Lehigh Valley Health Network LVHN Scholarly Works Department of Medicine Integrating Palliative Care Into the Care of Neurocritically Ill Patients: A Report From the Improving Palliative Care in the ICU Project Advisory Board and the Center to Advance Palliative Care. Jennifer A. Frontera MD J. Randall Curtis MD, MPH Judith E. Nelson MD, JD Margaret L. Campbell PhD, RN, FAAN Michelle Gabriel RN, MS See next page for additional authors Follow this and additional works at: https://scholarlyworks.lvhn.org/medicine Part of the Medical Sciences Commons Published In/Presented At Frontera, J. A., Curtis, J. R., Nelson, J. E., Campbell, M., Gabriel, M., Mosenthal, A. C., & ... Weissman, D. E. (2015). Integrating Palliative Care Into the Care of Neurocritically Ill Patients: A Report From the Improving Palliative Care in the ICU Project Advisory Board and the Center to Advance Palliative Care. Critical Care Medicine, 43(9), 1964-1977. This Article is brought to you for free and open access by LVHN Scholarly Works. It has been accepted for inclusion in LVHN Scholarly Works by an authorized administrator. For more information, please contact [email protected]. Authors Jennifer A. Frontera MD; J. Randall Curtis MD, MPH; Judith E. Nelson MD, JD; Margaret L. Campbell PhD, RN, FAAN; Michelle Gabriel RN, MS; Anne C. Mosenthal MD, FACS; Colleen Mulkerin MSW, LCSW; Kathleen A. Puntillo DNSc, RN, FAAN; Daniel E. Ray MD; Rick Bassett MSN, RN; Renee D. Boss MD; Dana R. Lustbader MD, FCCM, FCCP; Karen J. Brasel MD, MPH, FACS; Stefanie P. Weiss MA; and David E. Weissman MD, FACP This article is available at LVHN Scholarly Works: https://scholarlyworks.lvhn.org/medicine/663 HHS Public Access Author manuscript Author Manuscript Author ManuscriptCrit Care Author Manuscript Med. Author manuscript; Author Manuscript available in PMC 2016 September 01. Published in final edited form as: Crit Care Med. 2015 September ; 43(9): 1964–1977. doi:10.1097/CCM.0000000000001131. Integrating Palliative Care into the Care of Neurocritically Ill Patients: A Report from The IPAL-ICU (Improving Palliative Care in the Intensive Care Unit) Project Advisory Board and the Center to Advance Palliative Care Jennifer A. Frontera, MD, FNCS, Cerebrovascular Center of the Neurological Institute, Cleveland Clinic J. Randall Curtis, MD, MPH, University of Washington School of Medicine Judith E. Nelson, MD, JD, Icahn School of Medicine at Mount Sinai Margaret Campbell, PhD, RN, FAAN, Wayne State University Michelle Gabriel, RN, MS, VA Palo Alto Health Care System Ross M. Hays, MD, University of Washington School of Medicine Anne C. Mosenthal, MD, FACS, Rutgers New Jersey Medical School Colleen Mulkerin, MSW, LCSW, Hartford Hospital Kathleen A. Puntillo, RN, PhD, FAAN, University of California, San Francisco Daniel E. Ray, MD, MS, FCCP, Lehigh Valley Health Network Rick Bassett, MSN, RN, St. Luke's Hospital Renee D. Boss, MD, John Hopkins University School of Medicine Dana R. Lustbader, MD, FCCM, FCCP, Address for correspondence: Jennifer A. Frontera, MD, FNCS Cleveland Clinic, Cerebrovascular Center 9500 Euclid Ave. S80 Cleveland, OH 44195 Tel: (216) 445-3248 Fax: (216) 636-2061 [email protected]. Disclosures: None Copyright form disclosures: The remaining authors have disclosed that they do not have any potential conflicts of interest. Frontera et al. Page 2 ProHEALTH, Hofstra North Shore-Long Island Jewish Health System Author Manuscript Author Manuscript Author Manuscript Author Manuscript Karen J. Brasel, MD, MPH, and Oregon Health & Science University Stefanie P. Weiss, MA Icahn School of Medicine at Mount Sinai David E. Weissman, MD, FACP and The IPAL-ICU Project Advisory Board Abstract Objectives—To describe unique features of neurocritical illness that are relevant to provision of high-quality palliative care; To discuss key prognostic aids and their limitations for neurocritical illnesses; To review challenges and strategies for establishing realistic goals of care for patients in the neuro-ICU; To describe elements of best practice concerning symptom management, limitation of life support, and organ donation for the neurocritically ill. Data Sources—A search of Pubmed and MEDLINE was conducted from inception through January 2015 for all English-language articles using the term “palliative care,” “supportive care,” “end-of-life care,” “withdrawal of life-sustaining therapy,” “limitation of life support,” “prognosis,” or “goals of care” together with “neurocritical care,” “neurointensive care,” “neurological,” “stroke,” “subarachnoid hemorrhage,” “intracerebral hemorrhage,” or “brain injury.” Data Extraction and Synthesis—We reviewed the existing literature on delivery of palliative care in the neurointensive care unit setting, focusing on challenges and strategies for establishing realistic and appropriate goals of care, symptom management, organ donation, and other considerations related to use and limitation of life-sustaining therapies for neurocritically ill patients. Based on review of these articles and the experiences of our interdisciplinary/ interprofessional expert Advisory Board, this report was prepared to guide critical care staff, palliative care specialists, and others who practice in this setting. Conclusions—Most neurocritically ill patients and their families face the sudden onset of devastating cognitive and functional changes that challenge clinicians to provide patient-centered palliative care within a complex and often uncertain prognostic environment. Application of palliative care principles concerning symptom relief, goal setting, and family emotional support, will provide clinicians a framework to address decision-making at a time of crisis that enhances patient/family autonomy and clinician professionalism. Keywords neurocritical care; neuro ICU; intensive care unit; palliative care; end of life care Introduction Neurocritical illness, defined as critical illness primarily involving the brain, spinal cord, or neuromuscular system [1], is often a sudden, catastrophic event for patients and their families. Although advances in neurocritical care continue to improve outcomes, mortality rates for common conditions including intracerebral hemorrhage and anoxic brain injury Crit Care Med. Author manuscript; available in PMC 2016 September 01. Frontera et al. Page 3 range above 50%, and many patients never regain functional independence (Table 1). Author Manuscript Author Manuscript Author Manuscript Author Manuscript Patients often experience significant cognitive loss along with deterioration in quality of life. [2, 3] Even for those who survive without permanent disabilities, recovery from neurological injury can be prolonged and accompanied by physical and psychological distress for patients as well as practical and emotional burdens for families. For these reasons, palliative care, including communication about goals of care in relation to the patient's condition, prognosis, and preferences, is an important component of high quality care in the neurocritical care environment. Palliative care focuses on relief of symptoms, effective communication about goals of care, alignment of treatment with patient preferences, family support, and planning for transitions. [4, 5] Whereas hospice or end of life care is for patients approaching death, palliative care is appropriate in the context of any serious illness, regardless of stage or prognosis, and is optimally provided together with, not in lieu of, disease-directed or life-prolonging treatment. Palliative care is an interprofessional specialty, but also an approach for all clinicians caring for seriously ill patients who are expected to provide excellent “generalist”- level palliative care.[6] In this article, The IPAL-ICU (Improving Palliative Care in the ICU) Project Advisory Board brings interdisciplinary and interprofessional expertise together to address challenges and strategies regarding prognostication, communication, and decision making for the neurocritical care patient and family. Onset and Trajectory of Neurocritical Illness The onset of neurocritical illness is usually abrupt and follows a trajectory that is distinct from that of other patients with life-threatening illness (Figure 1).[7, 8] Neurocritically ill patients often face a sudden and total transformation from good health and independence to the prospect of death or serious and permanent disability. Over 70% of patients in the neuro- ICU have no premorbid symptoms and present with a precipitous loss of physical and cognitive function.[9, 10] Therefore, from the onset, clinicians face the challenge of helping families cope with the impact of an unexpected and devastating illness, making it more difficult to focus on the decision-making process. Decision-making is further complicated by the unpredictable and extended course of many forms of neurocritical illness. Often, patients do not progress to death (by cardiovascular or brain-based criteria) after neurological injury, but instead either improve slowly over several months or stagnate in a severely disabled state. Most deaths among the neurocritically ill occur after limitation of life-sustaining therapies. Nationally, 13.5% -15% of patients in neuro-ICUs have life-sustaining therapies withheld or withdrawn, and limitation of such therapies precedes up to 61% of all deaths in the neuro-ICU.[9-11] In those who do not die, recovery is prolonged. Brain-injured patients make their maximal spontaneous recovery over 3-6 months, though improvement can continue over the ensuing