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Supporting the Critically Ill

Emotional Support

  • Be Present: Simply spending time at the bedside, holding their hand, or talking to them can significantly improve a patient's stay, even if they appear to be asleep or are non-responsive.

  • Provide Comfort: Create a comforting environment by using soft lighting, playing music at a low volume, or bringing in approved personal items like photos.

  • Talk to Them: Remind them of the day, date, and time, and talk about reassuring topics like family events or what's going on at home. This helps with potential confusion or delirium common in the ICU.

  • Listen Actively: If the patient can communicate, listen attentively to their needs and preferences without interruption. Respect their privacy and their wishes regarding who they want to share medical details with. 

Caregiver Self-Care

  • Prioritize Your Health: Eat healthy, get enough sleep, and take breaks from the bedside. Caregiver burnout is a real risk. A well-rested caregiver is better able to provide support.

  • Seek Support: Utilize hospital resources such as social workers, psychologists, spiritual care staff, or patient support specialists for guidance and counseling.

  • Connect with Peers: Consider joining a support group for families of critically ill patients, where you can connect with others facing similar challenges and share experiences.

  • Allow Yourself to Feel: It's normal to feel a range of emotions, including anxiety, anger, and grief. Allow yourself to process these feelings rather than falling into "toxic positivity".

Practical Support & Communication

  • Designate a Spokesperson: Appoint one family member to be the primary contact for the medical team. This streamlines communication and ensures consistent information is shared with the rest of the family.

  • Keep a Notebook/Diary: Write down medical updates, questions, and the names of the care team members. This helps you stay organized and can be a valuable record for the patient's recovery journey.

  • Advocate for Your Loved One: Be vocal about the patient's needs, preferences, and values, especially if they are unable to speak for themselves. You are an important part of the care team.

  • Ask for Specific Tasks: Offer specific assistance with daily chores (e.g., watering plants, doing laundry, childcare, running errands) rather than open-ended "let me know if you need anything" offers. The family caregiver is often overwhelmed.

  • Coordinate Support: Use tools like a shared email list or a private social media page to keep friends and family informed and to coordinate help, reducing the burden on the primary caregiver.

  • Understand the Care Team: Get to know the roles of the medical team (doctors, nurses, social workers, palliative care specialists). They can provide support, answer questions, and help with complex decisions, including end-of-life care planning. 

RESOURCES | Critically Ill and Disabled

Patient Advocate Foundation (PAF)

Provides professional case management services, educational resources, and financial aid to patients facing obstacles in accessing quality healthcare, including insurance appeals and complex billing issues.

Visit the Patient Advocate Foundation website for direct patient services.

PAN Foundation & Good Days

Nonprofit organizations that offer copay and premium financial assistance for more than 80 chronic and critical illnesses to help patients afford out-of-pocket costs for life-saving and life-extending treatments.

Check their websites (PAN Foundation, Good Days) to see if the specific disease/ medication is covered by a current fund.

Americans with Disabilities Act (ADA)

Federal law that prohibits discrimination against individuals with disabilities in all areas of public life, including employment, state and local government services, and public accommodations.

Contact the U.S. Department of Justice Civil Rights Division or the EEOC for discrimination complaints and legal resources

Chronic Disease Coalition

Works to protect the rights of patients with chronic diseases, fighting against unfair, illegal, and harmful practices by insurance companies and others at the state level.

Visit the Chronic Disease Coalition website to get educated on patient rights and get involved in local advocacy efforts.

NAMI (National Alliance on Mental Illness)

The nation's largest grassroots mental health organization providing support, education, and advocacy for individuals and families affected by mental illness, which often co-occurs with chronic and critical illness.

Call the NAMI HelpLine at 1-800-950-6264 or Text "NAMI" to 62640.

USAGov Disability Benefit Finder

An official tool to help individuals quickly identify potential federal benefits they may be eligible for based on their disability or qualifying illness.

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