Patient & Family Resources

In study after study, ICU patients and families have stressed the need for information about their clinical care and the decisions they face. Here are a variety of valuable materials that clinicians can provide, along with direct communication, to help meet this important need.

  • Your Healthcare Team Meeting (Information for ICU Families)-Clarian Health This leaflet was prepared for families of patients receiving ICU care in Clarian Health Partners hospitals in Indiana. Clarian participated in the Transformation of the ICU Project of the Voluntary Hospital Association, Inc., including the ICU palliative care improvement initiative. The leaflet is intended to prompt families to request and to prepare for a meeting with the healthcare team.
  • Meeting with the ICU Team: a Guide for Families The ICU Palliative Care Initiative by Veterans Integrated Service Network 3 sponsored development of this guide to help families prepare for a meeting with the ICU team. The guide encourages families to gather relevant information and materials, focus on specific topics (examples provided), and write down questions for clinicians. The intent is to make ICU family meetings more effective and efficient.
  • Mount Sinai Medical ICU Family Information Brochure In 2002, Azoulay et al. reported results of a randomized controlled trial showing that a family information leaflet was associated with greater comprehension and satisfaction among ICU families in France (Am J Respir Crit Care Med. 2002; 165:438-42). Based on the leaflet used in that trial, this brochure was designed for a U.S. medical ICU.
  • Frequently Asked Questions in the ICU This booklet is for ICU families "who are facing a stressful situation with a loved one." It can be purchased from the American College of Chest Physicians, with bulk discounts.
  • Stories at the End of Life In this set of six booklets, patients and families describe end-of-life experiences. The booklets are intended to help patients, families and physicians understand these experiences. Booklets may be purchased from the American College of Chest Physicians.
  • American Thoracic Society (ATS) Patient Information Series: Brochure on Palliative Care for Patients with Respiratory Disease or Critical Illness This brief description of palliative care is part of the American Thoracic Society's Patient Information Series. It is free for download on the ATS Web site.
  • American Thoracic Society (ATS) Patient Information Series: Critical Care Assembly "Primer on Critical Care for Patients and Their Families" Free for download on the ATS Web site. Topics covered include "Expectations," addressing what patients and families should expect of the health care team during critical illness, "Advance Directives," "Cardiopulmonary Resuscitation," "Code Status," "Withdrawal of Life-Sustaining Treatments," "Making Decisions About the End of Life," and "Medical Futility."
  • Patient & Family Resources: ICU Issues and Answers Brochures This series of support brochures developed by the Society of Critical Care Medicine can be purchased at the SCCM Patient and Family Web site: MyICUCare.org. Topics include: "Why Do ICU Patients Look and Act That Way?"; "Participating in Care: What Questions Should I Ask?"; "Making Decisions About ICU Care"; "What Are My Choices Regarding Life Support?"; "Chronic Critical Illness in Adults Requiring Prolonged Mechanical Ventilation"; "Taking Care of Yourself While a Loved One is in the ICU."
  • End of Life: Helping with Comfort and Care This booklet from the National Institute on Aging (NIA) is available for free download. The booklet is meant to help families work with professional caregivers more effectively and to provide a framework for decisions about care.
  • Finding Care at the End of Life This booklet from the National Institute on Aging (NIA) is available for free download. It addresses decisions about the most appropriate place of care for someone nearing the end of life, including a brief section about: "The doctor wants to move my relative to the ICU. What can we expect?"
  • Talking to Children About Death This monograph, available through the National Institutes of Health (in the Patient Information Publications series of the NIH Clinical Center), provides guidance on discussing death with children in different age groups.
  • Hard choices for loving people This book by a nursing home and hospice chaplain addresses decisions about CPR, artificial feeding tubes, living wills, ventilators, dialysis and other topics. The book is available for purchase and can also be downloaded free for personal use.
  • GetPalliativeCare.org An informational resource for patients and families. Key components of the Web site include a Palliative Care Directory of Hospitals, a definition of palliative care and a detailed description of how palliative care differs from hospice. The site is provided by the Center to Advance Palliative Care (CAPC).
  • SCCM Patient and Family website: MyICUCare.org This Web site for patients and families provides links to a variety of resources, including support brochures and clinical practice guidelines that are relevant to ICU palliative care.
  • Compassionate Care in the ICU: Creating a Humane Environment (DVD) Available in a version for patients and families and in a version for professionals, this video addresses common barriers to optimal end-of-life care and suggests strategies for improvement. Copies are available at no charge from the producer by contacting: David Comora, Davids Productions, Montville, NJ. Phone: (973)541-2201

Resources for Pediatric/Neonatal ICU Settings

  • Partnership for Parents An online support network created by parents for parents of children with serious illness. It provides information, resources and links to other useful sites.
  • The Compassionate Friends The Compassionate Friends provides support to bereaved families after the death of a child. It has a national office and networks through hundreds of local chapters in all 50 states, D.C., and Puerto Rico and ?virtual chapters? in an online live chat community. A series of informational brochures written by parents, siblings and grandparents is available from this organization.
  • Share Pregnancy and Infant Loss Support, Inc. This organization provides support for parents and health care professionals affected by the death of a baby through early pregnancy loss, stillbirth or in the first few months of infancy. It provides a catalog of resources and information about support groups.
  • Perinatal Hospice This organization provides resources to parents and caregivers of parents receiving a prenatal diagnosis that their baby has a fatal condition but who wish to continue the pregnancy. One of these resources is a national list of perinatal hospices.
  • Fetal Concerns Program of the Children's Hospital of Wisconsin: Description of Palliative Caree A useful summary of palliative care in the context of pediatrics, including when such care may be appropriate and the role that parents can play.