abstract
Multidimensional socio-medical care with an early integration of palliative principles is strongly recommended in amyotrophic lateral sclerosis (ALS), but provided inconsistently. We conducted telephone interviews with 49 former caregivers of deceased ALS patients to examine their experience of care in the terminal phase including caregiver burden. Patients who received specialized palliative care (45% of patients) were more likely to die at home (p = 0.004) and without burdening symptoms (p = 0.021). The majority of caregivers (86%) reported deficits in socio-medical care. Most frequently mentioned were problems receiving medical aids (45%) and a lack of caregiver support (35%). A higher level of deficits experienced by caregivers was associated with negative health outcomes on the side of the caregivers (reported by 57% of them; p = 0.002) and stronger caregiver burden (p = 0.004). To provide good quality of dying to patients and reduce the burden on caregivers, multidimensional—including palliative—care in ALS urgently needs to be strengthened in the healthcare structures.
Highlights
Amyotrophic lateral sclerosis (ALS) is characterized by progressive degeneration of upper and lower motor neurons
The retrospective observational study was conducted at the Motoneuron disease (MND) specialist center at the Department of Neurology of the University Hospital Carl
Given the positive impact of SPC as well as the high frequency and the potential adverse effects of deficits in socio-medical care for these vulnerable patients and their family caregivers, the results of our study once more clearly speak for the need for creating strong structures for a comprehensive multidisciplinary care (MDC) in ALS: First, our data show a great need for a routinely and timely inclusion of SPC in ALS
Summary
Amyotrophic lateral sclerosis (ALS) is characterized by progressive degeneration of upper and lower motor neurons. ALS-care is guided by palliative principles and aiming at the preservation of quality of life. Specialist multidisciplinary care (MDC) is strongly recommended in ALS, since care needs and care planning are complex, including life-critical decisions [5,6]. ALS-patients report a high psychosocial load and need for support to cope with their disease. As quality of life mostly depends on patients’ psychological condition rather than on objective disease characteristics in ALS, MDC has to be holistic and focus on individual psychological, emotional, social and spiritual needs [7,8,9], and provide access to appropriate psychosocial assistance [10,11]. PPC should be included rigorously from the point of diagnosis of a life-limiting diagnosis such as ALS [19]. The provision of SPC by providers with a specific qualification and
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