PracticeUpdate

Palliative Care Can Be Integrated Into Management of Patients With ALS Close collaboration and communication are essential among teams caring for patientswithALS F or the first time, palliative care has been integrated into a Moscow service for individuals with amyotrophic lateral

decisions about life-sustaining interven- tions. These discussions were particularly important when individuals and families lacked information and symptoms were not controlled adequately nor were unwanted hospitalizations and prolonged ventilator support prevented. Such inter- ventions may affect quality of life. Moreover, according to Russian law, interventions such as ventilation cannot be withdrawn. Among the most prevalent end-of-life symptoms is dyspnea, and 40% of individuals in this cohort suffer from persistent dyspnea (median Borg score 5 out of 10). Dyspnea is also a main reason underlying admission to intensive care, a topic needing discussion as it relates to life-sustaining interventions. Dr. Brylev’s team was the first in Russia to use morphine for dyspnea in individuals with ALS. Their experience showed that morphine can be used safely. There is no evidence of an increase in pCO2 in arterial blood. Morphine can be used effectively as well as safely. In fact, 50% of individuals evaluated their response as good, 40% as partial, and only 10% as ineffective. Dr. Brylev concluded that neurologists and palliative care specialists continue to work together closely, with the aim of integrating palliative care principles into the standard of care for individuals with ALS. Numerous challenges remain.

David J. Oliver, BSc, MBBS, of the University of Kent, Canterbury, UK, determined the optimal timing to begin palliative care in individuals with ALS. He reviewed the literature as well as his clinical experience. Though palliation is often associated with care at the end of life, its role is much greater. For an individual with progressive neuromuscular disease such as ALS, it may be argued that care should be palli- ative from diagnosis. For example, the manner in which the diagnosis is communicated to the individ- ual and family can exert a significant effect on later stages of care. An individual who believes that death may involve choking or breathlessness may continue to fear these symptoms despite explanation that these risks are minimal. All professionals involved in the care of individuals with neuromuscular disease need to provide palliative care inasmuch as they look to maximize quality of life of individual and family. Care is usually by a multidisciplinary team, and may improve not only quality, but also length of life. Dr. Oliver concluded that close collab- oration and communication is essential among all teams involved in the care of individuals with ALS. www.practiceupdate.com/c/70782

sclerosis (ALS). The process of integration was described in a cohort of 672 partici- pants at ICNMD 2018. Lev Brylev, MD, of the Buyanov City Hospital in Moscow, Russian Federation, explained that the first specialized multidisciplinary out-patient center for individuals with ALS in Moscow opened in 2012 and is now a part of the European Network to Cure ALS network. The Moscow ALS Center at St. Alexey Hospital follows about 200 families with ALS every year and is funded by the “Live Now” Foundation (www.ALSFund.ru). Before 2012, individuals with ALS had no access to palliative care because hos- pices would not accept them and national legislation on the provision of palliative care to individuals without cancer was not passed until 2011. No specialized education in palliative care for neurological individuals was available in Russia, so foreign experts were invited to teach Dr. Brylev’s team. A palliative care physician who had studied palliative care abroad was invited to multidisciplinary discussions. Multidisciplinary out-patient consultations began and the palliative care approach, with its emphasis on individual auton- omy, dignity, and quality of life changed Dr. Brylev’s practice completely. Analyzing data from 672 participants, the investigators found that median disease duration was 1188 (range 791 to 1787) days, time from first symptom to diagnosis, 365 (range 191 to 587) days, and from diagno- sis to referral to the team, 320 (range 132 to 630) days. On admission to the service, individ- uals had been suffering from ALS for approximately 2 years. Their median vital capacity was 51% (range 38% to 80%). It was apparent that they had not talked about advance planning. Only 30% had ever discussed their prognosis and death with their family or physician. The training enhanced the communication skills of Dr. Brylev’s team. They learned to talk with individuals about prognosis and

© TIRZA/www.tirza.at

ICNMD 2018 • PRACTICEUPDATE CONFERENCE SERIES 11