A severe medical condition that puts a person into intensive care often occurs unexpectedly, catching loved ones unprepared.
Family and friends of patients who suffer a life-threatening illness often are thrust into a scary realm, uncertain of whether their loved ones will survive and, if they do, what the aftereffects will be and what kind of long-term care they’ll need.
The stresses of dealing with intensive care units have been amplified during much of the coronavirus pandemic, especially in recent weeks as the quick-spreading omicron variant has filled emergency rooms, straining every type of critical care.
A Santa Fe doctor hopes to address some of these challenges in a newly published book that helps guide families through one of the most grim situations they could find themselves in.
“I designed it to be something that exhausted, stressed people could read easily while in the waiting room or at the bedside,” said Dr. Lara Goitein, a pulmonologist who spent 12 years as an intensive care physician, most recently at Christus St. Vincent Regional Medical Center.
The 238-page book is titled ICU Guide for Families: Understanding Intensive Care and How You Can Support Your Loved One.
The New York Times’ health columnist, Jane E. Brody, called Goitein’s book “extraordinarily thorough and helpful.”
“Ideally, families would have this book at the ready when needed, like a first-aid manual, because the initial days in an ICU are often the most stressful and disconcerting,” Brody wrote.
The book also drew praise from Dr. Siddhartha Mukherjee, who won a Pulitzer Prize in 2010 for his book The Emperor of All Maladies: A Biography of Cancer.
Goitein, he wrote, has produced an essential guide to one of the most difficult journeys through the one of most difficult wards in any hospital.
Efforts by hospitals in the past decade to counsel families of ICU patients and instruct them on how to handle lingering medical problems that require long-term care have been hampered by the pandemic, Goitein said, because medical workers have become overwhelmed. It has become difficult for them to do anything beyond essential care as they face a health care strain that stems from the skyrocketing numbers of COVID-19 cases, coupled with increasing staff shortages.
Armed with the basic knowledge of medical procedures, family members can be much stronger patient advocates, Goitein said. That ranges from knowing which questions to ask to ensuring a patient’s wishes are carried out when they are incapacitated, especially when it’s time to decide whether to discontinue mechanical life support.
Although the main focus of the book is the ICU stay, it also offers advice in planning for long-term care and looking for needed medical services, which should be undertaken before the person is released from the hospital, she said.
“It helps a lot for families to have the right expectations,” she said. “The caregiving burden often falls on family members. It’s important to be able to plan your life accordingly.”
Although most ICU patients will survive and be released, roughly half will suffer “post-intensive care syndrome” or PICS, resulting in a lingering cognitive, physical or even emotional aftereffects that can last months or years.
The patients with PICS are generally those who required extended life-support measures, such as being on a ventilator longer than a few days, Goitein said, adding most patients with severe COVID-19 wind up on ventilators for a couple weeks. “That’s the sickest of the sick.”
Among the patients struggling with PICS, only a fifth of them will achieve full independence in the first year after their hospital stay, she said.
A sixth will go directly home, while the rest will be transferred to a rehabilitation, nursing or acute-care facility. A large portion will have to return to the hospital at least once.
And a third of the patients with this syndrome will die within the first year of leaving the ICU, Goitein said.
The good news is that most patients who make it to three years post-ICU are able to live independently, she added.
But families should know that a loved one getting through a lengthy ICU stay is only part of the battle.
“It’s definitely a long haul,” she said.