CONTINUUM Lifelong Learning in Neurology最新文献

Objective: This article outlines the physical, psychological, social, and spiritual issues that people with neuromuscular disease may face as the disease progresses and how neuropalliative care can help in the assessment and management of these issues.

Latest developments: Understanding of the genetic influences on progressive neuromuscular disease is increasing, and new treatments are being developed that may offer the possibility of slowing or even halting disease, although the treatments may be very expensive. The use of technology will allow some areas of care, particularly communication, to be improved. The use of voice banking, eye-gaze communication systems, and enhanced communication aids will all improve care and quality of life for people with neuromuscular disease. New treatments and approaches to symptom management and the increased use of multidisciplinary care teams will help improve the quality of life and maybe the length of life for patients.

Essential points: Careful assessment and individualized care, provided by a skilled multidisciplinary care team, are emphasized in the holistic approach to neuropalliative care, which considers physical, psychological, social, spiritual, and existential aspects for people with neuromuscular diseases. The support of all involved, including the patients with the disorders, their families and care partners, and the multidisciplinary care team is important.

Objective: This article familiarizes readers with the multidimensional suffering experienced by people living with movement disorders and their families and presents a neuropalliative care framework and skillset to prevent and address this suffering.

Latest developments: Over the past decade, significant progress has been made to advance palliative care approaches for patients with Parkinson disease and other movement disorders. This population has significant palliative care needs that are poorly met under traditional models of care, including nonmotor symptom management, advance care planning, psychosocial support, spiritual and existential support, care partner support, and timely referrals for specialist and end-of-life palliative care (hospice). Clinical trials demonstrate that specialist palliative care can improve many patient and family outcomes. Emerging data also suggest that primary palliative care approaches (neurologists applying palliative care skills) may improve some outcomes, but further work is needed to determine optimal models for neurologist education and integration into practice.

Essential points: Neurologists can use the five-pillars framework (nonmotor symptoms, advance care planning, psychosocial and spiritual support, care partner support, and timely involvement of specialist palliative care) to systematically address common sources of suffering that are poorly recognized in traditional models of care. This framework can be integrated into previsit screening forms and note templates to improve the detection of palliative issues. As with other complex medical issues (eg, deep brain stimulation), there may be times when visits may need to focus on palliative topics or referrals made to other health care providers to ensure optimal outcomes.

Objective: This article explores the role of neuropalliative care in caring for patients with multiple sclerosis and other demyelinating diseases, focusing on its integration into multidisciplinary care for symptom relief, psychological support, and quality-of-life enhancement.

Latest developments: Advances in disease-modifying therapies have extended life expectancy and reduced disability progression in patients with multiple sclerosis. However, palliative care remains underutilized in addressing persistent symptoms, care partner burden, and psychosocial challenges.

Essential points: Palliative care should be initiated early in the disease course and integrated with disease-modifying therapies and rehabilitation. An emphasis is placed on symptom management, care partner support, social inclusion, and psychosocial interventions. The interdisciplinary approach improves patient outcomes and addresses the complexities of these chronic conditions.

Objective: This article provides an overview of what neurologists need to know about hospice and basic symptom management at the end of life, addressing issues relevant to both outpatient and inpatient settings.

Latest developments: Randomized, placebo-controlled trials are challenging in this patient population, and many of the recommendations for symptom management represent expert opinion and common practices in hospice and palliative care. More high-quality evidence is needed to guide best practices.

Essential points: Core competencies in end-of-life care are necessary for any clinician who cares for patients with serious and potentially life-limiting illnesses. Comprehensive end-of-life care integrates knowledge of the biomedical aspects of disease with patients' values and preferences for care; psychosocial, cultural, and spiritual needs; and support for patients and their families. Communication with patients and their surrogate decision-makers helps ensure their perspective is heard and their needs are met. Both inpatient and outpatient neurologists should be able to start conversations about hospice and answer general questions from patients and surrogate decision-makers. In the hospital setting, neurologists may be responsible for managing common end-of-life symptoms. Hospice and palliative care specialists can be important collaborators in navigating the end of life.

Objective: This article characterizes the unique aspects of neuropalliative care related to helping children with serious illness and their families live well in the face of health fragility and disability that may extend over years or even decades. Shared decision-making, medical management principles, and health care system-level factors are highlighted to provide concrete examples of how care may be affected.

Latest developments: Advances in diagnostic and therapeutic strategies have dramatically changed the field of child neurology, allowing for more precise diagnoses, more potential for intervention, and more home-based care for children with complex medical conditions. As a result, parents grapple with uncertain timelines, face countless decisions, and take on medical caregiving, often with inadequate support structures and considerable personal sacrifice. Because neurologic disease frequently creates additional barriers for communicating directly with patients themselves, it is especially important to maintain focus on the child's best interest and ways of understanding the child's experience over time. As disease-modifying treatments and medical technologies become more effective and available, our field must also evolve strategies to support the whole person and the context in which they live, not just interventions that maintain the physical body.

Essential points: Child neurologists care daily for patients who can benefit from the communication strategies and management practices central to pediatric neuropalliative medicine, whether at the primary or subspecialty level. Although it is important to acknowledge life-threatening complications that may occur to develop congruent care plans, end-of-life management is only a fraction of the expertise of this evolving area of subspecialty practice.

Objective: Because of the impact of serious neurologic illness on quality of life, personhood, and prognosis, neurologists must be comfortable and skillful in communicating about serious illness. This article provides an overview of the approach to serious-illness conversations for patients with neurologic disease, offers specific communication techniques, outlines strategies to address challenging situations, and recommends educational opportunities for neurologists seeking additional training in serious-illness communication.

Latest developments: The American Academy of Neurology (AAN), the Accreditation Council for Graduate Medical Education, and multiple other neurologic professional societies have formally acknowledged the importance of palliative care and serious-illness communication skills in neurologic care. The International Neuropalliative Care Society was recently formed to promote high-quality palliative care, including serious-illness communication, for all patients living with serious neurologic conditions. Numerous educational resources have been developed to meet the growing need for serious-illness communication skills among neurologists.

Essential points: Skilled serious-illness conversations improve rapport, reduce patient anxiety and depression, and increase the likelihood that treatment choices agree with patient goals and values. Communication skills can be honed during and after neurology training.