A guide to helping the lives of patients and families affected by neurologic disease by Claire J. Creutzfeldt, Benzi M. Kluger, and Robert G. Holloway.
This comprehensive guide thoroughly covers all aspects of neuropalliative care, from symptom-specific considerations, to improving communication between clinicians, patients and families.
Neuropalliative Care: A Guide to Improving the Lives of Patients and Families Affected by Neurologic Disease addresses clinical considerations for diseases such as dementia, multiple sclerosis, and severe acute brain injury, as well as discussing the other challenges facing palliative care patients that are not currently sufficiently met under current models of care. This includes methods of effective communication, supporting the caregiver, how to make difficult treatment decisions in the face of uncertainty, managing grief, guilt and anger, and treating the pain itself.
Written by leaders in the field of neuropalliative care, this book is an exceptional, well-rounded resource of neuropalliative care, serving as a reference for all clinicians caring for patients with neurological disease and their families: neurologists and palliative care specialists, physicians, nurses, chaplains, social workers, as well as trainees in these areas.
Books Coming Soon:
Navigating Life with Neurologic Illness
Kluger BM, Reckess G. (2013). Perception and Recognition. In Arciniegas DB, Anderson CA, Filley CM, (eds.) Behavioral Neurology and Neuropsychiatry (pps. 144-160). New York, NY: Cambridge University Press.
Kluger BM, Friedman JH (2009). Fatigue in Parkinson’s Disease. In Chaudhuri K, Tolosa E, Schapira A, Poewe W, (eds.) The Non-motor Symptoms Complex of Parkinson’s Disease. (pp. 135-146). New York, NY: Oxford University Press.
Kluger BM, Fernandez HH (2009). Management of Non-motor Manifestations of Parkinson’s Disease. In Simuni T and Pahwa R, (eds.) Parkinson’s Disease: A Practical Guide to Diagnosis and Management. (pp 83-94). New York, NY: Oxford University Press.
Kluger BM, Krupp LB (2014). Invisible Symptoms – Fatigue, Depression, and Cognition. In Samkoff L, Goodman AD, (eds.) Multiple Sclerosis and CNS Inflammatory Disorders. (pp 114-121). Hoboken, NJ: Wiley-Blackwell.
Glover TL, Kluger BM. Palliative Medicine and End of Life. Handbook of Clinical Neurology. In Press.
Kluger BM (2017). Fatigue in Parkinson’s disease. In Chaudhuri KR and Titova N (eds.), International Review of Neurobiology Non Motor Parkinson’s: The Hidden Face, Volume 133: The Many Hidden Faces (pps. 743-768). Cambridge: MA: Elsevier Inc.
Kluger BM (2018). Caring for Patients and Families affected by Advanced Parkinson’s disease. In Robinson MT (ed.), Case Studies in Neuropalliative Care. Cambridge University Press; 2018 May 31.
Kluger BM (2018). Making a Diagnosis with Compassion in Parkinson’s disease. In Robinson MT (ed.), Case Studies in Neuropalliative Care. Cambridge University Press; 2018 May 31.
This paper addresses key issues regarding terminology and phenomenology to allow for more consistent definitions and measurement of fatigue for clinical research and care.
This is the report of an international working group proposing case definition criteria for Parkinson’s disease (PD)-related fatigue.
Neuroimaging study showing that fatigue in Parkinson’s disease (PD) is associated with changes in the brain that are different than depression or sleep and also different from older adults without Parkinson’s who had fatigue. These results suggest PD-related fatigue is a unique neurobiologic syndrome.
The brain engages unique networks to maintain cognitive performance under fatiguing conditions. When these compensatory networks fail the rate of performance decline increases steeply.
Working with colleagues at the University of Florida we asked the question of how does fatigue affect performance on a cognitive task. Although people had slower reaction times this wasn’t the whole story. Looking at how the distribution of responses changed over time we found that the fastest responses actually improved, likely due to learning, and that the slowing of average reaction times was largely driven by an increase in variability, possibly due to attentional lapses.
This review focuses on how current models of care do not adequately address the needs of people living with neurologic illness. A proposal is then given about a new evidence-based framework for early and ongoing palliative care approaches.
This paper describes the results of a large, multisite randomized controlled trial of team-based outpatient neuropalliative care for Parkinson’s disease. We found that palliative care results in improved patient quality of life, symptom control, motor function, and advance care planning as well as caregiver burden and anxiety. It is a crucial step towards more widespread adoption of this approach in Parkinson’s disease and neurology.
This paper calls attention to the wide array of challenges facing people living with neurological illnesses and their family. As these many of these needs are not well met under current models of care it calls for a paradigm shift for our field to embrace and integrate palliative care approaches.
These two papers utilize qualitative interviews to better understand the palliative care needs and preferences of people living with palliative care and their family care partners.
Practical suggestions for clinics and healthcare providers interested in getting a neuropalliative care clinic off the ground including checklists for all team members.
Summary of the meeting of an international working group on palliative care and Parkinson’s disease including recommendations for where the field should go.
Spiritual wellbeing has rarely been studied amongst individuals living with Parkinson’s disease. We found that higher spirituality was associated with better quality of life, lower anxiety, lower depression, fewer non-motor symptoms, reduced palliative symptoms, and less anticipatory grief.
Although we framed this paper around caregiver burden, one could also look at it from the perspective of what factors were protective to caregivers. Interestingly, patient spiritual wellbeing, specifically faith, caregiver mood and caregiver perspectives on the patient’s quality of life all influenced burden and suggest targets for positive interventions.
An essential aspect of democratizing health is providing people living with serious illness the information they need to make their own decisions. This collaborative paper involving colleagues at the University of Colorado, patients and families provides the metaphor of a roadmap as a useful framework for discussions. It avoids the trap of thinking medical professionals need to provide an exact timeline or crystal ball to have a productive conversation.
I was honored to get to work with an amazing group of people living with Parkinson’s disease and family care partners who developed a prescription for the medical community on how palliative care should be offered throughout the course of early, middle and late-stage disease.
This paper highlights the shortcomings of making a diagnosis of dementia based solely on the results of neuroimaging. In this study we showed that PET scans more often than not led to a misdiagnosis, most often labeling someone as having Alzheimer’s disease who did not have Alzheimer’s, and in some cases didn’t even have dementia.