What Resources Can Provide Guidance and Support for People Navigating End-of-Life Care in the ICU?

Navigating the end-of-life process in any scenario can feel overwhelming and emotionally taxing — this can feel even more true when you or your loved one is in the unfamiliar surroundings of the ICU. There are several resources and organizations that offer guidance, support and information, both for the person nearing end of life, and their family, friends and caregivers. 

In-hospital resources:

• Hospital Social Workers — Many hospitals have social workers who specialize in end-of-life care and can provide emotional support, help with decision-making and connect families with resources.
• Hospital Chaplaincy Services — Most hospitals have chaplains or spiritual care providers who offer support and spiritual guidance to patients and families during times of crisis and loss. However, you or your loved one needn’t be religious in order to seek a chaplain’s support.
• Palliative Care Teams — Increasingly, ICUs are offering palliative care; such a care team specializes in providing relief from the symptoms and stress of serious illness. They work alongside the primary medical team to address physical, emotional and spiritual needs of patients and families.
  • CaringInfo (part of the National Hospice and Palliative Care Organization) has a robust collection of online resources related to serious illness and care.

Beyond the hospital: 

• Support Groups — Support groups for families of ICU patients, or individuals navigating end-of-life in the ICU, provide a safe space to share experiences, receive support and learn to move through grief. You can ask a hospital social worker for information about local, in-person groups or connect with online communities, such as at ICUSteps or the online ICU Support Group from the Mayo Clinic.
• Online Resources — In addition to support groups, there are many online resources and even a hotline that can provide information and support for individuals and families managing end-of-life in the ICU.
  • ICUSteps has a fantastic and thorough End of Life In ICU Guide (also available as a PDF).
  • The Conversation Project has an excellent Guide for Talking With a Health Care Team, in addition to several other end-of-life guides.
  • You can receive a free booklet, Understanding Your ICU Stay: Information for Patients and Families, from the Society of Critical Care Medicine.

You are not alone during this challenging time, and it can be helpful to know that there are many resources and forms of support available — both inside and outside of the hospital — to help you and your loved ones through this particular end-of-life journey.

Sources

“Patient Communicator App”. Society of Critical Care Medicine. https://www.sccm.org/clinical-resources/patient-and-family 

CaringInfo. https://www.caringinfo.org/ 

“Your Guide for Talking with a Health Care Team”. The Conversation Project. https://theconversationproject.org/wp-content/uploads/2020/12/HealthCareTeamGuide.pdf 

“End of Life in Intensive Care”. ICU Steps. https://icusteps.org/information/information-sheets/end-of-life 

“ICU Support Group”. Mayo Clinic. https://connect.mayoclinic.org/group/intensive-care-icu/ 

“The ICUsteps online community at HealthUnlocked”. ICU Steps. https://icusteps.org/support/online-community