How to advocate for a loved one in ICU

As a critical care nurse for decades, I know few places in a hospital are as scary for families as the intensive care unit, or ICU, where the sickest patients receive the most comprehensive, round-the-clock care.

Patients are attached to high-tech, beeping monitors and devices that sustain life, including ventilators, ECG machines, nasogastric suction machines, blood pressure cuffs and pulse oximeters. They likely have several tubes running to and from their body, including an IV catheter, urine catheter, nasogastric tube and more. Depending on their illness or injury, they may be given strong painkilling drugs or sedatives to help the healing process and keep them calm.

The doctors and nurses are different, too. Critical care medicine specialists - also called intensivists - are physicians who specialize in the care of people who are in an ICU. Nurses in an ICU have a primary duty to provide lifesaving care to patients fighting for their lives. Ideally, there's one nurse for every one to two patients.

Their goal is to have a patient's stay in the ICU be as brief as possible because the longer a patient stays in an ICU, the more longer-term problems arise, including weakness, loss of appetite, sleep problems, anxiety, depression, post-traumatic stress disorder, confusion and forgetfulness.

When a loved one is first admitted to an ICU, you may feel helpless and desperate to learn everything you can about their chances of recovery. Advocating for an ICU patient will test your patience and resolve, but it's important for family members to be involved in, or at least aware of, care decisions and to bring any concerns to ICU staff members. Patients who have cognitive or mental impairments are entitled to always have a family member or advocate present.

Here are five tips for being the most effective advocate you can be under very trying conditions.

1.) Do your best to keep emotions in check.

Doctors can be overly blunt or overly coy with their answers, concerned with how you may react to unsettling news. As upsetting as this may be, it's important to - for the moment - constrain your emotional reactions and listen carefully for information. I find writing things down is a good way to stay focused.

2.) Be mindful of the questions you ask, how you ask them and the answers you get.

Here are a few questions to give you an idea of the types of things to ask initially.

• What are you most concerned about right now?

• What has changed since yesterday/last night?

• What decisions should we be prepared to make?

• Are there any procedures for which you will need our consent?

As the ICU stay continues, you can ask about lab results, changes in status, or what another doctor might have said.

Again, keep a notebook at hand to jot notes for your own information, as well as to share with other family members.

3.) Request a family meeting with the care team.

A request like this will usually bring together some combination of doctors, nurses and others to meet with you and family members. If you have hired a private patient advocate to help you navigate this experience, they should also be there.

The meetings can be helpful because they are longer and more in-depth, taking place in a conference room instead of at the bedside. The team can walk through where things stand, what might happen and what is most important.

4.) Act as a linchpin to provide continuity.

In the space of a 10-day ICU stay, your loved one may have a different nurse every couple of days and different specialists coming and going. Regular observations by a family member can supplement the information doctors and nurses have to go on.

Electronic health records have helped continuity by keeping notes, lab results, images and tests in one place. But when a new doctor or nurse comes into play and they're evaluating your loved one for the first time, they may benefit from an observation from you that, for example, a particular medication seemed to cause agitation or lethargy.

5.) Understand that intensive care is a dynamic process.

Medicine is not a decision tree: If A, then B. Because you were told something yesterday and you're being told something different today doesn't mean someone was being less than truthful. It probably just means something changed, so a course of action had to be altered.

I think my main advice is to be present in the ICU - present for your loved one, because studies show ICU patients are aware of who is there, and present as a support for the ICU staff.

• Teri Dreher is a board-certified patient advocate. A critical care nurse for 30+ years, she is founder of NShore Patient Advocates (www.NorthShoreRN.com). Her new book, "How to Be a Healthcare Advocate for Yourself & Your Loved Ones," is now available on Amazon. She is offering a free phone consultation to Daily Herald readers; call her at (847) 612-6684.