Neuropalliative Care, Part Two, Volume 191 - Handbook of Clinical Neurology (July 5, 2023)_(0128245352)_(Elsevier).pdf

Neuropalliative Care, Part Two, Volume 191 covers a type of care that is given when there is no cure for the neurological disorder and the patient is in distress. It provides a scholarly background of neuropalliative care, from historic underpinnings to its practice in various geographical regions, along with best practices for specific neurological disorders. It covers the work of multi or interdisciplinary teams whose care is intended to make the patient as comfortable as possible and includes partners and families in treatment plans. Cover Series Page Series Page Copyright Copyright Handbook of Clinical Neurology 3rd Series Handbook of Clinical Neurology 3rd Series Foreword Foreword Preface Preface Contributors Contributors Palliative care after stroke survival Introduction Symptom Management Chronic pain Musculoskeletal pain Central poststroke pain Complex regional pain syndrome Chronic headache Opioids for poststroke pain Anxiety and depression Sleep, sleepiness, and fatigue Spiritual and existential suffering Other Goals-of-Care Conversations Family Needs End-of-Life Care and Hospice Research Directions References Palliative care approaches to acute stroke in the hospital setting Introduction Stroke Background Epidemiology Initial stroke assessment Communication in the Acute Stroke Period Delivering serious news Establishing goals of care Symptom Management Dyspnea and respiratory failure Dysphagia Communication difficulties Delirium Constipation and incontinence Immobility Pain Spasticity Neuropsychiatric Complications Depression Anxiety Apathy Anger or aggression Prognostication Ischemic stroke Hemorrhagic stroke Recommendations for prognostication Advance Care Planning and Stroke Timing of palliative care End-of-life palliative care (hospice care) Family support Conclusion References Outpatient neuropalliative care Introduction Definition and Scope of Neuropalliative Care Need for Outpatient Neuropalliative Care Modes of Delivery for Outpatient Neuropalliative Care Models of Outpatient Neuropalliative Care Patient Selection and Timing of Outpatient Neuropalliative Care Components of a Neuropalliative Care Visit Communication About Serious Illness: Cultivation of Prognostic Awareness and Exploration of Goals and Values Prepare for the conversation Explore patients readiness for serious illness communication Explore patients illness understanding Discuss patients hopes, worries, and personal goals Provide prognostic information Re-exploring patient preferences Communication best practices and responding to patient emotion Advance Care Planning Facilitating Adaptive Coping Symptom Management Physical symptoms Pain Spasticity and Muscle Cramping Dyspnea Constipation Fatigue Sleep Disturbance Speech and Swallowing Issues Cognitive and Behavioral Changes Mobility Changes Emotional and psychosocial symptoms Spiritual needs Caregiver Needs Assessment and Care Coordination End-of-Life Care Conclusions References Community-based neuropalliative care Definition of Community-Based Neuropalliative Care Evidence for Community-Based Palliative Care in Mixed and Nonneurologic Populations Evidence for Community-Based Neuropalliative Care in the Home for Specific Neurologic Illnesses Neurooncology Multiple sclerosis Parkinson's disease and related disorders Amyotrophic lateral sclerosis Combined neurodegenerative conditions Evidence for Nursing Home-Based Neuropalliative Care for Specific Neurologic Illnesses Dementia Parkinson's disease and related disorders The Impact of the COVID-19 Pandemic on the Delivery of Community-Based Neuropalliative Care Challenges, Gaps, and Future Directions in the Provision and Study of Community-Based Neuropalliative Care References Palliative care in brain tumors The Role of Palliative Care in Neuro-Oncology Brain Tumors: An Overview Treatment of gliomas Direct tumor effects and treatment-induced neurotoxicity Seizures Headaches Fatigue and sleep disturbances Advance care planning Caregiver and psychosocial support Conclusion References Palliative care in Parkinson disease and related disorders Disease Burden Motor symptoms Nonmotor symptoms Neuropsychiatric symptoms Other nonmotor symptom burden Other burden Care partner burden Methods for identifying symptoms Treatment of Nonmotor Symptoms Autonomic Treatment of Motor Symptoms Advance Care Planning End-of-Life Care Disease features specific to the end of life: Dysphagia Predicting the End of Life in PD and Related disorders End-of-life care preferences Models of Palliative Care in PD and Related Disorders Novel care delivery methods Conclusions References Further reading Palliative care for people with dementia Introduction Anticipating Palliative Care Needs Common Palliative Care Needs Psychosocial needs Physical needs Pain Dyspnea and swallowing disorders Appetite disorder, weight loss, and malnutrition Constipation Gait impairment, falls, and immobility Seizures Spiritual and emotional needs Emotional distress and grief in the person with dementia Anticipatory grief in families Palliative Care for People with Young Onset Dementia End-of-Life Care Symptom relief Terminal delirium Respiratory tract infection and pneumonia Supporting families through bereavement Models of Palliative Care for People With Dementia EAPC white paper Community dementia palliative care Core components Optimal service organization Barriers Effectiveness of community models Service led by SPC team Service led by dementia team Integration of existing services Residential Care Dementia Palliative Care Acute Hospital Dementia Palliative Care Conclusions References Palliative care in multiple sclerosis Introduction Symptoms Treatment in MS Palliative care: General principles Palliative Care: Description of the Intervention Palliative Care in Neurological Diseases Dynamic Model in Palliative Care Screening for Palliative Care Needs Estimate Prognosis in MS Palliative Care in Multiple Sclerosis Interventions and Trials in Multiple Sclerosis Communication Considerations in Multiple Sclerosis End of Life Conclusion References Palliative care principles in ALS Introduction Heterogeneity of Disease When to Introduce Advance Care Planning and Goals-of-Care Discussions Models of Providing Palliative Care Respiratory Support Nutrition Support Symptom Management Sialorrhea and dry mouth Pain Spasticity Cramps Fasciculations Mood Pseudobulbar affect Insomnia Cognitive and/or behavioral impairment Dysarthria and communication issues Medication Review Psychosocial Issues Advance Care Planning End of Life Invasive Ventilation and NIV Withdrawal Assisted Dying Organ Donation Bereavement Support Future Studies Conclusion Pediatric neuropalliative care Introduction Defining the Population Communication Skills Parents as decision makers Cultural humility in communication Communicating prognosis Challenges in shared decision making Ethical issues Symptom Management Pain Evaluation Management Irritability Feeding intolerance Autonomic dysfunction Sleep disturbances Depression/anxiety/PTSD Spasticity Seizures Symptom management summary End of Life Care Communication End of life conversations Symptom management Dyspnea Palliative sedation Hospice Bereavement Limitations and Future Directions Disclosures References Neonatal neuropalliative care Introduction Family-Centered Communication Antenatal counseling At birth In the neonatal ICU After discharge Prognostication and Decision-Making Antenatal diagnoses At birth In the neonatal ICU After discharge Pain and Symptom Management At birth In the neonatal ICU After discharge Care at the End of Life Withdrawal of life-sustaining interventions Grief and bereavement Considerations of Culture, Spirituality, and Practice Location Research Gaps and Priorities Family centered communication Prognostication and decision-making Symptom management Summary Disclosures References Care partner support Introduction Concepts in Care Partnering The Stress Process Model for Care Partners in Palliative Neurology Care Partner Considerations by Disease Alzheimer's and related dementias (ADRD) Parkinson's disease Amyotrophic lateral sclerosis Multiple sclerosis Stroke Interventions, Supports, and Resources for Care Partners in Palliative Neurology Communication and advance care planning Education and skill building interventions Social support interventions Future Research Priorities Conclusions References Spirituality and spiritual distress in neurologic illness Introduction Definitions of Key Terms Spirituality and religion Spiritual distress Suffering Spirituality in Neurologic Disease for Patients, Caregivers, and Families Patients Spirituality as a source of well-being in neurologic disease Spiritual distress in neurologic disease Neurologic disease and spiritual conceptions of self Neurologic disease and body image Neurologic disease and identity Neurologic disease and the fear of being a burden Neurologic disease and loss of control Neurologic disease and many, progressive losses Neurologic disease and confronting mortality Caregivers of patients with neurologic illness Families Clinical Implications of Spirituality in Neurologic Illness A framework for providing spiritual care The relationship of spirituality to healing Clinical roles in spiritual care provision Chaplaincy spiritual care Spiritual care intervention models Generalist spiritual care provision Spiritual screening and assessment tools The role of physicians in spiritual care for patients with neurologic diseases Limitations and Future Directions Conclusion References Neurology ethics at the end of life Introduction Considerations of Capacity and Authority for Medical Decision Making Considerations of Religious and Cultural Influence on Neurology Ethical Analysis in EOL Medical Decision Making Considerations of Specific Clinical Contexts in Neurology Ethics; the Law, and EOL Medical Decision Making Physician-hastened death Withholding, withdrawing, or limiting life-sustaining treatment Palliative sedation Death by neurological criteria/brain death Conclusion References Education in neuropalliative care Background Defining primary vs specialty palliative care and neuropalliative care Primary Palliative and Neuropalliative Care Education for Neurologists The primary neuropalliative care skill set Current status of primary neuropalliative care education in neurology residency and fellowship programs Continuing primary palliative and neuropalliative care education Specialty Neuropalliative Care Education Specialty neuropalliative care skill set Hospice and palliative medicine fellowship programs Nonfellowship training opportunities in specialty palliative and neuropalliative care Career Tracks in NPC Becoming a Leader in Neuropalliative Care Education Educational Needs in Neuropalliative Care and Future Opportunities Educational needs Education research and advocacy Conclusion References Web References Index