How to advocate for a loved one in the ICU

If someone you care about is seriously ill or injured and is receiving care in the ICU, you can play an important role in ensuring they get the care they need and that that care is in line with their wishes. One thing that can help guide you is your loved one’s healthcare directive or living will.

This document outlines how they want medical decisions made if they cannot make them. It usually includes an outline of the types of care they do and do not want if they are not expected to recover, as well as how long certain types of care should be provided. For example, they may want a ventilator used, but can indicate how long they’d like ventilation continued. As the pandemic has highlighted, serious illness can affect people of all ages, so everyone should create a healthcare or advance directive and choose a medical power of attorney to make decisions on their behalf if they are unable to.

There are several steps you can take to advocate for a loved one who is in the ICU:

• Understand why your loved one is in the ICU: To be an effective advocate, you’ll need to understand why your loved one has been admitted to the ICU. Many medical centers have a family meeting to share this information. Ask the care team what medical problem is being treated and why that problem requires intensive care. You’ll also want to know what the treatment plan is, if there are other effective treatment options, and what medical decisions you’ll need to make on your loved one’s behalf.
• Find out how the care team will share information with you. When your loved one is first admitted to the ICU, ask who will update you on their condition, how often you’ll receive updates, who can answer your questions, and how you can talk with any specialists involved with their care. It’s also helpful for you to let the care team know you are the communication and decision making point person for the patient. Confirm that they have all the numbers needed to contact you day or night.
• Make sure the care team has a copy of the advance directive, HIPAA authorization, and power of attorney documents. The physicians and nurses caring for your loved one need these documents to share healthcare information with you and ensure the care they provide is aligned with your loved one’s wishes. Ask your contact in the ICU how this information is shared with the team. If you see treatment being provided that doesn’t seem to be in line with your loved one’s wishes, speak up and ask what’s being done, why, and remind them of the guidelines in the advance directive.
• Ask what the prognosis is and what you can expect during recovery. Find out what the care team believes the expected course of your loved one’s condition is. Ask how long they may be in the ICU and what the next steps in recovery would be after that. Will they remain in the hospital in a step-down unit? Will they need to spend time in a rehabilitation facility? What type of support will they need with care and recovery once they come home from the hospital? If your loved one is not expected to recover, you may want to discuss pain management, hospice care, and whether your loved one can come home for their final days.

It can also be valuable to enlist the support and expertise of an experienced health advisor during your loved one’s ICU stay. An advisor can help coordinate care, provide the care team with the patient’s complete, up-to-date medical records, and arrange second opinions. An advisor also can provide you with information about treatment options to help you make an informed decision that’s in line with your loved one’s wishes.