Introduction
Life expectancy and leading causes of death:
Joaquin Vu et al. National Vital Statistics Report 64, no. 2 (2016).
End of life information:
US Department of Health and Human Services, National Institute of Aging, “End of Life: Helping with Comfort and Care.”
Chapter 1
Illinois advance directives:
Illinois Department of Public Health website. “Advance Directives.”
care-regulation/nursing-homes/advance-directives
Illinois living will (document):
Illinois Department of Health website
Ohio living will and health care power of attorney (documents):
Ohio Hospital Association
Problems with the living will:
Angela Fagerlin and Carl E. Schneider. 2004. Enough: The Failure of the Living Will. Hastings Center Report 34, no. 2 (2004): 30–42.
Aging:
Mayo Clinic website, “Aging: What to expect”
National Institutes of Health, National Library of Medicine website, “Aging changes in organs - tissue - cells”
Chapter 2
Cardiac arrest information for families:
Mayo Clinic website, “Sudden cardiac arrest”
Cardio-pulmonary resuscitation (CPR)
American Heart Association website, “Cardiac Arrest vs Heart Attack”
Sue Maynard Campbell, a champion for people with disabilities:
Sian Vasey. Sue Maynard Campbell. The Guardian. June 2008.
Chapter 3
Some facts on ALS:
ALS website
Chapter 4
Older drivers:
Centers for Disease Control and Prevention (CDC) website. National Center for Injury Prevention and Control, Division of Unintentional Injury Prevention, “Older Adult Drivers”
“Do not resuscitate” (DNR) order:
National Institutes of Health, National Library of Medicine, “Do-not-resuscitate order”
Updated by Laura J. Martin, MD, February 6, 2016.
Information and statistics on disability
Centers for Disease Control and Prevention (CDC) website
Function evaluation
Mahoney, F. I., and D. Barthel. Functional evaluation: the Barthel Index. Maryland State Med Journal 14 (1965):56–61. Used with permission.
Chapter 5
Useful information on coma scales:
Brainline.org website, “What is the Glasgow Coma Scale?”
Traumatic brain injury (TBI):
Nucleus Medical Media, “Concussion/Traumatic Brain Injury (TBI)”
Published by Nucleushealth.com (2012)
IMPACT.org, International Mission for Prognosis and Analysis of Clinical Trials in TBI
Deep venous thrombosis:
Mayo Clinic website, “Deep vein thrombosis (DVT)”
Chapter 6
The problem of delirium in intensive care unit patients:
intensive care unit Delirium and Cognitive Impairment Study Group website
Description of the brain injury known as a subdural hematoma:
Harvard Medical School, Patient Education Center, “Subdural Hematoma”
Chapter 7
Multiorgan failure:
Posted by ABD broadcast, Australia. “Multiple Organ Failure.” August 7, 2014.
Mortality scoring:
Breslow, M. J., and O. Badawi. Severity Scoring in the Critically Ill: Part 1—Interpretation and Accuracy of Outcome Prediction Scoring Systems. Chest 141, no. 1 (2012): 245-252, doi: 10.1378/chest.11-0330.
SOFA calculator:
QxMD website, Sequential Organ Failure Assessment (SOFA)
Chapter 8
Stroke information:
National Stroke Association website
Stroke, severity, and outcome:
Ellis, Mary Ellen, and Erica Cirino. “Massive Stroke: Symptoms, Treatments, and Outlook.” 2016. Medically reviewed by Graham Rogers, MD, Healthline.
Chapter 9
Opioid abuse:
Volkow, Nora D. “America’s Addiction to Opioids: Heroin and Prescription Drug Abuse.” National Institute on Drug Abuse. NIH. 2014.
Legal thinking and the history of withdrawal of care:
Luce, John, and Ann Alpers. Legal Aspects of Withholding and Withdrawing Life Support from Critically Ill Patients in the United States and Providing Palliative Care to Them. American Journal of Respiratory and Critical Care Medicine 162, no. 6(2000):2029–2032, doi: 10.1164/ajrccm.162.6.1-00
Withdrawal of ventilator, information for families:
American Association of Critical Care Nurses website, “Ventilator Withdrawal Guidelines.”
Chapter 10
Cancer:
American Cancer Society website
Early palliative care in advanced cancers improves quality of life and extends life:
Howie, Lynn, and Jeffrey Peppercorn. Early palliative care in cancer treatment: rationale, evidence and clinical implications. Therapeutic Advances in Medical Oncology 5, no. 6 (2013): 318–323, doi: 10.1177/1758834013500375
End of life issues:
Howard LeWine, MD, Chief Medical Editor. “As cancer death approaches, palliative care may improve quality of life.” Internet Publishing, Harvard Health Publications. Posted July 11, 2012.
Chapter 11
Autoimmune disease:
Julie Roddick. “Autoimmune Disease.” Medically reviewed by Steven Kim, MD, Healthline. July 22, 2015.
Pulmonary hypertension:
Cleveland Clinic website, “What is pulmonary hypertension?”
End of life issues:
PBS. Frontline. “Facing Death” PBS.org. November 2010.
Chapter 12
Pulmonary fibrosis:
National Institutes of Health, Health Topics, “Living with Idiopathic Pulmonary Fibrosis.”
Stephanie Pierce. “The Outlook for Idiopathic Pulmonary Fibrosis: Prognosis and Life Expectancy.” Medically reviewed by George Krucik, MD, MBA. August 28, 2015
Chapter 13
There are many reliable sites for information on coma and vegetative state; check Brainline.org.
Ariel Sharon biography:
Biography.com Editors. “Ariel Sharon Biography.” The Biography.com website. A&E Television Networks. August 24, 2016.
Chapter 14
Chronic obstructive pulmonary disease (COPD):
COPD Foundation website
Late-stage COPD care:
Weiss, Barry D. Hospice Eligibility for Patients with COPD. Elder Care. 2010. (Updated May 2015.)
Foley catheter and infections: frequently asked questions:
CDC.gov, “FAQs about ‘Catheter-Associated Urinary Tract Infection’”
Chapter 15
Robin Williams:
Smith, Nigel M. Robin Williams’ widow: “It was not depression” that killed him. The Guardian. November 2015.
Alzheimer’s disease:
Alzheimer’s Association website
Chapter 16
Heart failure:
Ashley, E. A., and J. Niebauer. Cardiology Explained. London: Remedica. 2004. Chapter 7, “Heart Failure.”
Classification of heart failure:
American Heart Association website, “Classes of Heart Failure.”
Heart failure and palliative care:
Adler, Eric D., Judith Z. Goldfinger, Jill Kalman, Michelle E. Park, and Diane E. Meier. Palliative Care in the Treatment of Advanced Heart Failure. Circulation 120, no. 25 (2009):2597–2606.
(Important article: Palliative care is not hospice. Palliative care prolongs life and improves symptoms)
Chapter 17
Cirrhosis:
Jeffrey A Gunter, MD. “Cirrhosis Overview.” Reviewed 1/4/2016.
emedicinehealth.com
MELD calculator:
MDcalc.com. MELD Score (Model for End-Stage Liver Disease) (12 and older)
Transition of care for patients with end-stage liver disease:
Cox-North, Paula, et al. The Transition to End-of-Life Care in End-Stage Liver Disease. Journal of Hospice & Palliative Nursing15, no. 4(2013):209–215, doi: 10.1097/NJH.0b013e318289f4b0.
Chapter 18
Kidney facts, prevention, and other information:
National Kidney Foundation website
Mortality in renal failure calculator:
Qxmd.com. Estimated six-month mortality on dialysis (calculator).
Conclusion:
Balancing expectations:
Benson, W. F., and N. Aldrich. Advance Care Planning: Ensuring Your Wishes Are Known and Honored If You Are Unable to Speak for Yourself. Critical Issue Brief. Centers for Disease Control and Prevention. 2012.